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.