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Date: 0101-01-01T00:00:00+00:00

Every Step of the Way

Caring for a Partner with Breast Cancer in the UK

A Guide for (mostly) Men

Dom Burns

Copyright

Copyright © Dominic Burns. All rights reserved.

All product names, trademarks and registered trademarks are property of their respective owners. All company, product and service names used in this book are for identification purposes only. Use of these names,trademarks and brands does not imply endorsement.

Contents
Title Page
Copyright
Acknowledgments
Disclaimer
Introduction
About this book
Preface
Diagnosis
Grades & Stages
Coping
Planning
Telling People
Appointments
Tests
Treatments
Lists
Surgery
Chemotherapy
Targeted Therapy
Radiotherapy
Hormone Therapy
Clinical Trials
Self Care & Healing
Intimacy
The New Normal
Resources
Glossary

Acknowledgments

It would be remiss of me to publish this work without thanking the many, many people who have been directly involved in Jen's care and ultimately the formation of this work.

Amazing people, frankly, without whom I would have lost my dearest friend, my lover, my confidant, my everything. I will be eternally grateful.

Sleaford Medical Group
Peterborough City Hospital
Lincoln County Hospital
East Surrey Hospital
Every single person working for the NHS
Family
Friends
Colleagues
Macmillan Cancer Care
Cancer Research UK
Breast Cancer Care
Anyone who helps other people
Special mentions for:

Gary Bently, author of Quoll Writer, the open source application I used to write this book - www.quollwriter.com ;

Beth Salt of Beth Salt Photography for her camera work and digital editing - @_bethany.salt ;

Bojan, of Pixel Studio for the cover design - www.fiverr.com/pixelstudio/ ;

For Jen, the best wife, daughter (+in-law), sister, cousin, mother and friend anyone could wish for. Your grace, determination, courage and strength inspire me to be better. x

Disclaimer

No part of this work should be considered a substitute for medical advice from a qualified professional.

While every effort has been made to ensure this work is accurate, errors can occur; please ensure you verify your circumstances with your primary care providers.

Introduction

If you're anything like me, you're prepared to kill and die to protect your family. Yet very, very suddenly, you've found yourself in a position where something you probably can't even see is kicking the ever living crap out of your nearest and dearest. And you feel utterly powerless.

There's nothing you can do to help, right? Wrong! There's LOADS you can do! In fact, you're almost certainly the only one who can even do the things you can do! Don't ever lose sight of that.

So, what can you do? In short: help. "Help how!?" I hear you cry. Well, for starters, you can get organised. Synchronised. And once you're synched up, you can help with shopping, driving, cleaning, washing, washing up, tidying, lifting, fetching, carrying. But most importantly: caring. You're a solid rock of emotional support which your partner is going to absolutely crash over. Again and again. You're going to be there, in the thick of it. Every. Step. Of. The. Way. You're going to help her keep track of stuff, take her meds, get her to treatment appointments, change dressings, be her confidant, her advocate, her emotional sounding board...her everything.

That's right. You're going to be there for every appointment. For every treatment. For the beginning and end of surgery. When she goes to sleep and when she wakes up, you'll be there, like a sentinel, waiting watchfully for her every need.

OK, so maybe not all of that. You're only human, after all. But as close to that as you can get without breaking.

Going off on a wild tangent here, but do you know how many types of cancer there are? Me neither. What about how many people are diagnosed with cancer every year? Survival rates? Treatments?

Like me, you probably have only the faintest idea. But that's fine. You don't need to know everything. You're not an oncologist, a reporter or a statistician.  Even if you are, you don't need to know a whole load of unnecessary stuff in order to do your job.

What you have to know is how you and your partner get through this in one piece. How to support your partner through what, at best, is going to be a deeply unpleasant experience.

What you need is a road map and a plan.

This book aims to provide you with both.

Good luck.

About this book

Who is this book for?

This book is pretty niche. It's predominantly for men. For men whose female partner has breast cancer. In the UK.

I know, right?

That's not to say it isn't useful for same-sex relationships, male breast cancer, or even different types of cancer in different countries. Many aspects of this book can and do apply to everyone helping someone through cancer, not specifically females or males or one specific cancer type  - after all, there's a finite number of things you need to take with you when your partner's staying in hospital, no matter what cancer they have.

What this book isn't about

Despite what you might expect, this book isn't about cancer. I'm not a surgeon, doctor, oncologist, nurse or any other kind of medical practitioner. I'm just a normal bloke who's been through the sheer life shattering process that is cancer care.  Therefore, this book will not help you understand cancer - books abound on the subject, written by far cleverer people than me - nor will it help you with your relationship (much) or even tell you how to feel (or, at least, how to feel better). It's not a comprehensive guide to surgical techniques, cancer therapies or the latest homeopathic cure-all (hint: homeopathy doesn't work). It can't answer any questions about your partner's cancer, nor can it give you any information on your partner's outlook. However, it does contain good starting points and resources that will help you find out yourselves, including links to online calculators as well as useful questions to ask medical professionals. If that's what makes you tick.

What this book is for

This book seeks to provide practical, easy to follow information and advice to help prepare you for the journey ahead. Emphasis on 'practical'. Lists of stuff you're going to need to take to the myriad appointments and hospital visits. Questions you need to ask. How to get organised. Stuff you need to keep track of and how to collaborate with your partner so you walk, shoulder to shoulder, united against this indiscriminate affliction. My primary goal is to help you navigate through what is (hopefully) going to be the very worst time of your life. By hopefully, I mean that you don't experience anything worse than this, not that I hope it's bad. When deciding to write this manual, I set the goal of helping at least one couple. If the manual helps even one couple get through this experience with greater ease than Jen and me, the time was well spent.

How this book works

The book is split into distinct sections for a couple of reasons:

You're going to be flooded with information, if you're not already;

You may experience the different sections in a different order - contrary to popular belief, not all cancers require chemotherapy, surgery and radiotherapy. Nor do the different treatments necessarily happen in the same order for each person.

Each section has been written to be as stand-alone as possible, though there are overlaps - for example, will recovery from surgery impact when radiotherapy starts? You get the idea.

This 'siloing' of chapters seeks to serve one purpose: you only need to digest a single chapter in order to know what to do for the next bit of the journey, without having to read the whole book or know the journey in its entirety. This is because there'll already be too much to think about and do and trying to think about too much too soon will overwhelm even the most lionhearted.

I've also included 'our story' where I think it's appropriate. Primarily to serve as examples, but also because I've found it useful to write up the notes and journal entries. In some respects this is therapeutic for me and part of my healing process. I touch on healing and self-care in greater depth in later chapters.

Author's personal note

Where possible I have used generic product descriptions - I'm not a paid shill - but, in a few cases, such as software, I have specified the products Jen and I have used. That's not to make you use that particular product but should serve as a starting point for the type of product you're going to need. I also explain why that product was chosen and the benefits as I perceive them.

I have tried to cover everything you'll need to prepare for each step of the journey. I don't pull my punches. I try to be as down to earth and realistic as possible. I swear sometimes.

Preface

I suffer from imposter syndrome. Not the first thing that comes to mind when starting a book about caring for a partner with breast cancer, I know, but it's pertinent. It's a syndrome where the 'sufferer', despite being knowledgeable on a subject, be it through academic pursuits or real-world experience, feels like a fraud.

My defence against this relatively unknown ailment is to not speak or write about a subject I'm knowledgeable on, or seek to help others with problems in the same field, until I'm certain I understand every angle, every nuance, every factor and variable. I think it stems from childhood, but I can't pin it down to anything solid, bar a one-size-fits-all school system in the UK and constantly being told that I 'could do better'.

While on our journey I took it on myself to learn as much as I possibly could about this thing called cancer. It was overwhelming. Devastating. I quickly realised I could spend an entire lifetime on the subject and still only scratch the surface. The biological aspects alone - DNA, cellular mechanisms, even basic physiology - were far too complex for me to be reasonably expected to understand. Zooming out and looking at the bigger picture was no less daunting. The sheer magnitude of this disease, affecting almost every part of the human body, the technology brought to bear in humanity's efforts to stop it...defeated me before I began.

So I changed tack. I started reading books on broad stroke cancer subjects and then drilled down into those subjects that were directly relevant to my particular circumstances. That is, breast cancer.

Towards the end of Jen's main treatment, one of the books I read, called The Death of Cancer, by Vincent T Devita, (who, among many other humbling achievements was director of the American National Cancer Institute), struck me with a bolt of realisation. I'd found the book engrossing, not least because some of the treatments he'd helped pioneer were used to save Jen's life, but one small anecdote rang a bell deep within me.

It revolved around one Dr Paul Beeson who, during his career, coauthored a famous book about medicine. On a visit to India, Dr Beeson was presented with 25 cases of typhoid fever where two were described as 'typical' and 20 were described as 'atypical'. When Beeson asked the medical resident there why the majority were classed as atypical; the resident explained it was because the first two had symptoms that matched the description in Beeson's book, the others did not.

Up to that point, Beeson had only seen three cases of typhoid fever in his life. The resident had far more experience and far greater understanding of the condition than Beeson could ever hope to have had. This doesn't take anything away from Beeson - after all, it was Beeson who told Devita the story in the first place - but it does demonstrate how crucial experience is.

And that's when the penny finally dropped for me. I'd lived cancer care. I'd experienced many of the pitfalls, the frustrations and terrors that come with the package. And it's simply something that cannot be fully assimilated or understood without having actually experienced it. No matter how many books you read.

That's not to say I'm an expert on breast cancer and its myriad treatments, because I'm not. Before Jen's diagnosis I'd had only limited experience of breast cancer (my mother was also stricken by it) I've had no formal training in medicine (beyond basic first aid), physiology...or much else really. Truth be told, I'm not the brightest bulb on the Christmas tree. I'm just a Project Manager who has been with my wife every step of the way through her (our) cancer journey while desperately trying to get a handle on what was happening in the hopes I could help in as many ways as possible. Unlike you, I didn't have a step-by-step guide when I started the journey. I truly wish I had.

And that is why I've written this book. Partly because I have imposter syndrome but mostly so that you and others who tread this path after me have a fighting chance of dealing with it in a calm, measured way. So you can prepare. So you can see a bit further forwards. So you know when and how to act when shit goes sideways.

I genuinely hope this book helps you and, by extension, your partner, get through what's ahead of you. Once you resurface on the other side...once you are through your journey - if, indeed, this journey ever truly ends - I would encourage you to stand on your insecurities, your self doubt, guilt, anger, rage, love or whatever it is you're feeling, and strive to help other people on their journeys. And encourage them to do the same.

At the least, perhaps we can be part of the never ending ripple of people helping other people through the future histories of humanity.

With love and hope,

Dom.

September 2019.

Diagnosis

At a glance

Gather as much information as you can - get copies of everything.

Don't worry if you don't understand it straight away - you can digest it later.

Don't be afraid to ask questions but also don't panic if you think of something later.

Make a note of any questions and keep a running list.

Don't be afraid to think and talk about worst case scenarios but don't dwell on them.

Don't fill in any blanks with dark imaginings - work with what you know.

Try to keep your mind in a neutral state.

Start to prepare (see the 'Planning' chapter later in this book).

In May 2018, my wife of 20+ years, Jen, was diagnosed with a grade 3 tumour in her left breast. It was picked up 'sort of by chance' during a relatively routine procedure to drain recurring breast cysts which Jen suffered from periodically. The cysts coincided with her monthly cycles, usually without issue but, on this occasion, Jen had a particularly large, swollen and painful cyst which needed draining. As part of this procedure, routine mammogram and ultrasound scans were carried out. Manual manipulation by the consultant revealed nothing, nor did the mammogram. The sharp-eyed tech doing the ultrasound scan noticed irregularities though and an immediate biopsy took place. The biopsy shocked Jen as she wasn't prepared for it. Unusually for her, she passed out.

A week later, we're sitting in front of a surgeon (we'll call him Mr T) being told, unfortunately, that a tumour had been found. It was mixed in with the cyst tissue and measured 49 mm.

Up to that point we'd been pretty certain it was going to be all clear. We'd been 99.9% sure, you know? Jen was in her mid-40s, she didn't smoke, rarely drank, loved the gym and was generally healthy bar some rheumatoid arthritis which had been in remission for years.

But it wasn't all clear.

Little did we know that the grade meant it was aggressive, meaning it was growing quickly and likely to spread as fast. In fact, the biopsy indicated it had already spread to the lymphatic system.

As mentioned above, Jen's cancer was discovered almost by chance. I say 'almost' because it was picked up during a scan that was happening for a different reason. That's not to say the scan wasn't to encompass cancer, because clearly it did.

There are no adequate words to express how you're feeling when you get the diagnosis. I know, because I still haven't completely processed that first, terrible day.

I remember Jen breaking down, sudden shock, floods of tears and then the words "I'm too young to die! I'm not ready!". She wasn't wrong. At 45, Jen was relatively young for breast cancer, but rates for breast cancer are increasing (at record highs) for women under 50. Of course, we didn't know anything about the statistics at the time. In fact, we knew relatively little about cancer on that fateful day. Truth be told, we still do. Know relatively little about cancer, that is. But we don't need to understand it at the cellular level to know how to fight it.

I said nothing. I was, in every sense of the word, speechless. To my dull, uneducated monkey brain, Jen had just been delivered a death sentence. Numb with shock, I sat there and stared at the consultant, trying to listen to what he was telling us, trying to comfort Jen, not knowing how. Strangely, I found myself wondering how difficult it was for him to deliver such life shattering news to people.

The surgeon explained that a plan was already being put in place. A multidisciplinary team had already mobilised to fight for us. They'd discussed what needed to be done. Appointments were already in the pipeline.

We were to see an oncologist. That job title - I'd heard it before in House MD - and then I knew it was real. We were dealing with cancer.

Up to that point in my life, I thought I'd known fear. But what I'd dealt with till now had just been the occasional fight or flight response.

Jen still in tears. Both of us nodding dumbly, like we had even the slightest fucking clue what we were dealing with.

We were eventually ushered into a quiet family room to digest the news. The consultant gave us probably more time than he could spare but at no time were we hurried.

The drive home was...fraught. I still didn't know what to say. But I knew platitudes and positive bullshit would be transparent. We...I...needed something concrete, something solid we could latch on to, something that would somehow reassure Jen, us. And then I found it. Something realistic. I told Jen, no matter what happened, that I'd be with her every step of the way. It was the only thing I was sure of at that point.

I'd like to say that I retreated into logic from there onwards, but that would be a lie. Fear consumed me. Us. Uncertainty. Doubt.

A few days later we met the oncologist and Jen's Key Worker.

Jen was going to have chemotherapy, targeted therapy, surgery, hormone therapy and possible radiotherapy (they said possible but it was actually certain - I'm guessing they didn't want to overload us). Surgery would be dictated by the chemotherapy. The chemotherapy was being used to slow or stop the tumour's growth while simultaneously shrinking it. Jen would need scans. Find out where else it might be, if at all, and check her heart so any damage could be picked up along the way - chemo can do that, you see. We hardly knew what any of these things really meant - that is, how they might impact our lives. Suffice to say we were terrified.

Jen had to read and sign chemotherapy consent forms. Three weeks later, she was having chemotherapy. From diagnosis to chemotherapy, it took a little under four weeks.

Things moved faster than we could have realistically prepared for. They probably will for you, too, initially.

As you are using this book, it seems very likely that you've already had the diagnosis and, sadly, alarmingly...terrifyingly, your partner has breast cancer. I know this makes the chapter somewhat moot but for the sake of completion (and not a little catharsis on my part), I still think it's useful to include it. For those instances where a diagnosis hasn't yet taken place this is what I wished I'd done, what I wished I'd known and, subsequently, what you need to know and do.

OK.

Take a deep breath.

Release it slowly.

Take another.

Calm yourself.

You're with your partner, sitting by the consultant as they tell your partner she has cancer. The focus will be entirely on your partner. Your partner is in acute distress and she'll be looking for immediate comfort from the truth, the reality of where she is. You'll instinctively want to provide comfort. Don't tell her everything's going to be OK. Don't tell her she can't die because you can't live without her.

You want answers. At this point of the process, your consultant probably knows only a fraction more than you as to what's happening. Basically, they will know the size and grade of the tumour(s), where the cancer is currently known to be situated and only very sketchy details as to anything else. These details will likely be based on scan and biopsy results and the consultant's experience with other patients (which, you will come to learn, are almost entirely useless as a baseline comparison). The consultant will very likely not be able (or be very reluctant) to answer questions about prognosis (outlook or life expectancy), nor will they be able to tell you much more than broad strokes about how it's going to be dealt with. At this stage, they don't even know if your partner is going to be on the curative or palliative care path.

Inside you're going to be screaming for answers, not least of which: Why Us!? You'll want to (and should) ask: Is it terminal? How far advanced is it? How do we get rid of it? Is it something we did? Is my partner going to die?

The consultant simply may not have the answers yet. But they will. And quickly.

A process of discovery and rapid planning will be in full swing already - they will almost certainly have an idea if the tumour is receptive to targeted therapies such as certain hormone treatments and/or protein receptors. Don't be shocked to hear your partner has already been scheduled for surgery or chemotherapy. Get the dates. Gather as much information as you can realistically handle. Then gather some more. The specialist nurse will furnish you with everything you need to know (at that point) and more. They're keenly aware that you're in shock, acute distress and aren't in a receptive frame of mind for processing information.

Try, if you can, to get protein names, grades, stages, prognosis, treatment plans, contact numbers, people's names - as much as possible and in writing if you can. This will stand you in good stead for the 'Planning' and 'Telling People' stages.

Once you've left the clinic, above all else, try to remain calm and rational. Use logic - you don't have all the data yet, so don't jump to any conclusions. Cancer isn't necessarily a death sentence. In fact, more and more often, it's a temporary (albeit deeply challenging) hiccup in an otherwise very long and natural lifespan. Until you have all the information that will allow you to truly understand your position, don't let your imagination put you through fear and misery otherwise you'll either go through it for nothing (if it's completely treatable with excellent prognosis) or you'll put yourself through it twice; once when you imagine it and then when you find out.

I know it's difficult - particularly where waiting for scan results is concerned. Your partner is probably in an emotional tailspin because she's facing her mortality and you have the distress of both having to watch her do that, as well as the possibility of losing your wonderful partner. But you have to remain steadfast. Freaking out won't help either of you. Of course, you and perhaps especially your partner, have every right to rant and scream and smash things - if it makes you feel better, then go for it. But it won't make you feel better. The only thing that likely will is knowing and accepting the facts, and time to process what's happening.

You'll have to take on board a lot of new information in what feels like a very short space of time. Pace yourself. You'll reach a point where a lot of it becomes second nature but you don't need to absorb it all at once. You can't absorb it all at once - partly because there's suddenly an influx of information, and partly because the information you need to make decisions simply doesn't exist yet. Don't worry if you come up with questions, or even if you don't come up with questions. When they do come to you, write them down on a piece of paper or your phone to ask later. You'll be having a lot more meetings with the care team in the immediate future, and you can also call the breast care team or your key worker if you have any questions or issues that need urgent attention. Don't sit and stew - if you have doubts, fears, anything - speak to someone who can help.

Obviously, I can't expound on how you're feeling, but I can draw on my experience and take a pretty good guess. I'm going to go with 'Pretty Fucking Awful'. It's going to be like that for a bit, I'm afraid. Even if the tumour's small and not particularly aggressive, it's still cancer. And that sucks.

Grades & Stages

It took me a while to get my head round the grades and stages - largely because we were met by a wave of information and it simply took a long time for it to sink in. It will help you zero in on what's happening to your partner if you know what grade and stage she has so you can focus on the bit that's pertinent to you. Take your time with this information and don't jump to conclusions without solid, scientific facts. Don't fill in blanks with 'what ifs'. It won't help.

So, very basically, the grade tells you what the cancer is like, the stage tells you where it is.

The following information is from NHS Online and Cancer Research UK. Specifically, the grade information is from the NHS website and the stage information from Cancer Research UK. Data as at: 27/04/2019 and edited by me in the hope it is more easily digestible. The reason I used two different sources is because the stage system on the NHS page doesn't reflect that used for breast cancer. Similarly, the Cancer Research UK page detailing grades wasn't particularly user friendly. I have included references at the foot of the page.

Grades

The grade for breast cancer is scored from 1 to 3, with 1 being 'good' and 3 being 'worst'. It essentially boils down to how the tumour cells look under a microscope and how fast they are likely to grow.

Grade 1 cells look like normal cells and don't grow quickly.

Grade 2 cells don't look much like normal cells and grow faster than normal.

Grade 3 cells look nothing like normal cells and grow very quickly.

The tumour grade will help your multidisciplinary team decide the best course of treatment. For example, a grade 1 tumour may 'only' need local surgery and radiotherapy. In this context, 'local' means local to the tumour. A grade 3 tumour may need 'systemic' treatment, such as chemotherapy, which affects the whole body.

Any grade may potentially need radiotherapy, hormone therapy and/or targeted therapy either before, during and/or after the main surgical treatment.

Stages

There are different stage systems for different cancers which can add to confusion, so we'll focus solely on breast cancer, which is scored from 1 to 4, with one being 'good' and four being 'worst'. Each of the stages then has additional groups (A, B and so on), so it's more complex than the grade but does give the added benefit of a clearer picture. And we're all about the facts here. Beware that the staging system can be confusing, which is why it helps to know the stage so you can focus on the one that relates to you and your partner.

Stage 1 means it's been caught early.

Stage 1A is a tumour measuring 2 cm or less and has not spread from the breast.

Stage 1B is a tumour measuring 2 cm or less with cancerous cells found in lymph nodes near the breast.

Or

No tumour in the breast, but cancerous cells in lymph nodes near the breast.

Stage 2 also means it's been caught early.

Stage 2A either the tumour is 2 cm or less or there is no tumour and cancer cells are found in up to three lymph nodes of the armpit or close to the breastbone.

Or

The tumour is between 2-5 cm and there are no cancerous cells in any lymph nodes.

Stage 2B the tumour is between 2 and 5 cm and there are small groups of cancer cells in the lymph nodes.

Or

The tumour is between 2 and 5 cm and the cancer has spread to between one and three lymph nodes of the armpit or near the breastbone.

Or

The tumour is larger than 5 cm and hasn't spread to any lymph nodes

Stage 3 is known as 'locally advanced' and has spread to the lymph nodes near the breast, the skin of the breast or the chest wall.

Stage 3A the tumour can be any size or there is no tumour in the breast and cancerous cells are found in between four and nine lymph nodes of the armpit or near the breastbone.

Or

The tumour is over 5 cm and there are small groups of cancer cells in the lymph nodes.

Or

The tumour is over 5 cm and has spread to three lymph nodes in the armpit or near the breastbone.

Stage 3B the tumour has spread to the breast's skin or chest wall. The chest wall includes the areas around the lungs and can include ribs, muscle, skin and connective tissues. The cancer has broken the skin or caused swelling and may have spread to up to nine lymph nodes of the armpit or near the breastbone.

Stage 3C the tumour can be any size or there is no tumour but cancer is in the breast's skin, causing swelling or an ulcer, and has spread to the chest wall. It has also spread to one or more of the following:

Ten or more lymph nodes in the armpit;

Lymph nodes above or below the collar bone;

Lymph nodes in the armpit and near the breastbone;

Stage 3C breast cancer is further divided into operable and inoperable categories.

Stage 4 is also known as advanced, secondary, or metastatic breast cancer. The tumour can be any size, the lymph nodes may or may not contain cancer cells but the cancer has spread to other parts of the body.

Stage 4 does not have subtypes, though it's worth noting that, while considered largely incurable and, more often than not, inoperable, this doesn't necessarily mean it's untreatable, nor does it necessarily mean your partner has been given an instant death sentence. Today's medicine can often slow or temporarily stop the disease's progress in its tracks, giving you and your partner precious, precious time together. However, the outlook for survivability with current medicine isn't good and you need to consider this and discuss it thoroughly with your primary care providers if your partner is diagnosed with stage 4 breast cancer.

Data taken and modified from the following pages as at 27/04/2019

Stages
https://www.cancerresearchuk.org/about-cancer/breast-cancer/stages-types-grades/number-stages

Grades
https://www.nhs.uk/common-health-questions/operations-tests-and-procedures/what-do-cancer-stages-and-grades-mean/

Contains information from NHS Digital, licenced under the current version of the Open Government Licence

Coping

At a glance

Have coping strategies in place.

Don't think about 'what ifs' - keep your mind in the present.

Deal with one thing at a time.

Prioritise what's directly in front of you.

Don't be afraid to ask for help.

I've put this as a separate special chapter because I think it's an extremely important component in treatment and recovery to have coping mechanisms. Jen and I used them to get through the ordeal. You will need coping mechanisms too.

I've put this chapter near the beginning of the book because, well, how do you cope with the news of cancer? How do you cope with the treatment? The following chapters hopefully go some way to helping you on the path of taking effective action, getting organised and whatnot, but this chapter is for when you're in those...moments...when you don't know what to think.

It's difficult to overstate the levels of profound, persistent stress and anguish you and your partner are likely to feel both in the immediacy of receiving such shitty news, but also through the near constant demands of treatment and recovery interwoven through your day-to-day activities. You may feel as though you've lost control of your lives. To a certain extent you have. Strangely, the wake up call: 'that you don't truly have any control over your life' can be a stressor in its own right.

So part of the puzzle is to recognise when you're feeling stress and having effective mechanisms in place to help you relieve the levels of stress you feel. As with so many things in life, there are clearly good and bad approaches to stress alleviation and, even with the good methods, different degrees of success for different people.

To help you get a structure of your own in place, consider one or some of the following approaches:

Take a deep breath...and relax....

There's a lot to be said for breathing. In this context, controlled deep breathing. Couple it with incremental muscle relaxation - where you start by relaxing each part of your body from, say, the feet, all the way up to your face - you have a recipe that makes things just a little more bearable. Best to do this laying down in a darkened room, preferably on a soft surface like a bed or sofa.

Meditate

You can progress your relaxation to meditation. My personal favourite is Zen meditation - look it up, there's loads of literature on it and no you don't have to become a Buddhist or be in any way religious. That said, it can be a deeply 'spiritual' experience even for the agnostic (me and Jen) and dare I say the atheist.

Get (or stay) physical

Exercise is another great way to clear the mind and give yourself a break from the trials of daily life. It doesn't have to be a sport - yoga, Thai chi or even simply walking around the block or, better still, in the countryside, is extremely beneficial and is proven to improve mindset as well as physical fitness. Personally I use the treadmill at the gym, put my headphones on and read an e-book.

Hobbies

If you don't have a hobby, now can be a good time to start. What interests you? Jen found those colouring books for adults to be very therapeutic. OK, it's not so much a hobby as a time killer. Then again, I guess that's what a hobby is. She used to like cross stitch, though hasn't done any for a while. I like messing around with computers - especially content management frameworks. Yeah, I know.

Look at how you think

It's worth looking into Cognitive Behavioural Therapy and/or mindfulness as these disciplines can be very useful tools in the fight against negative thought streams (as I call them) as well as depression, anxiety and dark moods. It can be particularly effective in helping you identify negative, circular thought patterns while giving you the ability to deconstruct, analyse and reconsider thoughts that are pulling you down or holding you back.

Music

Chilling out to some tunes (perhaps even having a mad boogie in the living room) can be very therapeutic.

Films

Watching a dumb movie that you don't have to think about too much (guilty confession, I once spent an entire day watching animated films because they had simple stories, lots of fun and bright colours) can be a great way to take your mind somewhere else, giving your subconscious vital time to process stuff.

Games

Console, phone, handheld and/or board games can be great to keep the mind active on something challenging, enjoyable and, perhaps most importantly, distracting.

Reduce your load

Don't take on too much and be comfortable politely declining when someone asks you to do something (unless it's your partner, of course!).

See it, list it

Keep tabs on the things you feel are beyond your control or you're struggling to manage. Ideally a running list. This means when the fleeting negativity comes about, you can later take positive action against whatever it was when you're feeling stronger...or when you can get help.

Get help

Don't be afraid to ask for help. No-one in their right mind would expect you to handle everything on your own. That includes asking help from professionals who deal with this shit on a daily basis.

Sleep

Make sure you get plenty of 'healthy' sleep. Ideally try to go to bed and wake up at the same times and aim to get between seven and eight hours of sleep a night. A scheduled sleep pattern is essential for mental hygiene. Keep an eye on sleep at other times as it may be a sign of something more sinister going on - think depression or exhaustion.

Laugh

Don't feel guilty for having fun when you can. It's OK to laugh and joke. In fact, I'd go so far as to say it's essential to get through this in one piece. Laughter really is a great healer. So if you can spend some time with your partner watching a rom com, a stand up comedian or whatever, it will have a positive impact on you both.

Ideally these things should be, as best as you can with the somewhat unpredictable nature of cancer treatment and care, at set times of the day. Of course you can't do them all at once, and it's a question of finding out what works best for you. But it's vitally important that you have at least one of them in your arsenal of coping strategies, so make sure you keep a slice of time carved out just for you each day to work on and practise your coping mechanisms. Ideally you should try them all until you find a good fit. And do it before you find yourself in a dark place as by then you may be too overwhelmed physically or mentally.

All of this is useless, of course, unless you're able to identify the things that are causing you stress - particularly the things that cause stress 'spikes'. By recognising when they occur, you're better armed to defend against them and ward them off - especially if you have coping mechanisms in place.

A good example of this is when you're thinking about 'what ifs'. JUST DON'T! OKAY!? Other indicators of negative reactions to stress may include one, some or all of the following:

Increases in drinking (caffeine and/or alcohol), smoking, eating, gambling or similar vices (such as illicit drug use or risk taking).

Sleeping to avoid reality or general lethargy.

Ignoring problems in the hope they go away.

Dwelling on negative possibilities or outcomes.

Violent outbursts, either emotional or physical.

Anxiety, dread and or general feelings of fear (adrenaline, increased heart rate, butterflies in the stomach).

Lack of emotion.

If you experience any of the above, don't ignore it and don't normalise it. Recognise it for what it is, try to identify what happened to trigger it and deploy a coping mechanism. Even if it's just a 'time out' from the day. Make sure you're keeping an eye on yourself.

From my experience, the human mind has a knack of taking information and extrapolating different scenarios. It's also alarmingly good at filling blanks with utter rubbish. A good example of this is superstition. (Thanks, Mum, for that whole 'Mr Magpie' bullshit....)

You will almost certainly start wondering 'what if'. Like, 'what if' the operation goes wrong, or the therapy doesn't work, or I'm not strong enough to do this or the cancer spreads...or has already spread. It's scary stuff to think about. But also consider that 'what if' we die in a car crash on the way to the hospital? Probably because you weren't concentrating on the road worrying about what ifs....

My point is, this line of thinking does NOT help. It may have been useful when we were nomadic hunter gatherers trying to stay alive in a hostile environment, but in the scenario we now find ourselves it has almost zero utility. Over time, these questions WILL wear you down. Even break you. It takes some mental agility and a strong will, but try to catch yourself in the act of having these thoughts - because you most assuredly will - and stop yourself. Pull yourself back to the present. The here and now. Focus solely on the FACTS. On what you KNOW. The things you can directly influence. Things you can do to aid a successful outcome. Focus on planning, allowing yourself to rest, giving yourself and your partner time and space to think, on collecting yourselves.

Statistics don't help either and they certainly can't tell you how your situation is going to turn out. Nor should you seek out horror stories - they exist on the internet aplenty. None of these stories will be the same as your partner's. Breast cancer treatments are as individual as the people receiving them - no two are EVER alike. They're like fingerprints. DNA signatures. One offs. Just because someone's Auntie once had a bad reaction to the same medication your partner's going to have, it doesn't automatically follow that your partner is going to encounter the same difficulties. It's a meaningless anecdote. There are so many variables involved that you simply cannot know, so there is no benefit to holding the story up for comparison. Case history, physiology, age, stamina and any number of thousands of other factors in combination means you simply CANNOT compare stories. Clear? Good.

Try to keep your mind in a neutral state. Saying 'you're going to be OK' is just as speculative as 'you're going to die'. So, the only logical recourse is to focus on logic and reason. Deal with what's directly in front of you, step by step, until you're past it and on to the next step. That can be as simple as being prepared for a hospital visit for a scan. Don't think about the results because you simply can't know them. If it were possible to know the test results before the test there'd be no need to take the test, would there?

That's not to say you shouldn't think and talk about worst case scenarios - like death - because they're very real possibilities - indeed, they're actually inevitabilities. After all, we're all going to die, it's just a question of when and how. But wallowing in misery because you're going to die one day would defeat the point of being alive, wouldn't it? So you mustn't dwell on them. Nor should you let these thought patterns spoil the precious, precious time you have together.

Consider the following statements:

You can live your life, be miserable and afraid, then die;

You can live your life, be happy and brave, then die.

Both statements are entirely possible. Therefore, if you were given a choice between the two, which would you think to be the better choice?

Of course, life is rarely so black and white, and sometimes it's difficult to see a way through the dark thoughts. It takes considerable mental discipline and maybe even a little desperation, but whenever you catch your mind wandering down a dark rabbit hole, pull back. Focus on the present, what you know to be facts.

Consider hobbies and healthy stress outlets like martial arts or other forms of physical activities. That said, you may need to reduce regular activities that take you away from your partner when she is most vulnerable.

Plan ahead! Making yourself aware there are hardships in front of you actually reduces stress in the long run. They've done tests with rats that prove this. Understanding what's in front of you gives you a far greater chance of overcoming it. A great deal of fear is born of ignorance - fear of the unknown.

A note on fear and bravery - bravery cannot exist without fear. Bravery isn't the absence of fear, it's the overcoming of fear. It's doing what needs to be done despite what appear to be overwhelming odds. When your stupid monkey brain is telling you to run and hide, but you step up and get it done no matter what.

I can't tell you not to be afraid because it's not possible to switch that shit off. But you can have quiet resolve. Deal with each step of the process. Don't look too far ahead. Be mindful. Face the facts. Then act.

Irrespective of whether you believe in a god or not, you need to make peace with the powers that be if you're to move forward. I can't say how you should approach this because everyone is different. Personally, Jen and I are agnostic, believing it's no more correct to say there's a higher power than it is to say there isn't. So, we seek meaning through the beauty of life, the universe...and everything (apologies to Douglas Adams fans). It's a philosophical approach, with just a hint of 'Pascal's Wager'.

In truth, I'm somewhat envious of those who have faith in a greater power - particularly those who believe something better than this life happens afterwards. It must be a great comfort thinking that way.

Suffice to say, we find comfort in closeness, shared experiences and helping others less fortunate. A sunset. A flower. There's plenty of food for spirituality if you look in the right places, be it marvelling at the myriad spirals found throughout nature or praying to the sun god, Ra. Whatever your poison, take solace in it, drink it deep. Just being alive in the universe is a wondrous, terrifying, awe-inspiring thing. Even if you're cooped up, the imagination can take you to places and experiences that are even beyond the bounds of possibility.

Embrace and cherish each moment, no matter how terrible it seems, because it's all temporary. It's all fleeting. No matter how unbearable it seems, no matter how much it pains you to see the love...the shining star...of your life suffer, you can get through this. You can help her get through this!

Talking to people - either those who have already 'lived the dream', so to speak, or people who are trained to help in these scenarios can be extremely useful, both as a means of letting the feelings out but also to gain some much needed perspective. I would thoroughly recommend the Macmillan forums for talking to people in a similar boat - you may even find some solace in helping other people nearer the beginning of the journey.

If you're really struggling with life and your outlook, consider speaking to your doctor who can refer you to counselling or prescribe appropriate medication.

If that seems too extreme do consider calling one of the numerous support charities, such as Macmillan, Breast Cancer Care and Maggies. You'd be surprised how useful it is to talk to someone who's 'outside the problem'.

These lessons are ones I've had to learn myself. The hard way. Take what I've said to heart - these aren't just glib, page filling platitudes, they're very real lessons that have been proven to work because I've lived them.

Try to take a philosophical approach to life, because you don't know what's round the corner - it could be good or bad, though chances are it's a mixture of both.

Finally, take each step of the journey one at a time. Don't try to look too far ahead, besides basic scheduling, and don't, don't, DON'T think about what ifs.

I'll say that one more time - DO NOT THINK ABOUT WHAT IFS!

Planning

At a glance

Gather as much information as you can - get copies of everything.

Don't worry if you don't understand it straight away - you can digest it later.

Don't be afraid to ask questions but also don't panic if you think of something later.

Make a note of any questions and keep a running list.

Don't be afraid to think and talk about worst case scenarios but don't dwell on them.

Don't fill in any blanks with dark imaginings - work with what you know.

Try to keep your mind in a neutral state.
Shared calendar app (ie google calendar)
Shared todo list app (ie google keep)
Shared journal app (ie Journey)
Digital camera (ie on phone)

Multidisciplinary Team will usually consist of some or all: Surgeon/Consultant, Oncologist, Radiologist, Key Worker, Breast Care Nurse

Establish what treatments are planned (care/treatment plan)

Get dates, times and locations for the treatments

I think it was the shear lack of control I felt that drove me to become super organised. The first thing I did, once I was 'over' the initial shock - at least, once I was able to think clearly - was to buy a folder and 50 polythene 'pockets' so all of the paperwork we'd already amassed could be usefully stored and organised. Along with the folder I also bought several notebooks.

We already had a flurry of appointments which Jen had written in her personal diary, so I created a new Gmail account on Google and added the account to both our phones, my laptop, Jen's PC and both our tablets. This enabled us to have a shared calendar, along with Google's 'Keep' application which is really useful for todo lists and capturing other information. I also installed an app called 'Journey' which also uses a Google account for authentication, enabling Jen and I to keep longer notes, share thoughts and feelings as well as keep track of things in general - this was also installed on our respective computers and tablets. Armed with these tools, we were much better prepared for the crises ahead. At the time I remember thinking it wasn't enough - I needed to do so much more, I needed to fix things - but, in retrospect, that small action made such a massive difference to how we managed the various appointments, lists, paperwork and masses of information. It enabled us to remain synchronised and coordinated so we both always knew what we were doing and when. Both of you need to commit to using the system or it won't work as effectively but if you do things will be considerably less stressful as you move forward.

We also relied heavily on Google 'Maps' as our designated treatment hospital is an hour away from us. 'Maps' enabled us to route around traffic incidents and get there on time. We always left 20-30 minutes before we were due to factor in parking - it's a flip of a coin whether there's ample spaces or whether you have to park in a tree half a mile away. 'Maps' allowed us to check estimated travel time on the day, too, so we could adjust leaving times accordingly.

The 'Calendar' app was also used for home drug regimens. Some weeks I had to inject Jen with a white blood cell boosting medicine (Filgrastim). Other times, Jen would have to take steroids, antibiotics, anti-emetics and so forth on specific days or at different times of the day. Having the reminders made sure she remembered and I was reminded to follow up and make sure she'd taken them.

I can't overstate how much information, how many reminders and how many appointments you'll be dealing with, so getting organised is absolutely key to managing it all effectively. If you don't, it'll be another headache you could do without.

Because Jen's tumour was a grade 3, it was decided she would first have chemotherapy (neoadjuvant), targeted treatment, surgery,long-term hormone therapy and 'possibly' radiotherapy. Although radiotherapy was suggested as possible, we later found out it had pretty much been preordained by the type and size of the tumour.

The chemotherapy was to consist of seven rounds, with two different drug combinations. Each round would be delivered at three-weekly intervals.

There are many things you will need to think and talk about, ranging from finances to death. Don't shy away from them - it's healthy to think and talk about them, though only you will know when it's best to broach things like death as it's likely to be a more sensitive subject for your partner than you. Though obviously that's not going to be the case in every relationship. Given a choice I would prefer to die before Jen. Selfish, I know, but losing Jen is unthinkable to me.

Here's a brief list of things you may want to think and act on:

Wills - what you have and to whom it goes.

DNRs - does your partner want to be resuscitated in the event of heart failure.

Respect/Advance care plan - this covers every aspect of your partner's care in the event she is unable to voice her wants and needs. Look into the 'Gold Standard Framework' as a starting point.

Funeral arrangements - particularly final wishes with regards to being laid to rest - also financial aspects.

Bucket list - what does she want to do with her life? What do you want to do with your lives together?

Depending on the diagnosis, you will either get a date for surgery, or a date first for chemotherapy and/or radiotherapy and then one for surgery. Similarly, the type and grade will also dictate whether targeted and/or hormone therapies will be in play.

Once the consultant or doctor has given you this news, your partner will be referred for her treatment which would have been discussed and decided by your multidisciplinary team, consisting of various domain experts and specialists in their fields to determine what angles of attack are to be taken. Again, this will dictate whether your partner is having chemo, surgery, radiotherapy or a combination of the three...and what order they will occur in.

You will probably struggle to retain the information you're presented with in some or many of your appointments. It's worth asking the person you're speaking to if you can record the conversation for later review, though it's possible they will refuse. Whether you decide to record it anyway or if you even ask in the first place is entirely on you. I can't advocate that you do, and it's definitely discouraged if not outright illegal...but I can tell you that the information you're initially presented with may be too dense to usefully capture by hand. In this regard I think there's a certain amount of 'Expert Syndrome' at the various meetings. You're dealing with people who discuss this sort of information multiple times on a daily basis and oftentimes we felt there was some, albeit unconscious, expectation on their part that we should already have a basic understanding of chemotherapy, oncology, breast surgery or whatever. You should definitely be issued with the relevant paperwork covering the treatment plan, which will include the possible risks and side effects. Your partner will also have to sign consent forms in order for treatment to be given. As an aside, it seems odd to me that not having treatment will result in almost certain death, so it would make more sense for there to be a form that refuses treatment, rather than the other way round. But I digress.

Getting organised - being ruthless about filling in your calendar application and keeping notes about what's going on - is essential. Understanding what's going to happen is also important because you will need to effectively communicate this information to others in a way that they understand. Take some solace from the fact that if you can explain it to someone in simpler terms it generally means you have a good grasp of the subject.

To get some idea of what may be ahead, I have included a timeline of events from a real world example of treatments that Jen had (and in some cases is still having as I write this). Note that I have stripped out hundreds of normal, day-to-day entries that cover family, work, house, car, pets and general bits and pieces. It's important to stay on top of those too! I don't suggest you read the whole of this - it gets boring very quickly - but run your eye down it and appreciate this is more or less what's in front of you.

SubjectStart DateEnd DateStart TimeEnd Time

Echo appointment10/05/201810/05/201814:15:00              15:15:00

Last methotrexate 11/05/201811/05/201808:00:00              09:00:00

Oncologist11/05/201811/05/201809:00:00              10:00:00

Hygenist15/05/201815/05/201812:20:00              13:20:00

Bone scan16/05/201816/05/201812:15:00              13:15:00

Collect letter from breast clinic 16/05/201816/05/2018              13:00:00              14:00:00

Oncology consent app18/05/201818/05/201810:45:00              11:45:00

CT scan19/05/201819/05/201809:30:00              10:30:00

Dentist22/05/201822/05/201810:10:00              11:10:00

New patient talk22/05/201822/05/201816:30:00              17:30:00

Chemo 124/05/201824/05/201810:00:00              11:00:00

Insurance docs from Oncologist24/05/201824/05/2018              09:00:00              10:00:00

Hormone jab 124/05/201824/05/201808:00:00              09:00:00

Scan Results24/05/201824/05/201808:00:00              09:00:00

Injection25/05/201825/05/201807:00:00              08:00:00

Steroid Tablet25/05/201825/05/201814:00:00              15:00:00

Injection26/05/201826/05/201807:00:00              08:00:00

Injection27/05/201827/05/201807:00:00              08:00:00

Injection28/05/201828/05/201807:00:00              08:00:00

Injection29/05/201829/05/201807:00:00              08:00:00

Doctor30/05/201830/05/201815:20:00              16:20:00

Flucanzole 1 daily tab for 730/05/201805/06/201809:00:00              10:00:00

Injection30/05/201830/05/201807:00:00              08:00:00

Ciprofloxacin 1 tab twice a day31/05/201831/05/2018              09:00:00              10:00:00

Look good feel good31/05/201831/05/201810:00:00              11:00:00

Phone call check up31/05/201831/05/201813:00:00              14:00:00

Ciprofloxacin 1 tab twice a day02/06/201802/06/2018              09:00:00              10:00:00

Ciprofloxacin 1 tab twice a day03/06/201803/06/2018              09:00:00              10:00:00

Ciprofloxacin 1 tab twice a day04/06/201804/06/2018              09:00:00              10:00:00

Ciprofloxacin 1 tab twice a day05/06/201805/06/2018              09:00:00              10:00:00

Ciprofloxacin 1 tab twice a day06/06/201806/06/2018              09:00:00              10:00:00

Oncologist08/06/201808/06/201811:30:00              12:30:00

Phone Breast Clinic11/06/201811/06/201815:00:00              16:00:00

Dexamethasone 2pm13/06/201813/06/201814:00:00              15:00:00

Dexamethasone 9am 13/06/201813/06/201809:00:00              10:00:00

Chemo 214/06/201814/06/201810:30:00              11:30:00

Constipation tab14/06/201814/06/201820:30:00              21:30:00

Dexamethasone 9am 14/06/201814/06/201809:00:00              10:00:00

Headstrong14/06/201814/06/201809:30:00              10:30:00

Prescription in take home bag14/06/201814/06/2018              11:00:00              12:00:00

Zoladex. Check prescribed14/06/201814/06/201810:30:00              11:30:00

Injection15/06/201821/06/201808:00:00              08:00:00

Flucanzole 1 daily tab for 718/06/201824/06/201808:00:00              09:00:00

Phone Breast Clinic re Wig18/06/201818/06/201811:00:00              12:00:00

Ciprofloxacin 1 tab twice a day20/06/201826/06/2018              11:00:00              12:00:00

Macmillan Look Good Feel Good21/06/201821/06/2018              10:00:00              12:00:00

Nurse app Diane28/06/201828/06/201811:30:00              12:30:00

New sharps box29/06/201829/06/201810:30:00              11:30:00

Oncologist blood29/06/201829/06/201810:45:00              11:45:00

Orthotics wig29/06/201829/06/201813:00:00              14:00:00

Collect prescription04/07/201804/07/201814:00:00              15:00:00

Phone re prescription 04/07/201804/07/201810:00:00              11:00:00

Start constipation meds04/07/201804/07/2018              08:00:00              09:00:00

Steroid Tablet04/07/201804/07/201809:00:00              10:00:00

Steroid Tablet04/07/201804/07/201814:00:00              15:00:00

Chemo 3 (NHS 70 years)05/07/201805/07/2018              10:00:00              11:00:00

New sharps, zoladex. Long flush.05/07/201805/07/2018              10:30:00              11:30:00

Steroid Tablet05/07/201805/07/201809:00:00              10:00:00

Flucanzole 1 daily tab for 709/07/201815/07/201810:00:00              11:00:00

Ciprofloxacin 1 tab twice a day11/07/201817/07/2018              12:00:00              13:00:00

Phone Key Worker 11/07/201811/07/201810:00:00              11:00:00

Blood test 12/07/201812/07/201812:00:00              13:00:00

Collect Jens prescription12/07/201812/07/2018              10:15:00              11:15:00

Dr Appt for EAR16/07/201816/07/201811:40:00              12:40:00

Prescription16/07/201816/07/201811:00:00              12:00:00

Blood test 20/07/201820/07/201809:00:00              10:00:00

Oncologist app20/07/201820/07/201811:45:00              12:45:00

Dr Appt for EAR23/07/201823/07/201811:40:00              12:40:00

Breast Afternoon24/07/201824/07/201812:00:00              13:00:00

Steroids25/07/201825/07/201809:00:00              10:00:00

Steroids25/07/201825/07/201814:00:00              15:00:00

Chemo 426/07/201826/07/201809:30:00              10:30:00

Steroids26/07/201826/07/201809:00:00              10:00:00

Steroid Tablet27/07/201827/07/201809:00:00              10:00:00

Flucanzole 1 daily tab for 730/07/201830/07/201809:00:00              10:00:00

Blood test SMG01/08/201801/08/201808:45:00              09:45:00

Ciprofloxacin 1 tab twice a day01/08/201801/08/2018              09:00:00              10:00:00

Phone Key Worker 01/08/201801/08/201811:00:00              12:00:00

Nurse and doc02/08/201802/08/201811:50:00              12:50:00

Breast ultrasound06/08/201806/08/201810:30:00              11:30:00

Echocardiogram 06/08/201806/08/201808:15:00              09:15:00

Blood pressure Dr surgery08/08/201808/08/201817:20:00              18:20:00

Immodium Adcal constipation10/08/201810/08/2018              08:30:00              09:30:00

Oncologist10/08/201810/08/201811:45:00              12:45:00

Chemo 516/08/201816/08/201810:30:00              11:30:00

Surgeon30/08/201830/08/201809:00:00              10:00:00

Oncologist Bloods31/08/201831/08/201812:15:00              13:15:00

Collect prescription04/09/201804/09/201808:00:00              09:00:00

Cottpn wool buds04/09/201804/09/201813:10:00              14:10:00

Breast cancer support group05/09/201805/09/201812:00:00              13:00:00

Order meds05/09/201805/09/201819:30:00              20:30:00

Collect Jens prescription12/09/201812/09/2018              10:00:00              11:00:00

Chemo 613/09/201813/09/201812:00:00              13:00:00

Surgeon19/09/201819/09/201816:00:00              17:00:00

Echocardiogram 25/09/201825/09/201808:15:00              09:15:00

Oncologist blood28/09/201828/09/201811:30:00              12:30:00

Hospital admission30/09/201830/09/201806:00:00              07:00:00

Jen's drugs02/10/201803/10/201800:00:00              00:00:00

Dr if pessary not good 03/10/201803/10/201809:00:00              10:00:00

Phone breast nurse re psych app03/10/201803/10/2018              08:00:00              09:00:00

Phone Key Worker and dentist03/10/201803/10/2018              10:00:00              11:00:00

Chemo 704/10/201804/10/201810:30:00              11:30:00

Phone breast clinic re surgery 08/10/201808/10/2018              10:00:00              11:00:00

Jens prescription09/10/201809/10/201810:30:00              11:30:00

Prescription ready?10/10/201810/10/201808:00:00              09:00:00

Day 811/10/201811/10/201812:00:00              13:00:00

Phone Dr app12/10/201812/10/201808:00:00              09:00:00

Phone KW re herceptin/hormone16/10/201816/10/2018              11:00:00              12:00:00

Phone rheumatology 16/10/201816/10/201811:15:00              12:15:00

Dr has put order in for Goserlin 16/10/201816/10/2018              10:00:00              11:00:00

Psychological ass17/10/201817/10/201815:00:00              16:00:00

Phone Dr to make app23/10/201823/10/201814:30:00              15:30:00

Surgeon reconstruction app24/10/201824/10/201809:00:00              10:00:00

HERCEPTIN Right leg29/10/201829/10/201815:00:00              16:00:00

Dr for goserlin numbing cream?30/10/201830/10/2018              09:30:00              10:30:00

Collect prescription and wee pot02/11/201802/11/2018              14:05:00              15:05:00

HORMONE inj02/11/201802/11/201814:00:00              15:00:00

Numbing cream ON02/11/201802/11/201812:30:00              13:30:00

Pre Assessment surgery07/11/201807/11/2018              12:00:00              13:00:00

5wks post chemo08/11/201808/11/201808:00:00              09:00:00

Herceptin booked? 13/11/201813/11/201808:00:00              09:00:00

6wks past chemo15/11/201815/11/201808:00:00              09:00:00

Jen Bra16/11/201816/11/201809:00:00              10:00:00

Bra hunt20/11/201820/11/201811:00:00              12:00:00

Herceptin due LEFT LEG20/11/201820/11/2018              15:00:00              16:00:00

Hospital MRSA etc24/11/201824/11/201810:00:00              11:00:00

Cream on for injection26/11/201826/11/201809:00:00              10:00:00

Hormone inj26/11/201826/11/201810:30:00              11:30:00

Surgery27/11/201827/11/201807:30:00              08:30:00

Antibiotic01/12/201801/12/201808:00:00              09:00:00

Antibiotic01/12/201801/12/201814:00:00              15:00:00

Antibiotic01/12/201801/12/201820:00:00              21:00:00

Drain output01/12/201801/12/201812:00:00              13:00:00

Antibiotic02/12/201802/12/201808:00:00              09:00:00

Antibiotic02/12/201802/12/201814:00:00              15:00:00

Antibiotic02/12/201802/12/201820:00:00              21:00:00

Drain output02/12/201802/12/201812:00:00              13:00:00

Antibiotic03/12/201803/12/201808:00:00              09:00:00

Antibiotic03/12/201803/12/201814:00:00              15:00:00

Antibiotic03/12/201803/12/201820:00:00              21:00:00

Drain output03/12/201803/12/201812:00:00              13:00:00

Start evening primrose oil03/12/201803/12/201808:00:00              09:00:00

1wk post op04/12/201804/12/201808:00:00              09:00:00

Antibiotic04/12/201804/12/201808:00:00              09:00:00

Antibiotic04/12/201804/12/201814:00:00              15:00:00

Antibiotic04/12/201804/12/201820:00:00              21:00:00

Drain output04/12/201804/12/201812:00:00              13:00:00

Antibiotic05/12/201805/12/201808:00:00              09:00:00

Antibiotic05/12/201805/12/201814:00:00              15:00:00

Antibiotic05/12/201805/12/201820:00:00              21:00:00

Antibiotic06/12/201806/12/201808:00:00              09:00:00

Antibiotic06/12/201806/12/201814:00:00              15:00:00

Antibiotic06/12/201806/12/201820:00:00              21:00:00

Antibiotic07/12/201807/12/201808:00:00              09:00:00

Antibiotic07/12/201807/12/201814:00:00              15:00:00

Antibiotic07/12/201807/12/201820:00:00              21:00:00

Herceptin chase 07/12/201807/12/201810:30:00              11:30:00

Antibiotic08/12/201808/12/201808:00:00              09:00:00

Antibiotic08/12/201808/12/201814:00:00              15:00:00

Antibiotic08/12/201808/12/201820:00:00              21:00:00

Antibiotic09/12/201809/12/201808:00:00              09:00:00

Antibiotic09/12/201809/12/201814:00:00              15:00:00

Antibiotic09/12/201809/12/201820:00:00              21:00:00

Antibiotic10/12/201810/12/201808:00:00              09:00:00

Antibiotic10/12/201810/12/201814:00:00              15:00:00

Antibiotic10/12/201810/12/201820:00:00              21:00:00

Drain out Surgeon10/12/201810/12/201810:00:00              11:00:00

2wk post op11/12/201811/12/201808:00:00              09:00:00

Antibiotic11/12/201811/12/201808:00:00              09:00:00

Antibiotic11/12/201811/12/201814:00:00              15:00:00

Antibiotic11/12/201811/12/201820:00:00              21:00:00

Herceptin due RIGHT LEG 11/12/201811/12/201811:00:00              12:00:00

Stockings night only11/12/201811/12/201808:00:00              09:00:00

Antibiotic12/12/201812/12/201808:00:00              09:00:00

Antibiotic12/12/201812/12/201814:00:00              15:00:00

Antibiotic12/12/201812/12/201820:00:00              21:00:00

Phone doctors12/12/201812/12/201807:55:00              08:55:00

Antibiotic13/12/201813/12/201808:00:00              09:00:00

Antibiotic13/12/201813/12/201814:00:00              15:00:00

Antibiotic13/12/201813/12/201820:00:00              21:00:00

3wk post op18/12/201818/12/201808:00:00              09:00:00

Surgeon19/12/201819/12/201810:15:00              11:15:00

Dressings changed24/12/201824/12/201819:00:00              20:00:00

Hormone cream on24/12/201824/12/201809:30:00              10:30:00

Hormone inj left side24/12/201824/12/201811:10:00              12:10:00

Last night of stockings24/12/201824/12/201821:00:00              22:00:00

4wk post op25/12/201825/12/201808:00:00              09:00:00

Dressing change28/12/201828/12/201821:00:00              22:00:00

Start tamoxifen29/12/201829/12/201819:30:00              20:30:00

5wks post op01/01/201901/01/201908:00:00              09:00:00

Dressing changed01/01/201901/01/201919:00:00              20:00:00

Phone Dr02/01/201902/01/201910:30:00              11:30:00

Echocardiogram 04/01/201904/01/201909:00:00              10:00:00

Oncologist app & bloods04/01/201904/01/2019              10:00:00              11:00:00

Prescription 04/01/201904/01/201914:30:00              15:30:00

Macmillan chat 1hr07/01/201907/01/201914:00:00              15:00:00

Phone macmillan to cancel07/01/201907/01/201909:00:00              10:00:00

6wks post op08/01/201908/01/201908:00:00              09:00:00

Herceptin due LEFT LEG08/01/201908/01/2019              16:30:00              17:30:00

Breast Physio STAMFORD11/01/201911/01/201912:00:00              13:00:00

Collect prescription11/01/201911/01/201910:00:00              11:00:00

Zoladronic acid infusion11/01/201911/01/2019              16:00:00              17:00:00

Phone breast cancer care14/01/201914/01/2019              09:00:00              10:00:00

Phone physio unit re app letter 14/01/201914/01/2019              09:25:00              10:25:00

Phone radiotherapy unit14/01/201914/01/2019              15:00:00              16:00:00

S' calling from Someone like me14/01/201914/01/2019              11:00:00              12:00:00

Dressing change15/01/201915/01/201915:00:00              16:00:00

Order meds17/01/201917/01/201912:30:00              13:30:00

Radiotherapy mapping17/01/201917/01/201911:00:00              12:00:00

Hormone cream on21/01/201921/01/201909:30:00              10:30:00

Hormone inj right side21/01/201921/01/201911:00:00              12:00:00

8wks post surgery22/01/201922/01/201908:00:00              09:00:00

Blood test TB at house22/01/201922/01/201909:30:00              10:30:00

Physio25/01/201925/01/201912:00:00              13:00:00

4 months pessary26/01/201926/01/201908:00:00              09:00:00

Surgeon28/01/201928/01/201914:15:00              15:15:00

Book dentist app29/01/201929/01/201910:00:00              11:00:00

Herceptin 9 ? RIGHT31/01/201931/01/201914:00:00              14:30:00

Bra lady fitting 01/02/201901/02/201909:00:00              10:00:00

Check tamoxifen on repeat 04/02/201904/02/201911:00:00              12:00:00

10wks post surgery05/02/201905/02/201908:00:00              09:00:00

2wks TB test05/02/201905/02/201912:00:00              13:00:00

Physio06/02/201906/02/201914:30:00              15:30:00

Phone doc change hormone jab11/02/201911/02/2019              08:00:00              09:00:00

Phone macmilan11/02/201911/02/201911:00:00              12:00:00

Phone dentist for emergency app13/02/201913/02/2019              08:00:00              09:00:00

Surgeon15/02/201915/02/201911:30:00              12:30:00

Rheumatologist 18/02/201918/02/201910:30:00              11:30:00

Hormone cream on18/02/201918/02/201912:00:00              13:00:00

Surgeon18/02/201918/02/201908:45:00              09:45:00

12wks post surgery19/02/201919/02/201908:00:00              09:00:00

Radiotherapy 120/02/201920/02/201910:30:00              11:30:00

Surgeon20/02/201920/02/201908:45:00              09:45:00

Herceptin 10 LEFT21/02/201921/02/201909:30:00              10:30:00

Radiotherapy 221/02/201921/02/201914:30:00              15:30:00

Radiotherapy 322/02/201922/02/201912:05:00              13:05:00

Dentist25/02/201925/02/201915:30:00              16:30:00

Query hospital app25/02/201925/02/201909:00:00              10:00:00

Radiotherapy 425/02/201925/02/201912:05:00              13:05:00

Radiotherapy 526/02/201926/02/201912:15:00              13:15:00

Collect prescription27/02/201927/02/201909:30:00              10:30:00

Radiotherapy 627/02/201927/02/201911:20:00              12:20:00

Radiotherapy Review27/02/201927/02/201911:40:00              12:40:00

Dressing change28/02/201928/02/201913:30:00              14:30:00

PHYSIO Kate Peterborough 28/02/201928/02/201911:30:00              12:30:00

Radiotherapy 728/02/201928/02/201912:00:00              13:00:00

Key Worker re dentist01/03/201901/03/201912:00:00              13:00:00

Radiotherapy 801/03/201901/03/201912:25:00              13:25:00

Phone dentist04/03/201904/03/201909:00:00              10:00:00

Radiotherapy 904/03/201904/03/201912:25:00              13:25:00

14wks05/03/201905/03/201908:00:00              09:00:00

Radiotherapy 1005/03/201905/03/201912:00:00              13:00:00

Counselling app06/03/201906/03/201909:00:00              10:00:00

Radiotherapy 1106/03/201906/03/201912:25:00              13:25:00

Radiotherapy Review06/03/201906/03/201912:00:00              13:00:00

Dentist 07/03/201907/03/201909:00:00              10:00:00

Dressing change07/03/201907/03/201913:30:00              14:30:00

Radiotherapy 1207/03/201907/03/201911:55:00              12:55:00

Radiotherapy 1308/03/201908/03/201912:10:00              13:10:00

Fit to work form to HR11/03/201911/03/201915:00:00              16:00:00

Dr appt11/03/201911/03/201908:30:00              09:30:00

Dressing change11/03/201911/03/201912:00:00              13:00:00

Radiotherapy 1411/03/201911/03/201911:40:00              12:40:00

STARTED AMITRIPTYLINE 10MG11/03/201911/03/2019              08:00:00              09:00:00

15wks12/03/201912/03/201908:00:00              09:00:00

LAST RADIOTHERAPY 15!! DOM12/03/201912/03/2019              11:45:00              12:45:00

Herceptin 11 right leg14/03/201914/03/201912:30:00              13:30:00

Dressing change14/03/201914/03/201911:00:00              12:00:00

AMITRIPTYLINE 20mg18/03/201918/03/201918:30:00              19:30:00

Hormone cream on18/03/201918/03/201914:30:00              15:30:00

Hormone inj right side18/03/201918/03/201916:00:00              17:00:00

16wks post surgery (4 mths)19/03/201919/03/201908:00:00              09:00:00

Dressing change19/03/201919/03/201914:00:00              15:00:00

17 wks26/03/201926/03/201908:00:00              09:00:00

Breast Physio class26/03/201926/03/201910:30:00              11:30:00

Radiotherapy skin check26/03/201926/03/2019              12:40:00              13:40:00

HOPE COURSE MACMILLAN28/03/201928/03/201913:30:00              16:00:00

18wks02/04/201902/04/201908:00:00              09:00:00

HOPE COURSE MACMILLAN04/04/201904/04/201913:30:00              16:00:00

Breast cancer support meeting04/04/201904/04/2019              19:00:00              21:00:00

Herceptin 12 left05/04/201905/04/201908:00:00              09:00:00

Oncologist app05/04/201905/04/201909:45:00              10:45:00

Hormone cream on08/04/201908/04/201908:00:00              09:00:00

Hormone inj left side ?08/04/201908/04/201908:00:00              09:00:00

19wks09/04/201909/04/201908:00:00              09:00:00

HOPE COURSE MACMILLAN11/04/201911/04/201913:30:00              16:00:00

Physio11/04/201911/04/201911:00:00              12:00:00

Echocardiogram 15/04/201915/04/201912:00:00              13:00:00

20wks post surgery (5 mths)16/04/201916/04/201908:00:00              09:00:00

Zoladex left side16/04/201916/04/201915:20:00              16:20:00

HOPE COURSE MACMILLAN18/04/201918/04/201913:30:00              16:00:00

6 wks post radio23/04/201923/04/201908:00:00              09:00:00

Herceptin 13?25/04/201925/04/201908:00:00              09:00:00

HOPE COURSE MACMILLAN25/04/201925/04/201913:30:00              16:00:00

HOPE COURSE MACMILLAN02/05/201902/05/201913:30:00              16:00:00

Breast cancer support meeting02/05/201902/05/2019              19:00:00              21:00:00

1year diagnosis03/05/201903/05/201908:00:00              09:00:00

8wks post radio07/05/201907/05/201908:00:00              09:00:00

Dentist 13/05/201913/05/201911:00:00              12:00:00

6mths post surgery14/05/201914/05/201908:00:00              09:00:00

Herceptin 14 ?16/05/201916/05/201908:00:00              09:00:00

This is probably a little overwhelming. But these weren't all input at once - they built up over a year. By laying them bare, I'm hoping you see how important it is that you get organised as quickly as possible otherwise you're going to sink in a mire of dates and times that you'll struggle very hard to keep track of. Having them organised and synchronised between you will take some of the pressure off.

So that's getting organised out of the way! What else? First things first, you're going to want to digest what you've been told and look at the information you've been given. It's important you and your partner read it and understand it.

If your partner is willing, have her write a letter giving you permission to discuss her medical situation - pass a copy to your consultant, your oncologist and your GP. This will make things far easier if you need to advocate on your partner's behalf. It's highly likely you will have to. For example, if you need to talk about your partner's prescriptions, her condition or anything else that arises during the course of the treatment.

Also consider setting up a power of attorney covering your partner's health and welfare. You also need to discuss your partner's wants and needs for end of life care. There doesn't necessarily need to be anything formal at this point, but definitely talk about it, no matter how difficult. You're not planning for her to die - that is, it's not the end goal here - but you need to plan in case she does.

This is also a good time to consider doing your wills if you haven't already.

You'll need to prepare yourselves to speak to the various people in your lives - your family, friends and colleagues.

The next section in this book is called 'Telling People', and covers discussing issues with all of the people in your lives.

If you have holiday(s) booked, ask your consultant if you will be able to take them or whether you should cancel. We had three booked, all of which we had to cancel.

Fortunately we had travel insurance for the one that wouldn't refund us (the British one, for what it's worth) while the two foreign holidays had no issues refunding us. Go figure.

The reasons you may have to cancel are myriad but, to give you some idea, Jen's treatment meant she would be immune compromised, as well as completely wiped out for weeks at a time, so it was considered too great a risk, particularly where foreign health care was concerned as there was no guarantee that non-UK hospitals would be able to provide the immediate care she might have needed, not to mention the language barrier and, of course, exposure to foreign bacteria via large groups of people.

Ask your healthcare professional if your partner should stop or start anything. This may include existing medication (for example, Methotrexate for Rheumatoid Arthritis), food, or particular activities, say, skydiving, scuba diving, gardening, swimming, gymnastics, walking...you get the picture. It's safe to assume you and your partner are going to be tired a lot of the time.

Finally, take a look at the 'Lists' chapter of the book to see if there's any other kit or provisions you can pick up that will save you time later. And while we're on the subject of time saving, consider having your weekly groceries delivered - most supermarkets have an online system now - and also consider cooking up big batches of food and freezing it in single portions to eat later.

Telling People

At a glance

Read the available literature on talking to children about cancer.

Have a plan on what you want and need to say.

Make a physical or mental note of the facts and stick to them. Don't speculate or rely on statistics.

Prepare people gently - have family and friends sit down and tell them you have bad news.

Don't expect any particular reaction - everyone's different.

Lack of reaction isn't a sign of not caring - some people need longer than others.

Give people time to process the information.

Ask if there's anything else they need to know - note any questions you can't answer and find out from your multi-disciplinary team.

Involve your children's school in the wider conversation.

Jen and I came home in utter shock on the day of the diagnosis. It's totally bizarre on reflection, but I went to the hardware store nearby to pick up some strimmer nylon and saw our eldest son's partner who worked there. When she asked me how I was, I made a split decision to tell her. Jen and I had already discussed that it wasn't going to be a secret and she was happy to be open about it. Anyway, the poor lass at the hardware store got the first iteration of a story that would become well practised. She was wonderful - started crying and asked if it was OK to give me a hug. Once we'd hugged, she asked me how I was! Well, I nearly broke down there and then! Bless her. She's a wonderful girl and we're so happy our lad met her. But I digress.

Aside from dealing with the initial diagnosis, telling our children was arguably the next most difficult thing we had to do. It was definitely one of the most difficult decisions we'd had to make in our lives up to that point. We decided to be upfront and honest about what was happening. Our eldest was at university, our youngest was in full time employment and living at home. We naturally had concerns about disrupting their lives with the news and, like any parent, instinctively wanted to shield them from the truth for fear of hurting them.

On balance we felt honesty was more important - we certainly wouldn't be able to hide the truth from them and we wanted to ensure there was trust from the outset. We considered it to be more damaging for them to feel excluded or outside the problem which may prevent them from talking about how they were feeling - either for fear of hurting us or through a lack of trust.

We also made a point of telling our kids at the same time. I don't honestly know why, but it seemed the right thing to do. Ideally we would have wanted to tell them face to face but the eldest was away at uni so we opted to tell our youngest in person while our eldest was on video chat. We explained that Mum had been diagnosed with a breast tumour and that it was potentially life threatening. That it was treatable and that further tests were necessary in order to establish whether the cancer had spread. We kept the language simple and clear and remained calm throughout. We explained that we didn't know how things would turn out, that it was going to be difficult for a while and that we didn't have all the answers. We made it clear that they could ask any questions and we would answer them. If we didn't or couldn't know the answers we would find out.

I say 'we' a lot in the last paragraph, but it was mostly 'me' telling the kids as Jen was simply too emotional a lot of the time to speak.

Letting people know about the diagnosis is entirely your partner's decision. That is, she decides if and when and who it's shared with.

If you have children, if, how and when you tell them is entirely down to you and your partner and will largely depend on how old they are. I would recommend open honesty - life is real after all - but be sure to be calm when you tell them.

There are various guides on how to approach the subject with younger children and there is a link at the end of this chapter which provides more information on talking to children and teenagers.

If you've decided to tell people from the off and especially if you're telling people on the first day of diagnosis, it's likely you're going to do most of the talking because, unless your partner is made of stone, she's going to be emotional.

Of course, it may be that you're very emotional too, so it may be necessary to tell a trusted friend or family member and ask them to let everyone know. If you and your partner need space to console each other, make sure this is conveyed to everyone so you're not inundated with calls.

Try to work out approximately what you're going to say and how much you're going to tell people.

Try to avoid wild speculation - both to the positive or the negative - and stick to the facts. Most people know bullshit when they hear it.

You're going to have to tell quite a few people, so pace yourself and keep it brief if you need to. Make a list of the people that need to know and separate them into those who need to know immediately and those who don't.

It may be easier to tell multiple people in an email - at least, those who don't need to be told face to face or verbally. Perhaps best saved for those who aren't close.

Naturally, there will be people on the periphery of this that will want regular updates as the journey progresses - be they family, friends or colleagues. Consider setting up an e-group either via email, instant messenger (WhatsApp, FaceBook or whatever the 'app du jour' is when you're reading this) so you can update multiple people in one fell swoop each time something of note happens. Even if you can get a handful of people into a group you'll save yourself valuable time, not to mention sanity at having to repeat yourself. It'll also help you keep track of who's updated and who's not. Trust me, you'll start to lose track of what's said to who and when.

Oh yeah, you're going to hear "If there's anything I can do...." and 'Be/stay strong..." a lot. I mean, a fucking lot. Try not to be dismissive - the people saying it haven't heard it said to you the last 100 times, plus you never know when you're likely to actually call on that help. Of course, some people offer to help when they don't plan to help at all, some offer to help when there's nothing they can possibly do to help and some come through for you when you least expect it. We've found this journey to be very telling as to the character of the people we know and love. You might too.

The following is a list of the types of people you're going to need to inform. Obviously you need to flesh the list out with names, but hopefully it will help in the planning. Tick the names off when you've told them. Oh, and don't forget the following list should cover your partner's and yours:

Children
Parents
Siblings
Grandparents
Extended Family
Friends
Colleagues
Strangers
Insurance company(ies)

I've included strangers in the above list because your partner's illness is going to be a major part of your lives, albeit temporarily. You'll probably become quite blasé about telling people after a while - I certainly did - so it's worth having a think about how much you want people to know. There are aspects of treatment that can make it quite obvious what's happening, for example, loss of hair or external drains post-surgery. I found it easiest to just tell people once I was sure Jen was happy for them to know. It's not something that needs to be kept secret. You may be surprised who else is experiencing something similar.

Useful resources
https://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children
or
go to macmillan.org.uk and search for 'talking to children'.

or
go to a search engine and search for 'talking to children about cancer'.

Appointments

At a glance

You're going to have a lot of appointments - keep relevant people (family, friends and colleagues) up to date.

Have a shared calendar (we used Google Calendar) and use it - even if they give you written appointment cards.

Keep a list of running questions to ask at appointments (we used Google Keep).

Anything you're not sure about: ASK.

As I mentioned earlier, straight after getting the news, while we were still numb, I swore to myself and to Jen that I would be with her every step of the way. While I didn't attend every single appointment, I did attend almost all of them. A conservative guess would be around 90 percent of them. Even the small ones. I wasn't able to attend every radiotherapy treatment (I went to three of the total 15) and I wasn't able to attend the Macmillan 'Look Good, Feel Good' session because men weren't allowed. My family stepped in to do the radiotherapy runs and my Mum went to the Macmillan session.

Your circumstances may be that you can't (or don't want to) do that. And that's fine. Everyone's different and everyone's circumstances are different.

Suffice to say, your partner is going to have a lot of appointments. I'm not just talking about the treatments, but also things like consults, pre-treatment checks, scans, counselling, support, dressing changes, follow ups and so forth.

Whether you're with your partner for all of them or not, you can and should still play a major part in helping prepare for them both physically (supplies, kit and so forth), mentally (lists, reminders, moral support) and emotionally, giving them time and space to rant or just talk about what they've been through, what they're going through, or just giving them a shoulder to cry on and a gentle hug.

This is where software comes into its own. Particularly a calendar app. You'll need to be rigid and regimented when it comes to keeping it up to date with appointments but it will help immensely if you do.

Expect lots of people at different stages of the cancer journey, expect shitty hospital parking and expect delays both for consultations as well as treatment. You need to keep in mind that people in front of you have battles similar to your own to fight, have a plethora of unfamiliar issues that need addressing and thus cannot be time boxed in the same way as, say, a regular doctor's appointment.

Due to the regularity and number of hospital appointments, costs for parking are usually subsidised or free. Parking was free for us, but I don't know if that's the case for all hospital trusts so it's worth asking. It could literally save you hundreds of pounds. Check before treatment starts as I think it's highly unlikely they'll allow for back-dated claims.

Appointment types you are likely to be attending:

Consultation
Oncology
Breast care
Surgical
GP visit
New patient orientation
Surgical
Mastectomy
Lumpectomy
Reconstruction
Follow up reconstruction
Dressing change
Drain removal
Treatment

Chemotherapy (including Clinical Trial therapy)

Hormone Therapy
Targeted Therapy
Radiotherapy
Physiotherapy
Occupational Therapy
Counselling
Emergency hospital admission
Tests
Blood test
Mammogram
Ultrasound
Biopsy
CT Scan
Bone Scan
Heart Valve Scan
X-ray

Tests

At a glance

When your partner has these tests and which she has depends on her cancer and the treatments she is having.

Different tests will be performed before, during and after treatments.

The tests aim to do things like find any spread of disease, track treatment progress and ensure the treatment isn't doing more harm than good.

If you're not sure what a test is for, ask.

Ask when the results will be known and note it in your shared calendar.

Chase for results if they aren't provided when expected.

Right from the start, Jen had a lot of tests to be carried out. Aside from the initial biopsy, she also had to have a blood test, an MRI scan (looking for spread to other organs) and a bone scan, looking for spread to the bones. Apparently breast cancer is particularly good at spreading to bones. I have no idea why. Part of your partner's treatment may well involve medicine that protects the bones.

If your partner is having chemotherapy, she will need blood tests before each chemo 'cycle' in order to establish that she's able to tolerate it, as well as to see if anything is amiss as a result of the previous cycle. If something is amiss, the chemo dose may be modified or administered differently.

Some chemo drugs can cause heart damage - particularly the heart valves. If your partner is having one of these drugs, she will need a heart scan. It's basically the same technology used to scan in-utero babies, so painless, but utterly fascinating.

Other tests you can perform include taking your partner's temperature regularly during chemo (we'll touch on that further in the chemotherapy chapter), as well as keeping an eye on her overall appearance. You're looking for swelling, rash or skin discolouration, changes to eye colour (yellowing of the whites indicates jaundice - the liver takes a pounding during chemo) and so forth. You'll also be monitoring her overall demeanour - listlessness, lethargy and fatigue are all facets of chemotherapy, so some stuff you just have to take in your stride, but making sure she's conscious, alert and responsive is no bad thing. You can't do it 24/7, but do it when you can.

The chances are you and your partner will be familiar with some or all of these tests. Some are uncomfortable, while others are just time consuming. Needless to say, they are essential in the proper diagnosis and treatment of your partner's cancer.

The following is a non-exhaustive list of tests, with a brief description of what each is for and what to expect:

Mammogram

An x-ray of the breast, taken when the breast is compressed between two plates. Uncomfortable for some women. May be additionally uncomfortable when a tumour or cyst is involved.

Ultrasound

A painless procedure which uses ultrasound to view tissue. The same technology used to view unborn babies.

Biopsy

Several types of breast biopsies exist. Either a fine or wide bore needle is used, or tissue is taken surgically. Can be painful and distressing for your partner. Try to be with her when she has one.

CT Scan

A generally painless test that combines multiple x-ray scans to create a cross-section view of a targeted area. It can be quite daunting to the uninitiated but for those who have had them before it's a nice lie down.

MRI

A generally painless test that uses magnetic resonance to produce highly detailed imagery of a targeted area or areas. As with the CT scan it can be quite daunting first time around. Sometimes dye is used to track fluid movement in the body.

Bone Scan

Used to detect bone abnormalities - in this context to find spread of breast cancer to the bones. A tiny quantity of nuclear medicine is injected into your partner who is then scanned by a machine called a gamma camera.

Heart Valve Scan

A painless ultrasound that looks at the opening and closing of the heart's valves. Performed before, during and after treatment.

Blood test

Most should be familiar with these. Generally, only minimally painful, a small sample of blood is taken from an easily accessible vein. Used to detect issues that treatment may be causing, such as organ damage.

X-ray

Again, it's hard to imagine you've got this far through life without knowing about x-rays. They can sometimes be used are used to detect tumours, for instance in the bones or chest.

Treatments

At a glance

Ask what treatments are needed/recommended.

Ask what side effects are expected.

Ask if there are there any side effects that you should be particularly aware of - such as life threatening.

Ask what should to do if you experience side effects.

Ask what you can do to improve outcome.

Ask how you can aid recovery/healing.

This chapter is a very brief overview of the types of treatments your partner may receive. There are chapters on each specific treatment, covering what to expect, side effects and so on, in much greater detail.

The treatment is decided based on a number of factors.

Depending on what stage your partner's cancer is at, and whether it's surgically treatable, your care team will either be taking a 'curative' or 'palliative' path. The former will be looking to put your partner into remission and, while they will always hesitate to use the term 'cure', that's essentially what they are aiming for. If your partner's cancer has metastasised (spread) and there are secondary breast tumours, they will be looking to push the cancer back and do everything they can to ensure quality of life for your partner. It's worth noting that secondary breast cancer in, say, the lung, is still called breast cancer. Odd, I know, but the cells are essentially from the breast.

You want to be looking at a curative path, for obvious reasons.

Also, depending on the grade of the cancer and the stage, your partner may need therapy to reduce the size of the tumour, stop the spread and kill off anything that might have spread, before surgically removing it. Said treatment may continue after the main surgical treatment.

Consent

As part of the treatment plan, your partner will be given consent forms to read and sign. These will detail the different treatments and the possible side effects. They make for scary reading, quite frankly. It's well worth you reading them too so you have a full understanding of what's going on. Ultimately, it's your partner's choice to proceed with any treatment, but that doesn't mean you can't have any input in the decision.

Side effects

Pretty much every cancer treatment comes with possible side effects. That doesn't necessarily mean your partner is going to experience them all...or even any of them. Like so many aspects of cancer, 'it depends'. On how resilient your partner is. How aggressive the treatment is. What type of treatment she's having and so on. Just make sure you're familiar with them all so you can help your partner if they become apparent during the treatment. The different treatment chapters in this book detail the more common side effects but you need to be aware of all of the ones specific to your partner.

The following is a list of treatments that your partner may or may not need:

Chemotherapy

Drugs used to destroy cancer cells. This could be multiple 'cycles' of a single drug or combination of drugs, or multiple cycles of a drug or combination of drugs, followed by multiple cycles of another drug or combination of drugs. No two people's chemotherapy regimes are the same, which is why it's so difficult to provide guidance on specific chemotherapy treatments.

Surgery

Can be anything from a small lumpectomy where the tumour is removed from the breast, sparing as much healthy tissue as possible, through to removal of one (mastectomy) or both (bilateral mastectomy) breasts along with the lymph nodes to either side.

Radiotherapy

Controlled bursts (doses) of radiation fired at a targeted site to destroy cancer cells.

Targeted treatment (aka biological therapy)

Drugs used to prevent the growth and spread of cancerous cells. Dictated by how receptive the cancer cells are to certain biological functions.

Hormone therapy

Any number of drugs that affect hormone production or activity in the body. Again dictated by how receptive the cancer cells are to certain biological functions.

Clinical trials

Depending on any number of possible characteristics your partner's cancer may have, it's possible your partner might be eligible for trial therapy. This is entirely at the discretion of the treatment team, as well as your partner.

Ongoing treatment

Your partner may need ongoing treatment in the form of continued hormone therapy, bone protection, targeted therapy or any number of other treatments, including occupational therapy or physiotherapy. Jen's ongoing treatment is for bone protection, hormone therapy and physiotherapy. The hormone therapy is for 10 years.

Other medicines

Your partner may be prescribed a potentially vast array of medicines before, during and after her treatment - some will be taken at specific stages, some may be taken during and after the other 'main' therapies. Some will be to complement the main therapies, some will be to counteract the side effects. It's beyond the scope of this book to list or otherwise name the medicines, but it's useful to have a good idea of the general types: antihistamines, anti-emetics, steroids, pain relief, anti depressants, immunity boosters, relief creams and liquids...you get the picture. Make a note of the dose and administration scheduling as well as any side effects to look out for.

I feel it's worth noting at this point that there are no guarantees that any of the treatments your partner receives will work. Certainly you'll be very unlikely to get a 100 per cent cast iron promise that the treatment will be completely effective. Doctors are very reluctant to provide percentages or likely outcomes and, based on the research I've done, I'm not convinced those sorts of numbers do anyone any good anyway. For example, if you find out that 70 per cent of people with a specific cancer type, treated with a specific regimen, survive beyond five years, what can you realistically make of that information? Of 100 people in any given survey, six are statistically likely to die by accident within a five-year period. See what I mean? So, all things being equal, your best course of action is to proceed in a way that is likely to produce the best outcome, no matter what.

Lists

This chapter provides the lists of things you are going to need for the various appointments and visits you and your partner are going to have during the different treatments as well as things that will be useful to have at home. I've not included medication in any of the lists so bear in mind they will need to be included for any hospital stays. We found it best to keep Jen's meds in a sealed plastic food container. This made them portable while keeping them protected from the elements.

Each list is completely stand alone, so there is duplication between lists. This means you only need to look at the appointment you're attending for a list of the things you're likely to need. Bear in mind that some of the items will relate to both of you - like food and entertainment. It's no good your partner having some cool sounds and a first person shooter if you're sitting there bored out of your mind.  Also consider that you are likely to need entertainment more than your partner - at least, for the parts where scans and such are involved, though I recommend you watch any heart valve scans as they are truly fascinating.

Jen and I also kept a 'bug out' bag on standby for emergency hospital visits. We used it three times in total, each time during chemotherapy when Jen spiked a temperature. For the most part it lived in the boot of the car when we were at home and travelled with us everywhere. It was invaluable because it allowed us to focus on getting Jen to hospital rather than running around trying to figure out what we needed to take.

The core goal of these lists is to achieve the following for both you and your partner:

Comfort
Sustenance
Refreshment
Entertainment
Information/Communication

I aimed to make this chapter as simple as possible as I think it speaks for itself but I've added notes where I think clarity is needed. Some of this stuff you'll already have, some you'll need to go out and buy. Obviously you can tweak the lists as you see fit and based on your own personal wants and needs but it should take most of the heavy lifting out of the thought process for you. I genuinely hope it helps.

Oh, and don't forget on the day: Keys, Purse, Wallet, Phone, Medication, Treatment Folder :)

Stationery
Notepads
Pens

Folder with 40-50 polythene sleeves (treatment folder)

2-3 plastic document wallets

We took Jen's treatment folder - basically every piece of paper we were given as we went along - to every appointment. That way, if someone asked a question about Jen's treatment that we didn't know the answer to (some of the drug names are complex and confusing) we'd have the answer to hand. Towards the end of treatment we didn't need to refer to it at all because we pretty much knew the whole thing by heart. It became a thing of comfort, strangely. Anyway, it's worth keeping everything together.

Logistics

Cool bag (for day-long chemo sessions and day visits to hospital)

Reusable drink bottles - insulated ideally. We used vacuum insulated bottles that keep drinks cold for 24 hours.

Flask(s) or insulated mug(s)

Comfortable shoulder bag/rucksack - something you can carry while keeping your arms free

Medical equipment
Alcohol hand gel
Latex or Nitrile surgical gloves
Surgical wipes

The alcohol gel proved useful when I was giving Jen her injections but also when we were out and about during Jen's chemotherapy as she needed to be protected from infection. The gloves and surgical wipes were used for dressing changes.

Software
Calendar app
Notes app
Camera app
Journal app
Reminder app
Communication app (email & messenger)

Jen and I have android devices in the main, so I setup a new Gmail account, which we both had access to, and added them to our phones and tablets. This allowed us to share Google Calendar, Google Keep (reminder/list app) as well as the Journal app 'Journey'. I can't advise if something similar can be done with Apple or Windows devices, but I'd be very surprised if it can't. The most important app for us was Calendar so if all else fails, you will definitely be able to share that, even if it's via web browser. Google's Calendar and Keep apps are both available as plugins for the Chrome and Firefox browsers.

Hardware (Info/Entertainment/Comms)
Phone
Tablet
Laptop
PC
Digital camera

Obviously you don't need to go out and buy a tablet, laptop or PC if you don't have one. I mention them as they are very useful tools for staying organised, doing research and capturing information and therefore should definitely be used if you have them. I do recommend that you each have a decent smartphone though as they can provide information, entertainment and communications in the one package, not to mention a digital camera. The camera is as much for capturing the healing process as well as the good times you have together - I promise you will still have them.

Comfort
Lip balm
Fragrance free moisturiser
Fragrance free shampoo
Fragrance free conditioner
Fragrance free body wash
Boiled sweets/Lollipops
Mints
Iced Lollies (non-dairy)
Lucozade (or similar energy drinks)
Chilled water
Iglu mouth ulcer gel
Oragel

Over the counter sleep aid (discuss with oncologist)

Ear plugs
Eye mask
Sanitary towels
Baby wipes

IMPORTANT: Medications, skin creams, sprays, drinks (anything going in or on your partner's body, basically) should be discussed with your oncologist, surgeon and radiologist (as appropriate) to ensure they won't interact adversely with any of your partner's treatments. Also, try to get cleansing products free from sulphates and parabens, as well as aluminium and titanium compounds.

Length of stay and appointment types
Short stay:
Oncologist/Consultant/Surgeon
Blood test
Radiotherapy

Clinics - post-surgery check ups/dressing changes

Physiotherapy
Occupational Therapy
Mammogram
Ultrasound
Biopsy
CT Scan
Bone Scan
Heart Valve Scan
X-ray
Medium stay:
Chemotherapy
Long stay:
Surgery
Emergency hospital visits
Short stay

Don't forget on the day: Keys, Purse, Wallet, Phone, Medication, Treatment Folder

Information
Pen
Notepad
Sustenance
Boiled sweets/Lollipops/Chews
Sandwiches
Cereal bars
Healthy crisps
Fresh fruit
Refreshment
Bottled water/energy drinks
Entertainment
Book
Magazine
Puzzle book
Tablet & charger with long USB cable
Earphones for Music/Media
Music
Media
Phone charger
Comfort
Lip balm
Small personal fan

Small alcohol gel

Fragrance free moisturiser

Medium stay

Don't forget on the day: Keys, Purse, Wallet, Phone, Medication, Treatment Folder

Information
Pen
Notepad
Sustenance
Boiled sweets/Lollipops/Chews
Sandwiches
Cereal bars
Healthy crisps
Fresh fruit
Refreshment
Bottled water/energy drinks
Entertainment
Book
Magazine
Puzzle book
Tablet & charger with long USB cable
Earphones for Music/Media
Music
Media
Comfort
Phone charger
Small personal fan
Small alcohol gel
Lip balm
Fragrance free moisturiser
Planned hospital visit (Long stay)

Don't forget on the day: Keys, Purse, Wallet, Phone, Medication, Treatment Folder

Comfort
Pyjamas
Light dressing gown
Bed socks
Small soft blanket (microfibre)
Earplugs
Eye cover sleep mask
Soft beanie hat
Slippers
Small personal fan
Tissues
Toothbrush
Toothpaste
Deodorant
Sanitary towels
Moisturiser
Face cleanser
Face cloth
Small alcohol gel
Baby wipes
Lip balm
Fragrance free moisturiser
Iglu mouth ulcer gel
Oragel

Over the counter sleep aid (discuss with doctor/oncologist)

2-3 small plastic bags for wet/dirty items

Clean clothes (comfy, loose fitting) for discharge

Trousers
T-shirt
Knickers x 2
Bra *
Socks x 2
Light shoes/plimsolls
Cardigan/Hoodie
Information
Pen
Notepad
Sustenance
Boiled sweets/Lollipops/Chews
Crackers
Cereal bars
Healthy crisps
Dried fruit
Refreshment
Bottled water/energy drinks
Entertainment
Book
Magazine
Puzzle book
Tablet & charger with long USB cable
Earphones for Music/Media
Music
Media
Phone charger

* Speak to your consultant/surgeon if any special clothing is needed for discharge. For example, consider if you have the appropriate bra - eg, unwired front loader - and that it will fit as required (your partner's breast(s) may not be the same size, post surgery). Also think about whether your partner will need a front opening top as she may not be able to raise her arms above her head.

It's also worth trying to get a rough estimate on how long your partner is going to be staying in hospital so you can pack the right amount of underwear.

Emergency Hospital Visit (Bug Out Bag - Long stay)

- Note this is all stuff for your partner

Don't forget on the day: Keys, Purse, Wallet, Phone, Medication, Treatment Folder

Comfort
Pyjamas
Light dressing gown
Bed socks
Small soft blanket (microfibre)
Earplugs
Eye cover sleep mask
Soft beanie hat
Slippers
Small personal fan
Tissues
Toothbrush
Toothpaste
Deodorant
Sanitary towels
Moisturiser
Face cleanser
Face cloth
Small alcohol gel
Baby wipes
2-3 small plastic bags for wet/dirty items

Clean clothes (comfy, loose fitting) for discharge

Trousers
T-shirt
Knickers x 2
Bra
Socks x 2
Light shoes/plimsolls
Cardigan/Hoodie
Sustenance
Boiled sweets/Lollipops/Chews
Crackers
Cereal bars
Healthy crisps
Dried fruit
Refreshment
Bottled water/energy drinks
Entertainment
Book (for reading)
Magazine(s)
Puzzle book
Tablet & charger with long USB cable
Earphones for Music/Media
Music
Media
Phone charger
Information
Pen
Notepad

Surgery

At a glance

Ask how long the surgery will take.

Ask what risks there are.

Ask how much of the breast is going to be removed.

Consider and ask if it is pertinent to remove both breasts.

Find out how long the hospital stay is likely to be.

Establish where the surgery will take place.

Ask who will perform the surgery.

Find out the surgeon's success rate and how successful it's anticipated to be based on your partner's cancer profile.

Ask about reconstruction, noting that it's neither compulsory nor strictly necessary.

Will reconstruction be done immediately after surgery or later?

What type of implant will be used?

How long will recovery take?

What restrictions will there be? For example, driving.

General dos and don'ts before, during and after surgery?

What bra is needed post-surgery and is it required for hospital discharge?

Ask if your partner should stop or start anything, such as medicines or food.

Jen's cancer initially presented in her left breast. It was a 49 mm tumour which had metastasised to the lymphatic system under the arm - before the surgery it was unclear how many lymph nodes were affected, just that 'at least one' was. The first plan was to completely remove the left breast (called a mastectomy) and reconstruct it (should Jen want reconstruction), as well as 'sweep' (ie, remove) as many lymph nodes as required (read: all of them under the arm that the surgeon could find) by tunnelling down through the mastectomy incision, which would help limit the number of scars.

Because Jen's cancer was picked up due to her cysts and the cysts reoccurred on a regular basis, an argument was made (by Jen and me) to remove the right breast electively (by choice) as leaving it would directly impinge on Jen's quality of life. That is, regular false positives, constant worry of whether the cancer had formed in the remaining breast and, of course, the worry that any tumours that might form could be missed by inattentive people no doubt annoyed by Jen constantly appearing at the breast clinic to check every lump that appeared.

We were advised by the oncologist that the surgeons at Peterborough may be reluctant to remove healthy breast tissue. This got our backs up somewhat but we presented our case logically and calmly. The oncologist agreed to support our position as there was a clear argument for improved quality of life and Jen was referred to a psychologist for mental health checks to ensure she was able to make the decision and that the decision was rational. Fortunately, reason, logic and scientific rigour prevailed and it was agreed that Jen should have the bilateral (double) mastectomy. She also wanted them to be reconstructed and this was factored in along with the lymph node sweep.

The surgery was to take an estimated 7 hours.

To keep myself grounded, I reminded myself (and Jen) that while there is an element of risk - particularly where a general anaesthetic is in play - these types of surgery are pretty much routine nowadays. Consider the number of women who have elective cosmetic surgery to 'enhance' their breasts (in either size direction). The surgery is well tested and pretty much commonplace today.

That's not to say Jen and I weren't afraid - what rational human being wouldn't be in that situation? But I didn't voice my fear on the lead up to the op because I didn't want Jen to be any more frightened than she already was. I opted for a calm, reasoned demeanour - though I'm sure she saw through it. She does the same when we're flying abroad - that shit terrifies me.

To know what to pack for the hospital stay, see the 'Lists' section of this book. Hopefully it'll save you some mental worry knowing you've got everything you need, leaving you head space to be in the moment with each other. That's the plan, anyway.

I spent a fair amount of the day doing stuff to keep my mind occupied. This consisted of console gaming, sleep, online window shopping and eating. It was a massive relief to see Jen on the other side of the operation, but she was laid low. She came out of surgery and woke to...considerable pain, which was eventually controlled with fentanyl.

Besides the actual chest wounds, she also had three drains in - one for each breast and one for the lymph node sweep site, plus two vacuum dressings on each breast, each of which had a pump with a vacuum tube. In total, there were five tubes hanging off Jen which, besides three being stitched into her, proved to be a real hindrance. Your instinct will probably be to help your partner with the drains so she can go to the toilet. Let your partner guide you as to how much help she wants or needs. After all, when you're not there, she's still going to need the toilet so ideally she needs to be able to operate independently of you. I know it's difficult, but you're helping her more by not helping.

I took regular photographs of Jen's scars and breasts in general so we could keep track of changes over time and I'm glad I did. We were able to track the healing process of a particularly troublesome wound that took about 6 months to heal. It was also useful to see the change in skin tones during and after radiotherapy. But more on that in the 'Radiotherapy' chapter.

Types of surgery

There are numerous types of surgery for breast cancer

Lumpectomy

Also known as a partial mastectomy, the aim is to spare as much of the breast as possible. However, how much tissue is removed will depend entirely on the placement, size and spread of the tumour, as well as the surgeon's decision on the day. Usually the shortest operation and thus the lowest risk and shortest recovery time. Can sometimes be performed on an outpatient basis and thus not requiring overnight stay in hospital.

Mastectomy

Removal of the entire breast. Higher risk than the lumpectomy, with longer recovery time and requiring overnight stay.

Nipple sparing mastectomy

Removal of the breast's underlying tissue, leaving the skin and nipple intact.

Skin sparing mastectomy

Removal of the nipple and breast's underlying tissue, leaving as much skin as possible.

Bilateral mastectomy

Also known as a double mastectomy, entails removal of both breasts. Higher risk than the mastectomy, with  longer recovery time and requiring additional overnight stays in hospital.

Reconstruction

An optional procedure usually involving silicon or liquid inflatable implants or tissue grafted from the tummy or back. Can be performed immediately after the breast removal surgery or at a later date. Additional follow up work can be performed at later dates to further correct shape and size.

Nipple reconstruction

A number of options exists for instances where nipples are removed. Can be stick on nipples, tattooed or shaped using remaining breast tissue.

Sentinel node sweep (removal)

Removal of lymph nodes - ideally removing infected nodes - which are biopsied to gauge how far the cancer cells have spread.

Dealing with side effects

The following is a non-exhaustive list of possible issues arising from surgery. Note that in many or most cases there'll be very little you can do to fix the issues beyond providing emotional support and flagging them with the breast care team. If you're able, you may be needed to do home dressing changes - I did. Jen and I found it useful to take pictures of the healing process to track changes in wounds, bruising and so forth.

Nerve damage

As I'm sure you know, nerves run throughout the body. As the size of the surgery increases and the area of tissue being removed grows, so will the likelihood of nerve damage. This can result in tingling, 'jangling' feelings in the affected areas, as well as electric-like pain, pins and needles or simply no feeling at all. In many cases some feeling may return but there's no guarantee of this and much will depend on the extent of the nerve damage. Of course, the surgeons will do their utmost to minimise this damage, but it's simply unavoidable where this type of surgery is concerned. The same applies to lymph node removal.

This loss or change in breast sensation can have a direct impact on how your partner feels about herself and can understandably take a long time for her to come to terms with. This can result in a decreased desire for sexual intimacy (see chapter: Intimacy), feelings of being less than a woman or generally unhappy. While it's not the best comparison, I think of it as akin to having testicles removed. I'm pretty certain I'd feel differently if that were the case for me.

Loss of nipple(s)

It's quite surprising how much importance we men attach to the nipple. On a man I think they're 'meh' (though millions of people may disagree!) but on a woman I think they're innately feminine. I think perhaps it's because they're used to nourish our offspring. Nipples are bundled with nerves and the loss of one or both nipples will result in decreased sensation for your partner. It may also change the way your partner feels about herself.

Scarring

The surgeons will do their utmost to keep scarring to a minimum. They will use internal stitching and even glue as part of the repair procedure. Despite this, scarring is almost inevitable. The extent of the scarring will depend entirely on the procedure being performed. Obviously, a small lumpectomy is going to have far less scarring than a double mastectomy. The surgeon may be able to give you a good idea of how much scarring is anticipated once the surgical procedure has been decided, though there are no guarantees because the surgical 'strata' can change based on the surgeon's discoveries once inside the breast.

Swelling

Swelling can appear at any part or parts of the surgical site. If it's not picked up by your partner's primary care providers - usually the breast care team will check for swelling and fluid build-up - be sure to bring it to their attention. While it can be perfectly normal to have swelling and inflammation in the short term, it can also mean infection which needs to be treated with antibiotics.

Drains

For sentinel node sweeps and mastectomies it's normal to have drains. These are surgical rubber tubes which are inserted into a wound to drain off any post-surgery fluid and prevent build-up. Once your partner is discharged from the hospital, you or she will need to monitor the fluid quantity and possibly change the bottles. The drains don't usually hurt but they do hamper natural movement.

Fatigue

It takes quite a lot of energy for the body to heal, so it's very likely your partner is going to be zonked out on a regular basis. Make sure she gets a well-balanced diet with plenty of fresh fruit and veg, as well as protein. This will help keep energy levels up without spiking and will also aid the overall healing process.

Pain

Of course there's going to be pain and it's different for everyone as we all have differing pain thresholds. But not necessarily just the usual brand of pain. Besides soreness from the incisions and bruising caused directly by the surgery, the damage to nerves can result in anything from pins and needles, through burning, shooting, stabbing and jolting 'electric'-like pain. Be sure to keep a note of your partner's pain levels. Your primary care team will be able to provide your partner with appropriate medication if required.

Bleeding

There is always a chance of bleeding after surgery - sometimes it's normal, sometimes it's not. It's always best to get it checked out until there's certainty either way, particularly if bleeding starts when there wasn't any previously.

Blood clots

You and your partner need to look out for the following:

Pain, swelling or warmth in your partner's leg.

Red or discoloured skin on your partner's leg.

Veins sticking out.

Shortness of breath, painful breathing or coughing up blood.

Sudden chest pain not directly relating to surgical incisions.

Your partner is going to be laid up for a while after the surgery. During this time, she will probably be advised to wear pressure stockings to help prevent blood clots. Make sure she wears them.

Infection

As with any surgery or open wound, there is always a risk of infection. It's important to keep the wound clean at all times. Follow-up care with the breast care team will ensure the incisions are kept clean but do keep an eye out for redness and 'tracking' where infection, usually in the form of discolouration, is moving away from the initial wound site.

Bruising (Haematoma)

You're probably familiar with bruising - yellow/red/purple blotches. Keep an eye on them but don't be overly concerned immediately after surgery as with any traumatic injury to the body, bruising is normal and natural. Obviously flag it with the breast care team if it doesn't improve. I found it helped to have comparison images to make sure it was going in the right direction.

Fluid (Seroma) build-up

Nature abhors a vacuum and so does the body. Essentially, anywhere in the body when tissue has been removed can result in fluid build-up. The drains that the surgeon inserted should handle this and the breast care team will check for build-up on your follow-up visits. However, do bring it to their attention if you or your partner notice any fluid collecting. It could mean the existing drain isn't doing its job properly or a drain is taken out too soon and needs to go back in.

Chemotherapy

At a glance

No two people's chemotherapy is the same.

How will it be administered?

How often will it need to be administered?

Ask how long each of the treatments take, assuming no delays.

Ask what side effects are expected.

Ask if there are any side effects that you should be particularly aware of - such as life threatening.

Ask what to do if you experience side effects.

Ask what you can do to improve outcome.

Ask how you can aid recovery/healing.

Ask if your partner should stop or start anything, such as medicines or food.

Jen was really scared the first time - I was too. I made sure I stayed by her side as each new drug was administered to ensure I could raise the alarm if she reacted to the drug. I also made sure there were no leaks.

Some (probably most) chemotherapy drugs are extremely toxic.

On the morning of the second set of Jen's chemotherapy, she was due to have her first dose of cyclophosphamide. We were seated opposite a lady who suffered a very severe reaction to the same drug. She started to have acute breathing difficulties, started to go into shock and BAM! the chemotherapy nurses were on the case, administering counter medications, making the lady safe and well again and getting her stable. The team assembled in seconds, doctors appeared from nowhere and she was looked after so swiftly and so competently, we were comforted (though still scared) that should anything bad happen, the medical teams around us were well rehearsed and capable of countering pretty much anything.

Blood tests are taken prior to each treatment being administered - usually a week before the treatment. Checking for white cell counts, liver function plus a load of other metrics I won't pretend to understand. The results of the blood tests are essential in detecting issues with the chemotherapy.

What chemotherapy, if any, your partner is going to have and at what stage of the treatment plan she receives it will depend entirely on the grade and stage of the cancer. There is a massive range of cancer drugs and combinations. The most common are listed below.

Your partner will need to sign consent forms which detail the specific drugs and their associated side effects. They can make for a very daunting read. I recommend you read them so you fully understand the risks involved but remember the decision for treatment is entirely your partner's.

Before the treatment starts, you may be able to go to the oncology clinic for orientation - this gives you a good idea of where the clinic is and what you need to do when you first get there. It's geared up in a general manner, so the person doing the orientation won't be able to answer questions about your partner's specific treatment, so do keep that in mind.

On the day, make sure you leave with plenty of time to spare to allow for unexpected traffic. Of course, this will depend on how far you are from the hospital. In our case it was an hour's drive, so we left with 30 minutes to spare each time. Also have a good idea about the parking arrangements and where you need to be going for the treatment. You should be able to either get subsidised or completely free parking.

Once you're booked in by reception, you'll be taken to your treatment chair - this will be a comfy chair for your partner and a cast iron spike (or similar) for you. Each chair has a drip feed machine that will be used to administer the treatment. They make strange beeps from time to time - usually when flow is obstructed and when they are running on battery power. Battery power enables your partner to make toilet visits.

Once seated, the chemotherapy nurse will insert a cannula, which is a needle that contains a flexible plastic tube. Once inserted, your partner should have a reasonable range of movement in her hand as the tube bends.

The first 'flush' fluid will be administered to open up flow to the vein, followed by either anti-emetics (anti-sickness) medication and/or steroids to prevent adverse reaction to the chemotherapy drug. Each time a drug is administered it is preceded and followed by a flush. Therefore, if your partner is having two chemotherapy drugs and, say, anti-emetics, there will be a flush, followed by anti-emetics, then another flush, chemo drug one, another flush, chemo drug two and then a final flush. So, a total of seven bags will be infused.

You may have heard terrible stories about patients being poisoned by overdose, but there are incredibly stringent checks and balances in place to ensure this doesn't happen. For example, before any chemotherapy is to be administered, the nurse performing the administration will actively ask your partner to identify herself. I say actively because they cannot accept passive answers. Thus, the nurse will ask your partner's name and date of birth. If for any reason your partner cannot provide this information, the treatment will NOT proceed. This will happen for every single instance the drug is given. Therefore, if your partner is having three chemotherapy drugs in one session, the nurse will need to obtain a positive ID from your partner for each one. At our oncology clinic, the procedure was for two nurses to check each administration for each patient. Personally, I wouldn't have it any other way.

If you're interested in reading the documented guidelines for various NHS trusts, do an internet search for 'uk chemotherapy administration guidelines'.

The number of treatments your partner is having in a given session will dictate how long you're going to be in the chemo unit and therefore what you need to take with you. The treatment will be dictated by the type of cancer your partner has. If it's her first time, your partner will likely be observed for an hour or so after each chemotherapy infusion to ensure she doesn't have any acute adverse reactions. So you'll probably need some light entertainment and a snack and drink. If your partner is having multiple treatments, say, epirubicin, cyclophosphamide and herceptin, then you're likely to be in the chemo unit all day, so you need plenty of entertainment and sustenance.

The following is a list of common breast cancer chemotherapy drugs. It almost certainly isn't complete, though part of my ongoing work does include keeping this list up to date, so if you're reading the latest version of the book, it should be reasonably close to comprehensive. The reason I say 'reasonably comprehensive' is because the drug names were taken in the main from Macmillan Cancer Care, Cancer Research UK and Breast Cancer Care. Annoyingly, their lists of breast cancer drugs don't all match, so I have researched each one in turn to ensure it is a de facto breast cancer chemotherapy drug. To my (albeit limited) knowledge, it's the most comprehensive list of breast cancer-specific chemotherapy drugs available in the UK right now. If you find a more thorough list, please do let me know and I'll update accordingly. I have provided links to my sources at the end of the list in case you want to do your own research. Alternatively, if you want to look into one of the items on the below list, simply type it into a search engine. Might be worth making a cuppa before you start - it can make for heavy reading. Oh yeah, one other point - new cancer treatments, including chemotherapies, are being researched every day. If something isn't on this list that should be, please do let me know.

Abraxane® (Nab-paclitaxel)

AC: Doxorubicin (Adriamycin®) & Cyclophosphamide

Adriamycin® (Doxorubicin)
Bleomycin
Caelyx® (Liposomal doxorubicin)

CD: Capecetabine (Xeloda®) and Docetaxel (Taxotere®)

Capecitabine (Xeloda®)
Carboplatin
CE: Carboplatin & Etoposide

CMF: Cyclophosphamide, Methotrexate & 5 Fluorouracil (5FU)

Cyclophosphamide
Docetaxel (Taxotere®)
Doxorubicin (Adriamycin®)

EC: Epirubicin (Pharmorubicin®) & Cyclophosphamide

E-CMF: Epirubicin, Cyclophosphamide, Methotrexate & 5 Fluorouracil (5FU) (Epi-CMF)

EP/PE: Etoposide (Etopophos®, Vepesid®) & Cisplatin

Epirubicin (Pharmorubicin®)
Eribulin (Halaven®)
Etopophos® (Etoposide)
Etoposide (Etopophos®, Vepesid®)

FEC: 5 Fluorouracil (5FU), Epirubicin & Cyclophosphamide

FEC-T: 5 Fluorouracil (5FU), Epirubicin, Cyclophosphamide & Docetaxel (Taxotere®)

Fluorouracil (5FU)
GemCarbo: Gemcitabine (Gemzar®) & Carboplatin
Gemcitabine (Gemzar®)

GemCis (or GemCisplat): Gemcitabine & Cisplatin

Gemzar® (Gemcitabine)
Halaven® (Eribulin)
Idarubicin (Zavedos®)
Liposomal doxorubicin (Caelyx®, Myocet®)
Methotrexate
Mitomycin (Mitomycin-C Kyowa®)

Mitomycin (Mitomycin-C Kyowa®) & Fluorouracil (5FU)

Mitoxantrone
Myocet® (Liposomal doxorubicin)
Nab-paclitaxel (Abraxane®)
Navelbine® (Vinorelbine)
Oncovin® (Vincristine)
Paclitaxel (Taxol®)
Paclitaxel & Carboplatin (Taxol®/Carbo)
Pharmorubicin® (Epirubicin)

PTD: Pertuzumab, Trastuzumab (Herceptin®) & Docetaxel (Taxotere®)

TAC: Docetaxel (Taxotere®), Doxorubicin (Adriamycin®) & Cyclophosphamide

Taxol® (Paclitaxel)
Taxotere® (Docetaxel)
TC: Docetaxel (Taxotere®) & Cyclophosphamide
Vepesid® (Etoposide)
Vincristine (Oncovin®)
Vinorelbine (Navelbine®)
Xeloda® (Capecetabine)
Zavedos® (Idarubicin)
Sources:

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens
https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/chemotherapy/chemotherapy-drugs
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs

Dealing with side effects

There is a broad range of side effects with chemotherapy. The following non-exhaustive list gives you an idea of some of them.

IMPORTANT! Before you read this list, keep in mind that these are some of the common AND uncommon side effects of ALL chemotherapies. Not ALL chemotherapies have ALL of the following side effects and there's nothing to say your partner will encounter ANY of them. The list below is to demonstrate how important it is to be aware of your partner's medication and the potential side effects she MAY encounter so you can be ready to support her.

Similarly, it's vitally important to listen to, read about, digest and understand fully the side effects your partner is potentially going to encounter during chemotherapy as some can be life threatening, often alarmingly quickly, if not addressed in a timely manner. These can be during the administration of the drugs as well as at home.

Allergic reaction

It's common for strong antihistamines, steroids and other preventive medicines to be administered before, during and after chemotherapy. Allergic reaction can occur during administration as well as afterwards. There is a wide range of symptoms which present themselves on a sliding scale of severity. Swelling, hives, rashes, breathing difficulties, itching, blood pressure changes and more are all possible. Be sure to notify your primary care contact if you encounter any reactions. As a general rule, if your partner doesn't react badly the first time the drug is administered, she's far less likely to in future (though it's not impossible).

Hair Loss

Perhaps the most well-known side effect of chemotherapy, probably due to its visibility, is hair loss. Not everyone loses their hair, though there's a strong chance they will. I can't tell you and your partner how to approach this, but I can tell you how we did as well as point out the excellent resources available to people. In our case, Jen started off with a 'Pixie cut'. Like I didn't, as a bloke you probably don't have a clue what that is - it's basically a very short hair style - similar to the Pixie in Peter Pan. That was to essentially acclimatise Jen and everyone else to short hair. As treatment progressed, Jen's hair thinned out until we reached the point where she thought it best to shave her head.

It's worth noting that a 'cold cap' is available as part of chemotherapy, but it isn't guaranteed to work, is uncomfortable and will prolong the timing of the treatment. We gathered it wasn't good for people prone to migraines, either. Jen opted not to use it.

Macmillan provides a 'Look Good Feel Good' course and the wigs nowadays are indistinguishable from real hair. Also, it's amazing what you can do with scarves nowadays, though your partner will probably just want a light beanie hat to wear at home to keep her head warm.

Nausea, Vomiting, Loss of appetite

Another well-known side effect of chemotherapy, of course, is vomiting. On its own, in isolation, it doesn't pose any great risks, though if your partner is nauseated or vomiting, speak to your specialists because they can arrange for several different anti-nausea and anti-emetics (anti-sickness) medications. If the first one they try doesn't work, tell them again and they'll try the next one until your partner's sickness is managed. Jen vomited up the first ones they gave her....

Continuous, unchecked vomiting - that is, prolonged and continual bouts - can be life threatening and need to be addressed. One immediate effect of this type of vomiting is dehydration, particularly if your partner is puking up the fluids she takes on board before she's had a chance to absorb them. Acute and/or chronic dehydration, besides directly affecting the cancer treatment and preventing the toxins from being flushed out, can lead to organ failure and death. Make sure your partner is taking electrolytes on board with plenty of fluids. Sports drinks are particularly good for this.

Cognitive impairment ('chemo brain')

Difficulty thinking and/or remembering are quite common side effects. You'll probably hear the phrase 'chemo brain' on your travels. Keep an eye out for it and try to do some of the mental heavy lifting for your partner. For example, it's probably not a great idea if she does her tax returns unless you're certain she's up to the job. I mean, some people enjoy that sort of thing. I've no idea why though. Don't forget about the 'Lists' chapter to save you and her time and mental effort when you're planning.

Sore mouth & changes in taste

This can be either the tongue, gums, cheeks, the throat - pretty much the whole mouth. It's essential your partner practises good oral hygiene. There are several mouth washes that can be prescribed to help with discomfort as well as to ward off ulcers and the like. It's also worth your partner visiting the dentist before treatment starts but it's very important to make sure you check with the oncologist before doing so as some treatments, such as Zoledronic Acid for bone protection, can cause very serious jaw issues (such as necrosis (death) of the bone) if the dentist performs certain types of work too soon before or after treatment. We found Iglu to be particularly effective in the relief of mouth ulcers.

Bladder irritation & urine discolouration

Your partner may be no stranger to urinary tract infections but it's important you tell your primary care provider if she experiences discomfort when urinating. This could be caused by irritation of the bladder lining from certain chemotherapy drugs. Drugs can be prescribed to help with this, but the best way to ward off irritation and infection is to stay well hydrated - plenty of water - and to urinate as soon as the need arises. Some chemotherapy drugs can cause discolouration of the urine - notably Doxorubicin can cause the urine to turn red or pink directly after treatment. Jen's was the colour of rose wine temporarily. As with everything, if you're not sure, flag it up.

Loss of fertility

Some chemotherapy drugs can cause temporary or permanent loss of fertility due to an effect on the ovaries. Needless to say, you shouldn't be trying for a baby while your partner is going through treatment but do speak to your oncologist about fertility before treatment starts if you're are planning to have children. Coupled with loss of fertility and, again, due to the effect on the ovaries, are menopausal symptoms, such as hot flushes, night sweats, erratic mood/emotion swings, aches and pains and vaginal dryness. Again, flag any uncontrolled or uncomfortable symptoms.

Eye discomfort and runny nose

Some chemotherapy drugs affect the mucus membranes and this can cause eye soreness and a really, really, really annoying (for your partner) runny nose. Jen reached the point where she would plug her nose with tissues. The oncologist may be able to prescribe nasal sprays and/or eye drops as appropriate. Buy your partner the softest, gentlest Aloe Vera-infused tissues you can lay your hands on to save her nostrils from chafing. Lip balms are particularly good for chaffing relief.

Weight changes (loss/gain)

Making sure your partner has ready access to freshly prepared, nutritious home cooked foods is important for her to maintain a healthy weight. However, despite your best efforts, weight changes can and do occur during chemotherapy, whether through loss of appetite due to chemotherapy or increased appetite from the peripheral steroids often given pre- and post-chemotherapy administration. If you can't prepare food fresh, it helps to batch cook nutritious meals and freeze them so they're quick and easy to heat up in the microwave.

Skin changes

You partner's skin may react in various ways, including itchiness, soreness (particularly hands and feet) and dryness. Any soreness at chemotherapy injection sites should be reported as soon as they are known because some chemotherapy drugs are extremely toxic when exposed to the air and in contact with skin. This is particularly important to keep an eye on during administration - any leaks need to be reported as a matter of urgency. If your partner's hands and/or feet become itchy, red or sore, the oncologist should be able to prescribe a topical application to ease discomfort. For dry, flaky skin, good quality moisturiser will help.

Nail changes

Your partner's finger and toe nails may become ridged, more brittle and discoloured during chemotherapy. Some ladies have had good results using dark nail polish, though I'm not convinced there's any science to back this up, but there's certainly strong anecdotal 'evidence'. Nails will usually return to normal after treatment.

Fatigue

Fatigue is quite normal for many patients going through chemotherapy. It generally can't be treated with anything other than rest. Even so, keep communicating all side effects to the oncologist all the same.

Heart changes

I know. The list seems endless. But keep in mind that there's no certainty your partner will be affected. All the same, if the chemotherapy drug(s) your partner is prescribed are known to affect heart function, she will have a heart function test before, during and after treatment to establish if there are any pre-existing issues and to track any changes that may occur.

Liver and Kidney changes

Some chemotherapy drugs may affect either or both of these organs. Your partner's blood results - taken before each chemotherapy cycle - will indicate any issues and catch undesirable fluctuations in various blood markers which are monitored throughout treatment.

Reduced white blood cell count (increased risk of infection)

Another good (but probably lesser known (I didn't know before Jen's treatment)) example of side effects is an increased risk of infection. So you need to act quickly if your partner spikes a temperature during the chemo treatment cycles (at any time). Why? Because some chemotherapy reduces white blood cell count, compromising your partner's immune system which, in turn, opens her to infection. Untreated infection can quickly lead to sepsis, causing systemic organ failure and death. This is why it's so important your partner's temperature is regularly checked (by you and/or her), and especially before taking medication that normalises the body's temperature regulation - such as paracetamol. Of course, if this is likely to be something you need to be aware of, your specialist will make you aware of it, as well as advise you of procedure in the event of a temperature spike. For example, Jen was given a card that basically instructed A&E staff that Jen needed broad spectrum, IV antibiotics in the case of a temperature. No blood tests to identify the infection, just straight on to IV within an hour of presenting with a temperature. Conversely, this happened three times during Jen's chemo. Luckily we had her emergency overnight bag (see last item in 'Lists' chapter) in the boot of the car on all three occasions, though Jen throwing a temperature at 3 am wasn't fun. But I digress.

Reduced red blood cell count (anaemia)

Symptoms of anaemia can include tiredness, dizziness and breathlessness. If your partner experiences any of these symptoms they need to be reported to your primary care provider as your partner may need a blood transfusion to get levels back to normal.

Reduced platelets in the blood

A reduction in the blood's platelet count can result in easier bruising and bleeding. Platelet counts will be monitored as part of your partner's standard blood tests and, if they are low, steps will be taken to get them back up to expected levels. This will usually be via transfusion.

So...it's important to communicate any uncontrolled side effects to your specialist healthcare provider, key worker, breast care nurse, oncologist or GP. If you're unsure or otherwise don't know what to do, call your specialist or the NHS line (111) or get your partner to a hospital. It's better to ask and it be nothing than to not ask, it turn out to be something and your partner dies as a result. Imagine how foolish you'd feel then....

Jen and I found it helped to break it down into three-weekly blocks so a new list would be created after each chemotherapy cycle. To give you some idea of how we did it, here is one of the lists of symptoms we kept so we could communicate them to the oncologist in our three weekly appointments. Note that your partner may or may not experience these or any number of other symptoms. They are specific to Jen and NOT your partner!

Chemo 5 EC side effects
Day 1
Tired and heady
Nausea by 4pm
5pm Took metoclopramide
Vomited 6pm
Vomited 8pm

Took ondansetron 8mg at 20.07 as per advice from L at oncology clinic

21.00 took metoclopramide
Vomited 22.00
Sleeping tab 22.45
Vomited 23.30

Tried queasy pop (NB. I have no idea what queasy pop is....) and flat lemonade 23.45

Day 2

Took anti sickness 08.00 with steroids with ginger biscuit

Headache & tired

12.00 anti sickness and steroids with ginger biscuits
vomited twice
Day 3
Tired and nausea
Banana 12.00 with tablets kept down
Hungry 3pm!
Diarrhea
Day 4
Tired and nausea
Diarrhea
Day 5
Dry toast and green tea
Tummy unsettled
nausea
Lucozade and chicken tolerated later in day
Very weak
Diarrhea
Porridge and high protein milk drink
Day 6
Tiredness / Weakness
Palpitations
Dry eye
Day 7
Leg muscle weakness
Tired/weak
Headache
Dry eye
Definite loss of eyelashes/brows
Emotional
Day 8
Muscle weakness legs
Reflux
Sore throat
Day 9
Legs better
Sore throat
Constipated
Tired

I chose Chemo 5 (of 7) because the side effects got worse cumulatively and this was when Jen's vomiting was uncontrolled. As you can see, the list of symptoms  doesn't need to be high-brow prose, just enough for you to be able to reliably communicate approximately what happened and when. The oncologist can decide what's normal or not and what can be done (if anything) to counteract or provide relief. Do NOT let your partner suffer in silence. What may seem like a normal reaction to you or her could be a potentially life threatening reaction to the practised eye. If you're not sure, ask.

I say this, because I dropped the ball - specifically with this point in the treatment. Jen's vomiting was on a Friday - I called the breast care unit on the emergency number they'd given me, but the person I spoke to, 'L', suggested I use the second drug Jen had been given. It didn't work.

Subsequently, I let Jen deteriorate inadvertently because I neglected to ensure her electrolytes were kept up. She had plenty of fluids, but none that contained the vital minerals she needed replacing. The penny dropped on the Sunday when she'd become very, very weak. I went out and bought all the Lucozade, breakfast drinks and anything else I could find with electrolytes, short of the car battery, that I could find. She responded quite rapidly after that.

When we spoke to our key worker, I was told in no uncertain terms that Jen should have been hospitalised on an IV drip.

The two remaining EC treatments entailed a 'special' (expensive at £70 each) tablet that stopped the initial nausea, followed by an even stronger anti-emetic which didn't entirely stop the nausea but did stop the vomiting.

Don't make the same mistake I did. Uncontrolled vomiting, a high temperature, hell, almost anything, can be potentially fatal if it's uncontrolled and not flagged up. If you're uncertain, ASK!

Targeted Therapy

At a glance

Ask how long each of the treatments will take, assuming no delays.

How will it be administered?

How often will it need to be administered?

Ask what side effects are expected.

Ask if there are any side effects that you should be particularly aware of - such as life threatening.

Ask what to do if you experience side effects.

Ask what you can do to improve outcome.

Ask how you can aid recovery/healing.

Ask if your partner should stop or start anything, such as medicines or food.

Jen's targeted therapies consisted of Trastuzumab (Herceptin®) and Pertuzumab (Perjeta®). At the time, I had no idea what they were and because they were partially administered in conjunction with chemotherapy drugs, I assumed they were chemotherapy drugs too. It wasn't until I carried out research much later that I understood the distinction.

Also known as biological therapy, targeted therapy consists of a range of medicines which all pretty much seek to do the same thing: prevent the growth and spread of cancer.

The deciding factors as to whether they are used are quite complex but, as a general rule, they revolve around whether the cancer cells are human epidermal growth (HER2) and/or oestrogen receptor (ER) positive or negative. Thus, you may see or hear HER2+/HER2- and ER+/ER- written or mentioned at some point.

For example, if a tumour is found to be human epidermal growth positive (HER2+), then a drug such as Trastuzumab (Herceptin®) can be used to prevent cell division and thus growth and spread of the tumour. Used in conjunction with chemotherapy, which kills cancer cells, and hormone therapy, which prevents cancer cells from forming, you have a combined effect of stopping growth of existing cancer, killing the existing cancer and preventing the cancer from coming back. I'm grossly oversimplifying things here but I hope it helps you grasp the general principal.

It's beyond the scope of this book and, frankly, my ability, to fully illustrate or understand every facet of targeted therapy. As far as I'm concerned, you and I don't need to grasp the exact cellular mechanisms by which these things work, just as long as they do and that your partner gets the ones she needs.

The methods used to administer these drugs are very varied too, ranging from tablets, through to injections and infusions (IV drips). Targeted therapy can also be administered before, during and after the other treatments your partner may be given.

At time of writing, the following targeted therapies are in use in the UK:

Abemaciclib (Verzenios®)
Afinitor® (Everolimus)*
Everolimus (Afinitor®)*
Herceptin® (Trastuzumab)
Ibrance® (Palbociclib)*
Kadcyla® (Trastuzumab emtansine)
Kisqali® (Ribociclib)*
Lapatinib (Tyverb®)*
Palbociclib (Ibrance®)*
Perjeta® (Pertuzumab)
Pertuzumab (Perjeta®)
Ribociclib (Kisqali®)*
Trastuzumab (Herceptin®)
Trastuzumab emtansine (Kadcyla®)
Tyverb® (Lapatinib)*
Verzenios® (Abemaciclib)

*Limited NHS access at time of writing. Sadly, NICE, the governing body which decides what drugs are available as standard on the NHS, has a tendency to restrict drugs based on cost.

Dealing with side effects

There is a broad range of side effects with targeted therapies. The following non-exhaustive list gives you an idea of some of the listed side effects.

IMPORTANT! Before you read this list, keep in mind that these are some of the common AND uncommon side effects of ALL targeted therapies. Not ALL targeted therapies have ALL of the below side effects and there's nothing to say your partner will encounter ANY of them. Jen has regular Herceptin injections with no side effects whatsoever. The list below is to demonstrate how important it is to be aware of your partner's medication and the potential side effects she MAY encounter so you can be ready to support her.

Diarrhoea and/or constipation
Change in taste
Bruising
Abdominal pain
Headaches
Blood clots
Shortness of breath and coughing
Raised blood glucose levels (hyperglycemia)
High cholesterol
High blood pressure (hypertension)
Bowel perforation
Fistula
Indigestion and heartburn
Finding it difficult to sleep
Headaches
Back pain
Muscle and joint aches and pains

Menopausal symptoms (such as hot flushes and night sweats)

Nose bleeds

Osteonecrosis of the jaw (when bone in the jaw dies)

Slow wound healing

Numbness and tingling in hands or feet (peripheral neuropathy)

Low levels of potassium in the blood

This is all pretty scary shit, right? But, remember, there's NOTHING that says your partner will experience any of them. If she does, the chances are it will be the common, less severe ones.

Administration of these drugs is closely monitored by the oncology team. The regular blood tests, for example, will be aimed at picking up any irregular readings and they WILL be looking for issues that are pertinent to the specific drug regimen your partner is being given. So you don't need to be looking out for, say, low potassium, because they'll be looking out for it. The more common side effects will need to be reported by you or your partner at either your regular oncology sessions or via your key medical team members, depending on the severity of the symptoms. A good example of this is if your partner vomits once after treatment then settles back to normal, this should be noted on the list of side effects you or your partner keeps so it can be reported at your next oncology meeting. This way they can take appropriate steps to prevent it from happening after future sessions. If the vomiting is uncontrolled, however, it needs to be reported to your partner's primary care providers as a matter of urgency as your partner could become far more seriously ill as time goes on.

If you have ANY doubts or concerns, call the number(s) for your primary care provider(s) and ASK. They're trained for this. You're not. It's ALWAYS better to ask and be wrong (worst case, you feel foolish temporarily) than to not ask and be right (worst case, your partner dies and you blame yourself for the rest of your days).

I'm not trying to scare you...well I am trying to scare you (a little bit), but in this case it's justified I feel.

Radiotherapy

At a glance

How long will each of the treatments take, assuming no delays?

What is the target area?

How often will it need to be administered?

Ask what side effects are expected.

Ask if there are any side effects that you should be particularly aware of - such as life altering.

Ask what to do if you experience side effects.

Ask what you can do to improve outcome.

Ask how you can aid recovery/healing.

Ask what cream(s) to use before and after treatment.

Ask if your partner should stop or start anything, such as medicines or food.

The size, grade and position of Jen's tumour (49 mm, offset from but near to the nipple of the left breast) meant the skin, subcutaneous tissue and chest wall muscle was still at risk of reforming cancer, despite both breasts being removed. She was advised that radiotherapy reduced recurrence by an additional 5%. We figured, taking the preventative hormone therapy into consideration as well, it was a good percentage to knock off, so Jen opted for the therapy. Notwithstanding that the radiotherapy could cause cancer later in life. Gah!

Because of work commitments, I couldn't take the three hours out of each of the 15 days of treatment (our hospital was an hour away), and so I wasn't able to be with Jen for every session, much to my frustration. It was the only time, besides the Macmillan 'Look Good Feel Good' session, where I wasn't with Jen for every appointment. However, family who, up to that point, had been gagging to help, stepped in and took turns taking Jen. I was there for the first appointment, the middle one and the last one. It's worth noting that radiotherapy was the least unpleasant of the 'big three' treatments though it's not without its discomforts.

One of the problems we faced was Jen's fatigue. She was still healing from the chemotherapy and surgery and we were told that the radiotherapy would only compound it. So, she wasn't safely able to drive herself. I mean she could have, but we considered the risk too great, plus she would be there alone for most of the sessions and that was less than ideal. So we called on family to help, which they gladly did. In fact, they all wanted to help so much but, beyond continual love, emotional support, flowers and care packages, which of course were deeply appreciated, there was little they could do to help fix Jen. So Jen suggested a rota and my Mum, and two Aunties eagerly agreed. Jen's folks would have helped too but they were too far away.

The area to be treated had to be fully healed before radiotherapy could begin, as exposing wounds to radiation can slow healing. There was one tiny area where the three incisions met in the middle that had a miniscule scab that we all had to keep an eye on but it was considered safe to go ahead.

Approximately one month before the radiotherapy began, Jen went to the radiotherapy unit to be 'mapped'. This involved detailed scans of the target area - that is, the area to be exposed to the radiation - along with three tiny, permanent tattoos which would be used for future targeting. The machine used was a formidable piece of equipment (Jen took a picture for me) and had a strange set of arm and leg stirrups which were carefully measured, with Jen in position, so it could be set exactly for each session.

Jen needed to stay in the same position for each session. She found it uncomfortable but not painfully so. Imagine having to lean on the same arm for 20 minutes until it gets pins and needles - something like that. She didn't feel the radiotherapy 'doses' when they were administered, but the skin in the targeted area did start to change colour. Because she was bare chested during the sessions and because the room was heavily air-conditioned to ensure adequate machine cooling, she was cold, so she took a small microfibre blanket in with her to keep her legs warm.

By the 15th session, Jen was wiped out physically. She very much lacked energy and her normal get up and go. Mercifully there was no sensation in the targeted area due to the nerve damage caused by the surgery, so she couldn't feel the damage to the skin. I would liken it to severe sunburn, and it was largely treated as such.

After each session, Jen would get home, expose her shapely new breasts to the bedroom (and me), and slather them in Aloe Vera gel. Then she'd leave them to air. At all other times, she used Aveeno moisturiser but moved on to E45 cream as she preferred it. There are other products, such as E45 spray, as well as R1 and R2 products, but we think the ones Jen used worked well. Jen kept the Aloe Vera gel in the fridge. Not because she could necessarily feel the cooling effect, but because she thought the cooling action would help limit damage from the radiation.

We were told that the side effects would 'peak' around two to three weeks after the final dose was administered, then healing would begin again in earnest. My observations suggested it was around two weeks. We noticed some slight blistering of the skin around week two (following the final dose) and 'Hydrogel' was prescribed.

It took a few more weeks for her dark purple breast to return to normal. Now it looks faintly more tanned than the other. Nothing obvious but definitely a shade darker if you're looking for it.

Of all the treatments, Jen found radiotherapy to be the 'easiest'. Of course, it took a toll on her strength and slowed her healing for a time, but she recovered well once her body was given time to 'catch up' with what was happening to it (my interpretation).

Jen wasn't fully recovered after eight weeks, but she was well enough to make a phased return to work.

You're going to have to sort the logistics of going to and from each session, and the sessions will be every day for a set period of time. Generally, the sessions don't take long in themselves but, as with all things that involve lots of people, there are often delays. So make sure you take provisions in case you're there for longer than anticipated. I'd suggest at least some snacks, drinks and entertainment.

Make sure you leave with plenty of time to allow for traffic incidents. That will help keep things calm on the way there - anything that reduces stress levels is a good thing, after all.

You won't be able to go into the treatment room with your partner, but you can be with her the rest of the time.

Give your partner plenty of time and space to recover - she'll tire very easily and very quickly for some weeks after treatment finishes and the effects are cumulative, which means they'll get marginally worse after each treatment.

Obviously, recovery times are different for each person and will depend very much on the treatments your partner has been given as to how much stuffing has been knocked out of her. Make allowances for emotional imbalances and just keep on giving her love and as much understanding as you possibly can. Let her rebuild at her own pace - I had to keep Jen grounded as she would often push herself too hard and thus was regularly frustrated by her limitations. So, keep tabs on your partner's activities and make sure she gets plenty of rest and takes regular breaks.

You can also help keep an eye on the general health of your partner's skin, as well as help apply the various creams and gels. It's a good way of maintaining intimacy, confidence and trust between you and your partner.

Dealing with side effects

Your partner should avoid skin creams with sunblock and antiperspirants before each radiotherapy dose - they contain dioxides like titanium and aluminium. She should ALWAYS check with the radiologist as to what creams she plans to use.

Also discuss medications with the radiologist. Some medicines can cause the skin to be more sensitive which could cause an adverse reaction.

Wounds are slower to heal and can be made worse by radiation, so make sure the radiologist is made aware of any wounds your partner may have. Don't assume that because your partner has had surgery that the radiologist will be aware of any incisions. Discuss any areas that are still healing as they can be worsened by the radiation.

The following is a list of the possible side effects your partner may encounter:

Burns

As this is radiation we're dealing with here, the burns are very similar to sunburn. Think red, itchy and/or sore. Making certain your partner applies aloe vera gel as soon after each session as possible will help reduce damage and discomfort. Using unperfumed mild soap and patting dry the skin after washing will also help prevent the skin from being aggravated. Moisturising the skin, protecting it from sunlight with high SPF sunblock and wearing comfortable, loose fitting clothes made of natural fibres such as cotton will also help.

Blisters

Again, as with sunburn, some blisters can form. It's worth flagging them with the radiologist, especially if they are large.

Tiredness/Fatigue

The effects of radiotherapy are cumulative, so your partner will potentially become more tired as treatment progresses.

Encapsulation

This is where the targeted tissue tightens or hardens via scarring, which can cause the area around a breast implant or reconstructed breast to become too tight for the implant. This may not happen immediately and can even be a year or more later. A smaller implant may be possible although in some cases the implant must be removed.

Organ damage

While organ damage is rare, it's still a possibility. The radiography team will take steps to reduce the risk of this, through body positioning, careful measurement, accurate targeting, administering the dose while your partner holds her breath, keeping the heart away from the target area and so forth.

Hormone Therapy
At a glance
Which hormone(s) will be used?

How long will each of the treatments take, assuming no delays?

How will it be administered?

How often will it need to be administered?

Ask what side effects are expected.

Ask if there are any side effects that you should be particularly aware of - such as life threatening.

Ask what to do if you experience side effects.

Ask what you can do to improve outcome.

Ask how you can aid recovery/healing.

Hormone therapy is used to change the hormonal balance in your partner's body in order to change the way her cells behave. This is to reduce the possibility of a recurrence of the cancer. Usually, hormone therapy is used to suppress oestrogen, which will bring about an 'induced' menopause if your partner hasn't already reached it.

This is because oestrogen plays a part in the formation of cancer cells. I won't pretend to know how this happens at the cellular level, but the research I have done indicates that survival rates can be greatly improved by hormone therapy.

Obviously inducing menopause will have a different impact on different people as it will be happening at different times in different people's lives. In Jen's case it was a no brainer because we'd already had our family and Jen was in her mid 40s. So she wasn't far away from the menopause anyway. But if you were planning to have children and haven't had them already, this will need to be discussed with your oncologist and GP. It may be possible to preserve your partner's eggs or protect her ovaries. However, this is a complex issue that is beyond the scope of this book. For example, your partner's cancer may be hormone receptive and thus use hormones to form and grow. Obviously if that's the case, you're probably going to want to take steps to eradicate anything that's likely to increase the chance of the cancer recurring. As with chemotherapy discuss fertility with your primary care provider as there's a risk of permanent sterility .

The most commonly used hormone therapy drugs used to treat breast cancer are:

Anastrozole (Arimidex®)*
Arimidex® (Anastrozole)*
Aromasin® Exemestane*
Exemestane (Aromasin®)*
Fareston® (Toremifene)
Faslodex® (Fulvestrant)
Femara® (Letrozole)*
Fulvestrant (Faslodex®)
Goserelin (Zoladex®)
Letrozole (Femara®)*
Medroxyprogesterone acetate (Provera®)
Megace® (Megestrol acetate)
Megestrol acetate (Megace®)
Provera® (Medroxyprogesterone acetate)
Tamoxifen
Toremifene (Fareston®)
Zoladex® (Goserelin)
*Aromatase inhibitor

If your partner is prescribed tamoxifen or an aromatase inhibitor after surgery, she will need to take these for at least five years. Some will be recommended to continue the course for 10 years. This may well impact any long-term travel plans you might have, so do keep this in mind.

How long other hormone drugs are given will vary from person to person.

Dealing with side effects

The possible side effects of hormone therapy are varied but largely revolve around menopausal symptoms, such as hot flushes, night sweats, vaginal dryness, reduced sex drive and mood changes.

These symptoms can often be more intense than when the menopause occurs naturally but it's fair to say they are manageable and tolerable (I know - easy for me to say).

Other side effects include joint and/or muscle pain and stiffness, headaches, nausea, brittle bones (osteoporosis) and tiredness or fatigue.

Jen gets some of the menopausal symptoms - particularly the hot flushes.

Suffice to say, it's not pleasant for her, or me, but it's nothing compared to chemotherapy and surgery and a small price to pay if it's going to stave off a recurrence.

Clinical Trials

Jen's tumour was not well formed, smooth, defined or uniform enough - it was mixed with cyst-like tissue - so she wasn't eligible for any clinical trials running at the time. However, we did meet and speak to patients who were having trials while we were at the chemotherapy clinic having our treatment. I hesitated to include this chapter as I felt I lacked the experience to talk about the subject matter with any authority. However, I did research trials when Jen was first diagnosed, as did the oncology team, and I have written about and included the information I collated at the time. I figure at the very least you could use it as a jumping off point.

Depending on the characteristics of your partner's cancer, trial therapy may be available to her though it would be pure speculation on my part to discuss the eligibility as criteria differ from trial to trial over time.

Some trials run for longer than others and are usually performed in the same place as 'normal' chemotherapy so you and your partner would be with experienced nurses, though I think it's a fair bet you'd be with experienced nurses no matter the location. However, I believe the trials also sometimes take place at the premises of the drug research company and potentially elsewhere too - depending on the therapy itself and any constraints it may have with regards to its distribution, storage, handling and so forth.  The medicines are delivered in much the same way as the others - via tablets, injection or IV infusion.

The research I did sometimes showed a distinct overlap between drugs that are in common use in, say, the US (already cleared for use by the FDA) and drugs that are potentially going to be used in the UK. At the same time, trials can also be for drugs that have shown promise for other cancers (that is, not breast cancers specifically) but act in a very specific way on a particular cell mutation. Therefore it's not unreasonable to think the same action won't occur for breast cancers that have the same cellular characteristics as cancers found elsewhere in the body.

Because clinical trials are changing regularly and rapidly, any trial that is taking place at time of writing will potentially be closed by the time you read this though, because of the nature of some tests, they can run for years to establish the long-term results as well as the short and medium term. So the best advice I can offer is that you speak to your oncologist about any trials that your partner may be eligible for and, if you have time and sufficient information and understanding about your partner's tumour characteristics, research possible trials yourself.

I found the following resources extremely useful when researching clinical trials.

Explains the clinical trial process:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/clinical-trials

Lists of clinical trials for breast cancer:

https://www.icr.ac.uk/our-research/research-divisions/division-of-clinical-studies/icr-ctsu-breast-and-rare-cancers/research-projects/breast-cancer-clinical-trials
https://www.christie.nhs.uk/professionals/research/research-themes/breast-cancer-research-team/clinical-trials/find-a-breast-cancer-clinical-trial/clinical-trials-for-metastaticsecondary-breast-cancer/

Find clinical trials:

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial

Self Care & Healing

"Make sure you look after yourself." ~My mum

"You can't look after Jen if you don't look after yourself." ~Also my mum.

"Stay Strong." ~ Everyone else.

You'll hear and see 'stay strong' the most because it's quick and easy to say and write in cards with little to no effort required by the person saying it. But it's right. You do need to stay strong.

You need to do stuff for your mind and body to both take your thoughts off what's happening but also to remain healthy. So does your partner.

As far as it goes, your partner has a whole lot more healing to do than you, but you have a similar level of self-care to be staying on top of although how you go about it will be slightly different. Your partner only needs to focus on her own self-care, you need to focus on yours and hers.

It follows that the more you do to look after yourself, the more planning and the more coping mechanisms you have in place before, during and after your partner's treatment, and the less time you will need to recover and heal.

It feels strange to be talking about your healing when it's not you being treated, but the treatment your partner has will impact you in negative ways. Be it emotional, physical or spiritual, you're going to be taking a hit.

During treatment we became focused, utterly fixated if I'm honest, on just getting through it in one piece. Our lives revolved around cancer and cancer treatment to the exclusion of almost everything else. Jen stopped work and my output at work - when I wasn't with Jen at an appointment - took a serious dive.

I didn't realise it at the time, but it was taking a massive toll on my mental and physical health.  It wasn't until Jen's main treatments had ended and my father had died that I was really able to let my guard down and take personal stock of myself. I was a complete mess. Jen was too.

End to end - that is, from diagnosis to final radiotherapy session - the treatment took a year, give or take. That doesn't include the physiotherapy, Jen's strength building and steady recovery or any of the other myriad changes we made in our lives. It might take you a longer time or a shorter one - it really depends on your partner's condition and treatments. But it will take time.

Don't use drugs (including alcohol) and, if you do smoke, now would be a good time to quit. Nothing says insufferable prick quite like someone smoking outside the oncology wing of a hospital. Vaping, patches, lozenges or nicotine sprays are a decent investment/compromise. Also, as an ex-smoker (smugly, I quit years and years before Jen's diagnosis), I can tell you hands down who in the waiting room smokes and who doesn't. Because they stink. I could even tell you how recently they smoked and how often they wash their hands. As can every other person in that room. And every single one of them either resents or pities a smoker. Cancer is life's way of saying smoking's not for you. Just quit.

So, avoid drugs and, if you're going to do something to excess, try to make it something healthy. Exercise is a good choice, though in my experience I was always too tired holding down my day job to do much in this regard. I was also guilty of stress eating, which caused me to pile on a couple of unwanted stones. Weight I'm slowly working off to this day.

If you can, try to do something healthy 75% of whatever free time you get. Alternatives to healthy are neutral activities - gaming (but not gambling) and reading are good options - stuff that's sedentary and allows you to physically recuperate while keeping your mind off the 'what ifs'. Sleep's a good one too, so long as it doesn't mess with your circadian rhythms too much.

Don't hesitate to see your doctor if it's getting too much. I broke a couple of times before I sought help, largely because I'm not as self-aware as I could be but also because that shit creeps up on you incrementally. Each increment is shrugged off as minor but compounds with the others into a much deeper schism.

Between the three main treatments - chemo, surgery and radio, something always happened that prevented Jen and me from properly resting - between chemo and surgery, Jen's mum nearly died, so we spent a lot of time around hospitals and supporting her father (the irony wasn't lost on me), between surgery and radiotherapy, my father died.

The first time I broke, my boss asked me an innocuous question about some work I'd done and I quit my job of four years on the spot. Fortunately, cooler heads prevailed and my employer recognised I was breaking down. My doctor signed me off for a short while and my rash resignation wasn't accepted. That's when Jen's mother became ill. Which is why it's so important to have an open, running and honest dialogue with your employer. Better yet, don't do what I did and ignore the buildup of issues. Have useful coping mechanisms in place from the outset.

The second time I 'broke' was after my father died I realised that I was only getting a few hours sleep a night - this time though I nipped it in the bud and approached my doctor. He diagnosed depression and exhaustion and medicated me accordingly. It took months for me to come out of the physical, emotional and mental tailspin and I needed to take a long time off work as a result. Not so much nipping it in the bud then, more letting it go on until it became a serious problem. But that's the beauty of hindsight I guess.

Another thing to consider is any existing health issue(s) you might have and specifically how important it is to not neglect it. I've had a chronic back problem for about 15 years now and I also let that deteriorate through lack of exercise. Consequently I'm having to have physio and increased medication to try and get it back to post-diagnosis levels.

Try to maintain a positive mental attitude. That doesn't mean you have to be happy and smiling all the time. Far from it. But when you're confronted with a problem, take steps to solve it. If you can't, ask for help from someone who can. Sometimes the only way you can move a problem forwards is to get help. After all, you're not administering chemotherapy medicine or performing surgery. The solutions you and your partner need are myriad and you simply cannot address them all yourself. In fact, one of your jobs is to identify issues you can't solve and get the relevant help - whether it be for you or your partner.

A few simple rules:

Recognise that you need time and space to recover.

Always, ALWAYS accept help when it's offered. This is more difficult than it sounds for some people - particularly the fiercely independent - remember that they WANT to help. Letting them will help them too!

Unless you're fastidiously tidy by nature, employ a cleaner (if you can comfortably afford it) or have a family member help around the house for a few hours a week. Seriously. This cannot be underestimated. When you're staring down the barrel of two weeks of caring for your partner while she recovers for the next bout of chemo, you won't give a shit about whether the bins have been done. Then things will start to slide and, once they start sliding, things will get on top of you.

Never turn up an opportunity to rest.

If you feel the need to stress eat (like I did), try to binge on healthy food - it's surprising how good you feel, both in terms of meeting the urge to binge but also for making a positive choice.

Exercise when you can but don't overdo it - yoga is particularly good. If you have an intense workout schedule, you're probably going to need to dial it back a bit.

If you need a non-healthy escape, consider computer games, movies, reading, music and meditation - feeding your mind is a positive thing to do. Personally, I took great solace from my games console and playing it was one of the few times I was able to zone out and not think about the important stuff.

Seek help from professionals and use resources if or when they are offered. Services like Macmillan, Steps to Change (counselling) and so forth can go a long way to helping get YOU through the ordeal.

Other things that can help include meditation, massage, warm baths (seriously) and even things like ordering your groceries online. If you can't cope with your day to day load, find ways to drop things that are less of a priority. Also consider reduced hours or lighter duties at work if that kind of flexibility is available. If you're not sure, speak to your line manager.

Oh yeah, if it's been a while since you did anything athletic, ease yourself in gently - start at the bottom rung of the fitness ladder and work your way up. I'd been doing some treadmill walks and thought I'd got quite fit, then played badminton for an hour and spent the following week recovering and in pain.

And don't, don't, DON'T forget your coping strategies!

Intimacy

At a glance

Give your partner as much time as she needs.

Give yourself as much time as you need.

Find other outlets if you're frustrated - eg masturbation.

Be aware that your partner's pleasure centres may have changed.

Be aware that your partner's physical appearance may have changed

Try new things.

Be gentle with each other.

Hormone treatment may bring physiological change - reduced lubrication, weakened vaginal walls

Check with your care provider if it's OK for you and your partner to have sex.

Check if pregnancy is a risk.

Jen and I have always had a mismatched sex drive. That's to say, I regularly wanted sex and she was happy to go months or more without. That said, she could barely go a day without a cuddle. It took years for us to reconcile that difference...that is, for me to get used to not having sex as often as I'd like....

All joking aside, sex is almost always good when it happens and we've both always tried to satisfy and please each other.

Sex halted on the days running up to the diagnosis (understandably) and stopped almost entirely thereon in. But Jen and I have never been closer emotionally and rarely as intimate as we are today. She's...we're...still healing as I write these words and I can say that we haven't had sex for over a year now, but my perspective has changed. Utterly. While sex was never the be all and end all of our relationship, it was an important component. Hell, it still is. But in the great scheme of things it doesn't matter that much. What matters is that I still have Jen by my side (or in front of me) at the end of this process.

Suffice to say, sex with your partner will be fraught with difficulty, if not outright impossible initially and you'll be experiencing probably the longest sexual dry spell(s) of your relationship so far. The most important thing you need for this part of the journey is understanding so you can give your partner as much time and space as she needs. It's fine for you to masturbate to get you through this dry patch. I mean, it's fine if you masturbate whenever (as long as it's not, you know, in public), but you get what I mean.

During treatment, sexual intimacy beyond cuddling is likely to be a complete no-no. If there is to be any sex, it should be initiated by your partner, not you. My advice would be not to ask or even think about trying to initiate sexual intimacy. However, that doesn't mean that there can be no intimacy at all, just not the sort you're probably used to as a couple. During chemo, for example, your partner is going to be tired all the time, possibly nauseated, probably in pain and feeling completely stressed as she tries to focus her efforts on getting through the treatment. Even as a cycle comes to an end, she'll be looking to the next round and her head probably won't be in a good place emotionally.

Of course there will always be exceptions to the rule, but the general rule is: people don't want to have sex during chemotherapy, radiotherapy or before, during or after major surgery.

When your partner is ready to restart love making, there are several possible issues you may need to consider.

Hormone Therapy

If hormone therapy is used to induce premature menopause, you'll need to keep in mind your partner may not produce much or any natural lubrication. You may have used this as an indicator of her level of arousal in the past. Be assured this dryness going forwards does not mean she isn't aroused and you can be sure of this by using other cues, like body language, facial expressions, breathing and sound. Making sure you have a tube of safe, water-based lubricant to hand will make love making pleasurable for you both if there is to be penetration of any kind. You can get different flavours, colours and even sensations nowadays to improve or prolong the experience.

Another thing to consider where hormone therapy is in play is that the vaginal walls may be weaker. Oestrogen has a direct influence in both lubrication of the vagina but also on female sex organ health in general - this includes muscle strength internally. This can lead to prolapse of vaginal walls if care isn't taken, so you need to be gentle and considerate (I mean, you're both of those things already, right?). That doesn't mean you can't have fun and enjoy each other.

Body

Following surgery and radiotherapy, your partner's breasts and/or surrounding tissue are/is likely to range from tender to completely untouchable, so you'll need to cater for this. Nerve damage is another factor where the breasts are concerned and it may be that the pleasure centres your partner had on and around her breasts are now gone. Completely. It may even be there's no sensation at all or even that breast sensations are now unpleasant.

In Jen's case, she had both breasts removed, including her nipples, then reconstructed. This left scarring, changed the shape radically, made them firmer (bonus!) and left her without nipples or sensation in either of her breasts. It's possible to have the nipples reconstructed, tattooed or even stuck on (I know, stick on nipples! - guilty confession...I laughed when the breast nurse first said it) but this is ENTIRELY your partner's choice. If the nipples are removed and reconstructed, note that there won't be any sensation in them for your partner, so they'll be there entirely for visual appearances.

You also need to consider changes in your partner's body image - both in terms of how you see her, how she thinks you see her and how she sees herself. These are important distinctions. Personally, I just reprogrammed my brain to love Jen's new look even though she wasn't happy with how she felt physically. But the reality is, no matter how skilled the surgeon, scarring is inevitable at some level and this can impact on how you see things. Body change can be something as small as a lumpectomy scar, all the way through to bilateral mastectomy with no reconstruction. These changes in shape can and will directly affect your respective sex drives to greater or lesser degrees, so take steps to mitigate this. It really is possible to embrace and incorporate these changes into your love making. If it's a major issue for you, don't forget you can always start in the dark for the time being while you both get used to the new normal.

Try new stuff...and old stuff... and find what works for you both. You can use this change to perhaps become more adventurous. Hell, you could even give romance a go! On a personal note, blindfolds, sweet foods and a 'mouths only policy' can be great fun. If you're not an imaginative or creative person, books abound on the subject, ranging from the Karma Sutra, to books specifically about cancer recovery in relation to sexuality.

There's also an excellent therapeutic process to reignite sensuality called 'Sensate Focus'. It's a multi-step process whereby you explore each other's bodies - initially ignoring sex organs - that will help you connect, rediscover old pleasure zones, eliminate defunct zones and find brand new ones. It worked well for Jen and me. It might work for you too. There's a lot of literature about it online if you want to check it out.

Don't forget you can also maintain intimacy during treatment by doing things like helping your partner keep an eye on her overall health (be it breast or otherwise) as well as assist with the application of gels, creams and medicines. Even simple things like changing dressings will show her that you're not bothered by the change in her appearance - it depends on the type of relationship you have with each other of course and it may not need maintenance to that degree, though don't let that stop you from helping your partner!

Trust is essential to mutual intimacy, so helping your partner while she's receiving treatment and recovering will help keep, if not deepen, the strength of the bond between you.

Communication is also key to a healthy relationship - make sure your partner feels comfortable unloading on you while she goes through treatment. If you can, try to keep from unloading all your emotional burdens on your partner - certainly while treatment is underway - then build up gently as your partner heals so you're both sharing each other's emotional weight.

As with so many things on a journey like this, it may transpire that you're not equipped to resolve issues that you face - relationship issues can be particularly tricky to unpick - so do always consider seeking relationship counselling or therapy to help with getting things back on track.

The New Normal

Jen and I have been experiencing potentially life changing events, on a regular basis now, since the diagnosis.

And we've had to radically modify our daily lives. Or scrap plans to 'sort of' emigrate. Or things we used to do and take for granted are no longer possible or are more difficult than before.

Before the diagnosis, I practised martial arts, worked out and ate reasonably healthily. Jen was a gym bunny - she'd go a minimum of three times a week and worked out at home too.

We were at the end of a 10-year plan to get the kids through full time education and then we were going to buy a little place in Spain. Not to live there, you understand, but to dial it back a notch. Spend more time in the sun. We'd worked hard to brings our boys up in a manner and place that would give them a good start in life. Ultimately, we succeeded in the plan and were just about to embark on the next leg of life's journey when everything came to a screaming, crashing halt. Literally everything was put on hold in deference to saving Jen. Nothing was more important. OK, maybe the kids. Even Dad dying took second place, I'm ashamed to admit. But he'd lived his life, travelled the world with the Royal Navy, had two kids and made it to retirement and beyond. Jen had only done two fifths of that.

I genuinely hate cancer for putting us...me...in that position....

So, you're out of the woods and standing on a vast plane of figurative possibility. You can see to the distant horizon, filled with potential and promise. And, if you're like me, you're scared. You've been in the trenches for so long, planning from day to day - maybe even hour to hour - that you can't see beyond tomorrow. Planning anything longer than a week ahead seems risky.

Start your plans small. Short walks near water or trees or even round the block. Discuss physical limitations and don't push yourself or your partner too hard.

You're going to face further hardships in life - after all, life's a bit like that. Hopefully you'll be battle hardened by this point and you won't sweat the small stuff. You'll potentially have a completely different outlook on life. Certainly Jen and I do now. Stuff that seemed important is laughably insignificant now. To an extent I suppose you could say we'd levelled up and the change is a natural part of being an adult.

On reflection, what hit me quite hard was how much I took Jen for granted. Not in a malicious or otherwise nasty way, you understand, but in a 'she'll always be around' way. Despite being painfully aware of our mortality, it shook me to my core to think there was even the slightest possibility Jen might not live out her natural lifespan and, perhaps of greater impact, that she would die before me. That wasn't my plan at all. I'm supposed to die first! Saving my family from home invaders. Or rescuing a puppy from a fire. Hell, I'd settle for keeling over from a heart attack. As long as it's me who goes first.

So our life outlook changed dramatically. Particularly as Jen's cancer has a raised probability of coming back - the trouble with cancer cells is they're really very small, can travel around the body undetected and lodge somewhere, dormant, then suddenly reactivate. Science hasn't figured out quite how or why they do this...or perhaps it has but not in words I understand, but it's definitely something they do.

They also tend to be more resilient the second time around and the treatments used to defeat the first onslaught are no longer as effective, if at all. Of course, there's also the very real possibility that the treatment itself can cause cancer. You remember that from the consent forms, right? While we choose not to live our lives in constant fear of a recurrence, we're still realistic enough to recognise it as a possibility.

Work seemed to lack tangible meaning or fulfilment. The 'money trudge to the grave' didn't hold the same importance anymore, which is why we decided to make the most of life. Pulling ourselves out of the rut we'd created in our lives wasn't easy. Money we'd ring fenced to pay off our mortgage was repurposed to buy a motorhome - a good sized one which would be a substitute for the little place in Spain we'd always wanted.

We're renting out our home to keep the mortgage serviced and bring in a modest monthly income - enough to fuel our journey. We're launching ourselves into a series of adventures starting with four weeks in the Caribbean, then around mainland Europe - travelling first down the Spanish coast, then to who knows where!

It was scary when we first started and it took a lot of kindness, love and support from family and friends - especially our parents.  But when you've been through this journey and you're coming out the other side, you begin to see things that would previously have stopped you in your tracks...as trivial.

We haven't thrown caution to the wind, but we certainly take risks financially that we'd never have even considered pre-diagnosis. We're still figuring things out - the treatment is close enough to be a very painful memory - but we're making steady progress towards new frontiers and milestones on a regular basis.

The thing is, despite the fear of change, it's very difficult to go back to 'normal'. Impossible in fact. So don't be freaked out if you or your partner feel differently about the direction your life is going in. It's completely normal. I would argue almost inevitable. And inactivity through fear is far worse than changing things and messing up now and then, surely? At least, we think we'd regret not doing something more than we'd regret doing something.

Despite all that, we are still driven through fear, somewhat. After all, we're taking time out of our normal lives to do something completely out of the ordinary, through fear that we don't get to experience these things together later in life.

That's not to say you should go on a credit card splurge and end up in debtor's prison, but you can definitely make some positive changes in your lives. What you can realistically do will relate directly to your life circumstances, but even if you don't have immediate resources, there's literally loads of things to do and experience for little to no cost.

When you're ready, take more time to make good memories, spend time with the people you care about and who care about you.

Take up new and interesting hobbies - buy that quad copter drone you always dreamed of, write that book, start a business, take up knitting, bonsais, kite surfing, water colours, rambling, ice skating, gurning, gymnastics, jogging, pottery, sky diving, walk ball, volunteering, climate activism, line dancing...anything!

Take some carefully calculated risks. Live life! Do it! Compile a list of things you'd love to do and get out there! Life's short and you're a long time dead.

No matter your life circumstances, you can and should use this journey as a wake up call that launches you on to better things. To greatness and positive change.

Well, why are you still reading!? Grab life by the bollocks and hold on tight! Go! GO!

Dom and Jen.

xx

Resources

Many of the following resources come with a massive range of resources in their own right. It's very easy to be distracted and find yourself going down informational rabbit holes - I've spent hours upon hours doing that. Try to focus on the thing you need at the time and not become distracted. Otherwise, before you know it, you'll find yourself reading about survival projections for childhood Non-Hodgkin Lymphoma since the 60s. Oddly specific, I know, because that's exactly where I found myself in the early hours when I was actually looking for support groups for partners.

General Information and Support
www.macmillan.org.uk
www.cancerresearchuk.org
breastcancernow.org
www.breastcancercare.org.uk
www.nhs.uk/conditions/breast-cancer
www.maggiescentres.org
www.againstbreastcancer.org.uk
www.cancer.gov *
www.breastcancer.org **
Support for Carers
www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx
www.carersuk.org

Counselling
www.lpft.nhs.uk/steps2change

Note: You can self refer for counseling nowadays so you don't need to go through the rigmarole of seeing a doctor if you feel you need emotional or psychological support.

www.bacp.co.uk

Prognosis calculator ***
https://breast.predict.nhs.uk

Clinical Trials

Explains the clinical trial process:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/clinical-trials

Lists of clinical trials for breast cancer:

https://www.icr.ac.uk/our-research/research-divisions/division-of-clinical-studies/icr-ctsu-breast-and-rare-cancers/research-projects/breast-cancer-clinical-trials
https://www.christie.nhs.uk/professionals/research/research-themes/breast-cancer-research-team/clinical-trials/find-a-breast-cancer-clinical-trial/clinical-trials-for-metastaticsecondary-breast-cancer/

Find clinical trials:

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial

* American resource run by the National Cancer Institute. Responsible for many pioneering works.

** American resource.

*** Use with caution - works on statistics and results do not necessarily reflect your partner's situation!

Glossary

Ablation (Ovary)

- preventing the ovaries from producing hormones via chemicals or surgery.

Acute

- sudden onset, new, sometimes short-lived. For example, stubbing a toe results in acute pain.

Adjuvant

- treatment (such as chemotherapy or radiotherapy) that takes place after the 'main' treatment (surgery); usually aimed at destroying any stray malignant cells.

Anaemia

- lack of haemoglobin in red blood cells, caused by some types of chemotherapy.

Anti emetic

- anti-nausea or anti sickness medicine. Often used in conjunction with chemotherapy to prevent vomiting.

Anti histamine

- anti allergy medicine. Often used in conjunction with cancer treatments to prevent allergic reaction.

Axillary dissection
- surgical removal of armpit lymph nodes.
Benign (tumour)
- (usually) not harmful, non spreading.
Bilateral (mastectomy)
- the surgical removal of both breasts.
Biopsy (also Core Biopsy)

- a sample of body tissue taken for testing with a view to reach a diagnosis.

Cannula

- a thin plastic tube inserted into the vein with openings to allow for the administration of liquid medicines.

Catheter

- a tube with a bag; usually inserted into the urethra to collect urine; used for the bed ridden and during surgery.

Chemotherapy

- medicine used to destroy, shrink or prevent growth/spread of a tumour or tumours; many combinations of drugs exist and and no two person's treatments are the same.

Chronic

- long lasting, usually used in relation to pan and illness. For example a slipped disc can result in chronic pain.

Cyst

- a pocket or sac of body tissue, usually filled with fluid. They can form anywhere on the body and are usually benign.

De novo

- the first instance or occurrence (of cancer).

Diagnosis

- the conclusion reached following examination and testing.

Differentiation

- how cancer cells compare to normal cells, ranging from well differentiated (almost normal) through moderately (less normal), to poorly (abnormal and usually fast growing).

Drain

- a surgical rubber tube which collects fluids from surgical sites on the body, preventing unwanted fluid build up.

Dressing

- a bandage or plaster used to cover open skin areas such as incision sites, wounds and sores.

Ductal
- of the milk ducts of the breast.
Echocardiogram (EC)

- ultrasound used to check heart function before, during and after treatment.

Elective

- in the context of surgery, something which is requested by the patient but isn't necessarily medically necessary. Elective mastectomy (breast removal) as a means of cancer prevention is a good example.

Electrocardiogram (ECG)

- measures the heart's electrical activity to ensure correct functioning.

Encapsulation

- the result of scar tissue forming around, say, an implant. Can occur, for example, following radiotherapy on a reconstructed breast.

Flush (drips)

- a saline solution used before, between and after chemotherapy treatments, administered via IV drip.

Grade (tumour)

- the way cells appear and grow and thus spread in a tumour - usually from 1 to 3 - though some cancers have their own gradings and more than one grading system exists.

Hormone Therapy

- a therapy used in cancer treatment which aims to shrink tumour(s) and/or prevent growth/spread.

Immune (compromised) (suppressed)

- of the immune system (where the immune system is compromised - be it by medicine or illness) (suppression of the immune system is a side effect of some cancer therapies)

Implant

- a foreign object inserted into the body as a form of treatment, either to deliver medicine or as part of, say, breast reconstruction.

Infusion

- medicine delivered via IV drip - usually gravity fed as opposed to pressurised or plunger driven.

Intravenous (IV)

- of/into the veins. Thus, IV Antibiotics are antibiotics which are injected as opposed to, say, swallowed.

Invasive

- going into the body, either through treatment or spread. Thus, certain treatments can be invasive but some cancers can also be.

Lumpectomy (aka Partial Mastectomy)

- the removal of a tumour from the breast trying to conserve as much healthy tissue as possible.

Lymph Node

- a small gland (of many (the lymphatic system)) used to transport fluid and fight infection; part of the immune system.

Lymphoedema

- swelling caused by a build up of lymphatic fluid in the arm, hand or breast following lymph node removal or radiotherapy.

Magnetic Resonance Imaging (MRI)

- a technique of imaging using magnetic resonance to view the inside of the body via detailed cross section.

Malignant (tumour)
- (usually) harmful, spreading.
Mammogram

- an x-ray of the breast used to detect tumours and pre-tumour conditions such as calcium build up.

Mastectomy
- the removal of a breast.
Metastasis (Metastatic, Metastasise)

- the word used to describe the spread of a tumour.

Neo adjuvant

- treatment (such as chemotherapy or radiotherapy) that takes place before the 'main' treatment (surgery); usually aimed at shrinking tumour
and/or preventing spread/growth.

Neutropenia

- low white blood cell count, usually caused by some chemotherapy, which compromises the immune system.

Oncology/Oncologist

- the study of cancer to understand, diagnose, treat and prevent/a person who practises oncology.

Osteonecrosis

- bone death caused by blood flow loss. In this context: of the jaw following certain types of dental work too soon before or after administration of Zoledronic Acid.

Osteoporosis

- reduction in bone density. Can be caused by some hormone therapies.

Pathology

- the study of disease; in this context, a vital component of diagnosis.

Peripheral neuropathy

- tingling and nerve irritation/pain of the hands and feet caused by damage from some chemotherapy drugs.

Primary (cancer)

- the first tumour. Other tumours can grow from this tumour if it is malignant.

Prognosis

- general outlook in terms of health; survivability.

Radiology/Radiologist

- the study of radiation, particularly to image and treat illness/a person who practises radiology.

Radiotherapy

- radioactive therapy aimed at shrinking tumour and/or preventing spread/growth

Reconstruction

- of the breast, (usually) involving implants and/or tissue from non breast areas of the body, such as the tummy or back.

Secondary (cancer)

- additional tumour(s) which have grown from the primary tumour. Can appear anywhere in the body. Secondary breast tumours are still referred to as breast cancer even if they appear in, say, the bone.

Seroma

- build up of fluid in sites where bodily tissue has been surgically removed. Can be drained manually by the breast care team or naturally reabsorbed by the body as part of the normal healing process.

Stage (cancer)

- a means of describing the extent of a tumour and its spread within the body - usually 1 to 4 for breast tumours, though multiple systems exist for different cancers.

Steroids

- medicine used to help prevent unwanted reactions to certain treatments, especially chemotherapy.

Subcutaneous (injection)
- injection into the fat under the skin.
Suture (stitch)

- a thread, (often) self dissolving, used to close a wound.

Systemic
- in this context: of the whole body.
Targeted (therapy)

- a series of drugs which interact with the cellular mechanisms of cancer cells, preventing growth and spread.

Tissue

- in this context, usually means of the body, for example, flesh, muscle or skin.

Transfusion

- usually relating to blood or other venous fluids replaced via infusion (drip).

Ultrasound (scan)

- uses ultra-high frequency sound waves to produce images of the inside of the body. In our context, often used to image heart function.

X-Ray

- images taken of the inside of the body, particularly bones and lungs, by firing safe doses of radiation at the target area.