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. Athough 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.
Subject Start Date End Date Start Time End Time
Echo appointment 10/05/2018 10/05/2018 14:15:00 15:15:00
Last methotrexate 11/05/2018 11/05/2018 08:00:00 09:00:00
Oncologist 11/05/2018 11/05/2018 09:00:00 10:00:00
Hygenist 15/05/2018 15/05/2018 12:20:00 13:20:00
Bone scan 16/05/2018 16/05/2018 12:15:00 13:15:00
Collect letter from breast clinic 16/05/2018 16/05/2018 13:00:00 14:00:00
Oncology consent app 18/05/2018 18/05/2018 10:45:00 11:45:00
CT scan 19/05/2018 19/05/2018 09:30:00 10:30:00
Dentist 22/05/2018 22/05/2018 10:10:00 11:10:00
New patient talk 22/05/2018 22/05/2018 16:30:00 17:30:00
Chemo 1 24/05/2018 24/05/2018 10:00:00 11:00:00
Insurance docs from Oncologist 24/05/2018 24/05/2018 09:00:00 10:00:00
Hormone jab 1 24/05/2018 24/05/2018 08:00:00 09:00:00
Scan Results 24/05/2018 24/05/2018 08:00:00 09:00:00
Injection 25/05/2018 25/05/2018 07:00:00 08:00:00
Steroid Tablet 25/05/2018 25/05/2018 14:00:00 15:00:00
Injection 26/05/2018 26/05/2018 07:00:00 08:00:00
Injection 27/05/2018 27/05/2018 07:00:00 08:00:00
Injection 28/05/2018 28/05/2018 07:00:00 08:00:00
Injection 29/05/2018 29/05/2018 07:00:00 08:00:00
Doctor 30/05/2018 30/05/2018 15:20:00 16:20:00
Flucanzole 1 daily tab for 7 30/05/2018 05/06/2018 09:00:00 10:00:00
Injection 30/05/2018 30/05/2018 07:00:00 08:00:00
Ciprofloxacin 1 tab twice a day 31/05/2018 31/05/2018 09:00:00 10:00:00
Look good feel good 31/05/2018 31/05/2018 10:00:00 11:00:00
Phone call check up 31/05/2018 31/05/2018 13:00:00 14:00:00
Ciprofloxacin 1 tab twice a day 02/06/2018 02/06/2018 09:00:00 10:00:00
Ciprofloxacin 1 tab twice a day 03/06/2018 03/06/2018 09:00:00 10:00:00
Ciprofloxacin 1 tab twice a day 04/06/2018 04/06/2018 09:00:00 10:00:00
Ciprofloxacin 1 tab twice a day 05/06/2018 05/06/2018 09:00:00 10:00:00
Ciprofloxacin 1 tab twice a day 06/06/2018 06/06/2018 09:00:00 10:00:00
Oncologist 08/06/2018 08/06/2018 11:30:00 12:30:00
Phone Breast Clinic 11/06/2018 11/06/2018 15:00:00 16:00:00
Dexamethasone 2pm 13/06/2018 13/06/2018 14:00:00 15:00:00
Dexamethasone 9am 13/06/2018 13/06/2018 09:00:00 10:00:00
Chemo 2 14/06/2018 14/06/2018 10:30:00 11:30:00
Constipation tab 14/06/2018 14/06/2018 20:30:00 21:30:00
Dexamethasone 9am 14/06/2018 14/06/2018 09:00:00 10:00:00
Headstrong 14/06/2018 14/06/2018 09:30:00 10:30:00
Prescription in take home bag 14/06/2018 14/06/2018 11:00:00 12:00:00
Zoladex. Check prescribed 14/06/2018 14/06/2018 10:30:00 11:30:00
Injection 15/06/2018 21/06/2018 08:00:00 08:00:00
Flucanzole 1 daily tab for 7 18/06/2018 24/06/2018 08:00:00 09:00:00
Phone Breast Clinic re Wig 18/06/2018 18/06/2018 11:00:00 12:00:00
Ciprofloxacin 1 tab twice a day 20/06/2018 26/06/2018 11:00:00 12:00:00
Macmillan Look Good Feel Good 21/06/2018 21/06/2018 10:00:00 12:00:00
Nurse app Diane 28/06/2018 28/06/2018 11:30:00 12:30:00
New sharps box 29/06/2018 29/06/2018 10:30:00 11:30:00
Oncologist blood 29/06/2018 29/06/2018 10:45:00 11:45:00
Orthotics wig 29/06/2018 29/06/2018 13:00:00 14:00:00
Collect prescription 04/07/2018 04/07/2018 14:00:00 15:00:00
Phone re prescription 04/07/2018 04/07/2018 10:00:00 11:00:00
Start constipation meds 04/07/2018 04/07/2018 08:00:00 09:00:00
Steroid Tablet 04/07/2018 04/07/2018 09:00:00 10:00:00
Steroid Tablet 04/07/2018 04/07/2018 14:00:00 15:00:00
Chemo 3 (NHS 70 years) 05/07/2018 05/07/2018 10:00:00 11:00:00
New sharps, zoladex. Long flush. 05/07/2018 05/07/2018 10:30:00 11:30:00
Steroid Tablet 05/07/2018 05/07/2018 09:00:00 10:00:00
Flucanzole 1 daily tab for 7 09/07/2018 15/07/2018 10:00:00 11:00:00
Ciprofloxacin 1 tab twice a day 11/07/2018 17/07/2018 12:00:00 13:00:00
Phone Key Worker 11/07/2018 11/07/2018 10:00:00 11:00:00
Blood test 12/07/2018 12/07/2018 12:00:00 13:00:00
Collect Jens prescription 12/07/2018 12/07/2018 10:15:00 11:15:00
Dr Appt for EAR 16/07/2018 16/07/2018 11:40:00 12:40:00
Prescription 16/07/2018 16/07/2018 11:00:00 12:00:00
Blood test 20/07/2018 20/07/2018 09:00:00 10:00:00
Oncologist app 20/07/2018 20/07/2018 11:45:00 12:45:00
Dr Appt for EAR 23/07/2018 23/07/2018 11:40:00 12:40:00
Breast Afternoon 24/07/2018 24/07/2018 12:00:00 13:00:00
Steroids 25/07/2018 25/07/2018 09:00:00 10:00:00
Steroids 25/07/2018 25/07/2018 14:00:00 15:00:00
Chemo 4 26/07/2018 26/07/2018 09:30:00 10:30:00
Steroids 26/07/2018 26/07/2018 09:00:00 10:00:00
Steroid Tablet 27/07/2018 27/07/2018 09:00:00 10:00:00
Flucanzole 1 daily tab for 7 30/07/2018 30/07/2018 09:00:00 10:00:00
Blood test SMG 01/08/2018 01/08/2018 08:45:00 09:45:00
Ciprofloxacin 1 tab twice a day 01/08/2018 01/08/2018 09:00:00 10:00:00
Phone Key Worker 01/08/2018 01/08/2018 11:00:00 12:00:00
Nurse and doc 02/08/2018 02/08/2018 11:50:00 12:50:00
Breast ultrasound 06/08/2018 06/08/2018 10:30:00 11:30:00
Echocardiogram 06/08/2018 06/08/2018 08:15:00 09:15:00
Blood pressure Dr surgery 08/08/2018 08/08/2018 17:20:00 18:20:00
Immodium Adcal constipation 10/08/2018 10/08/2018 08:30:00 09:30:00
Oncologist 10/08/2018 10/08/2018 11:45:00 12:45:00
Chemo 5 16/08/2018 16/08/2018 10:30:00 11:30:00
Surgeon 30/08/2018 30/08/2018 09:00:00 10:00:00
Oncologist Bloods 31/08/2018 31/08/2018 12:15:00 13:15:00
Collect prescription 04/09/2018 04/09/2018 08:00:00 09:00:00
Cottpn wool buds 04/09/2018 04/09/2018 13:10:00 14:10:00
Breast cancer support group 05/09/2018 05/09/2018 12:00:00 13:00:00
Order meds 05/09/2018 05/09/2018 19:30:00 20:30:00
Collect Jens prescription 12/09/2018 12/09/2018 10:00:00 11:00:00
Chemo 6 13/09/2018 13/09/2018 12:00:00 13:00:00
Surgeon 19/09/2018 19/09/2018 16:00:00 17:00:00
Echocardiogram 25/09/2018 25/09/2018 08:15:00 09:15:00
Oncologist blood 28/09/2018 28/09/2018 11:30:00 12:30:00
Hospital admission 30/09/2018 30/09/2018 06:00:00 07:00:00
Jen’s drugs 02/10/2018 03/10/2018 00:00:00 00:00:00
Dr if pessary not good 03/10/2018 03/10/2018 09:00:00 10:00:00
Phone breast nurse re psych app 03/10/2018 03/10/2018 08:00:00 09:00:00
Phone Key Worker and dentist 03/10/2018 03/10/2018 10:00:00 11:00:00
Chemo 7 04/10/2018 04/10/2018 10:30:00 11:30:00
Phone breast clinic re surgery 08/10/2018 08/10/2018 10:00:00 11:00:00
Jens prescription 09/10/2018 09/10/2018 10:30:00 11:30:00
Prescription ready? 10/10/2018 10/10/2018 08:00:00 09:00:00
Day 8 11/10/2018 11/10/2018 12:00:00 13:00:00
Phone Dr app 12/10/2018 12/10/2018 08:00:00 09:00:00
Phone KW re herceptin/hormone 16/10/2018 16/10/2018 11:00:00 12:00:00
Phone rheumatology 16/10/2018 16/10/2018 11:15:00 12:15:00
Dr has put order in for Goserlin 16/10/2018 16/10/2018 10:00:00 11:00:00
Psychological ass 17/10/2018 17/10/2018 15:00:00 16:00:00
Phone Dr to make app 23/10/2018 23/10/2018 14:30:00 15:30:00
Surgeon reconstruction app 24/10/2018 24/10/2018 09:00:00 10:00:00
HERCEPTIN Right leg 29/10/2018 29/10/2018 15:00:00 16:00:00
Dr for goserlin numbing cream? 30/10/2018 30/10/2018 09:30:00 10:30:00
Collect prescription and wee pot 02/11/2018 02/11/2018 14:05:00 15:05:00
HORMONE inj 02/11/2018 02/11/2018 14:00:00 15:00:00
Numbing cream ON 02/11/2018 02/11/2018 12:30:00 13:30:00
Pre Assessment surgery 07/11/2018 07/11/2018 12:00:00 13:00:00
5wks post chemo 08/11/2018 08/11/2018 08:00:00 09:00:00
Herceptin booked? 13/11/2018 13/11/2018 08:00:00 09:00:00
6wks past chemo 15/11/2018 15/11/2018 08:00:00 09:00:00
Jen Bra 16/11/2018 16/11/2018 09:00:00 10:00:00
Bra hunt 20/11/2018 20/11/2018 11:00:00 12:00:00
Herceptin due LEFT LEG 20/11/2018 20/11/2018 15:00:00 16:00:00
Hospital MRSA etc 24/11/2018 24/11/2018 10:00:00 11:00:00
Cream on for injection 26/11/2018 26/11/2018 09:00:00 10:00:00
Hormone inj 26/11/2018 26/11/2018 10:30:00 11:30:00
Surgery 27/11/2018 27/11/2018 07:30:00 08:30:00
Antibiotic 01/12/2018 01/12/2018 08:00:00 09:00:00
Antibiotic 01/12/2018 01/12/2018 14:00:00 15:00:00
Antibiotic 01/12/2018 01/12/2018 20:00:00 21:00:00
Drain output 01/12/2018 01/12/2018 12:00:00 13:00:00
Antibiotic 02/12/2018 02/12/2018 08:00:00 09:00:00
Antibiotic 02/12/2018 02/12/2018 14:00:00 15:00:00
Antibiotic 02/12/2018 02/12/2018 20:00:00 21:00:00
Drain output 02/12/2018 02/12/2018 12:00:00 13:00:00
Antibiotic 03/12/2018 03/12/2018 08:00:00 09:00:00
Antibiotic 03/12/2018 03/12/2018 14:00:00 15:00:00
Antibiotic 03/12/2018 03/12/2018 20:00:00 21:00:00
Drain output 03/12/2018 03/12/2018 12:00:00 13:00:00
Start evening primrose oil 03/12/2018 03/12/2018 08:00:00 09:00:00
1wk post op 04/12/2018 04/12/2018 08:00:00 09:00:00
Antibiotic 04/12/2018 04/12/2018 08:00:00 09:00:00
Antibiotic 04/12/2018 04/12/2018 14:00:00 15:00:00
Antibiotic 04/12/2018 04/12/2018 20:00:00 21:00:00
Drain output 04/12/2018 04/12/2018 12:00:00 13:00:00
Antibiotic 05/12/2018 05/12/2018 08:00:00 09:00:00
Antibiotic 05/12/2018 05/12/2018 14:00:00 15:00:00
Antibiotic 05/12/2018 05/12/2018 20:00:00 21:00:00
Antibiotic 06/12/2018 06/12/2018 08:00:00 09:00:00
Antibiotic 06/12/2018 06/12/2018 14:00:00 15:00:00
Antibiotic 06/12/2018 06/12/2018 20:00:00 21:00:00
Antibiotic 07/12/2018 07/12/2018 08:00:00 09:00:00
Antibiotic 07/12/2018 07/12/2018 14:00:00 15:00:00
Antibiotic 07/12/2018 07/12/2018 20:00:00 21:00:00
Herceptin chase 07/12/2018 07/12/2018 10:30:00 11:30:00
Antibiotic 08/12/2018 08/12/2018 08:00:00 09:00:00
Antibiotic 08/12/2018 08/12/2018 14:00:00 15:00:00
Antibiotic 08/12/2018 08/12/2018 20:00:00 21:00:00
Antibiotic 09/12/2018 09/12/2018 08:00:00 09:00:00
Antibiotic 09/12/2018 09/12/2018 14:00:00 15:00:00
Antibiotic 09/12/2018 09/12/2018 20:00:00 21:00:00
Antibiotic 10/12/2018 10/12/2018 08:00:00 09:00:00
Antibiotic 10/12/2018 10/12/2018 14:00:00 15:00:00
Antibiotic 10/12/2018 10/12/2018 20:00:00 21:00:00
Drain out Surgeon 10/12/2018 10/12/2018 10:00:00 11:00:00
2wk post op 11/12/2018 11/12/2018 08:00:00 09:00:00
Antibiotic 11/12/2018 11/12/2018 08:00:00 09:00:00
Antibiotic 11/12/2018 11/12/2018 14:00:00 15:00:00
Antibiotic 11/12/2018 11/12/2018 20:00:00 21:00:00
Herceptin due RIGHT LEG 11/12/2018 11/12/2018 11:00:00 12:00:00
Stockings night only 11/12/2018 11/12/2018 08:00:00 09:00:00
Antibiotic 12/12/2018 12/12/2018 08:00:00 09:00:00
Antibiotic 12/12/2018 12/12/2018 14:00:00 15:00:00
Antibiotic 12/12/2018 12/12/2018 20:00:00 21:00:00
Phone doctors 12/12/2018 12/12/2018 07:55:00 08:55:00
Antibiotic 13/12/2018 13/12/2018 08:00:00 09:00:00
Antibiotic 13/12/2018 13/12/2018 14:00:00 15:00:00
Antibiotic 13/12/2018 13/12/2018 20:00:00 21:00:00
3wk post op 18/12/2018 18/12/2018 08:00:00 09:00:00
Surgeon 19/12/2018 19/12/2018 10:15:00 11:15:00
Dressings changed 24/12/2018 24/12/2018 19:00:00 20:00:00
Hormone cream on 24/12/2018 24/12/2018 09:30:00 10:30:00
Hormone inj left side 24/12/2018 24/12/2018 11:10:00 12:10:00
Last night of stockings 24/12/2018 24/12/2018 21:00:00 22:00:00
4wk post op 25/12/2018 25/12/2018 08:00:00 09:00:00
Dressing change 28/12/2018 28/12/2018 21:00:00 22:00:00
Start tamoxifen 29/12/2018 29/12/2018 19:30:00 20:30:00
5wks post op 01/01/2019 01/01/2019 08:00:00 09:00:00
Dressing changed 01/01/2019 01/01/2019 19:00:00 20:00:00
Phone Dr 02/01/2019 02/01/2019 10:30:00 11:30:00
Echocardiogram 04/01/2019 04/01/2019 09:00:00 10:00:00
Oncologist app & bloods 04/01/2019 04/01/2019 10:00:00 11:00:00
Prescription 04/01/2019 04/01/2019 14:30:00 15:30:00
Macmillan chat 1hr 07/01/2019 07/01/2019 14:00:00 15:00:00
Phone macmillan to cancel 07/01/2019 07/01/2019 09:00:00 10:00:00
6wks post op 08/01/2019 08/01/2019 08:00:00 09:00:00
Herceptin due LEFT LEG 08/01/2019 08/01/2019 16:30:00 17:30:00
Breast Physio STAMFORD 11/01/2019 11/01/2019 12:00:00 13:00:00
Collect prescription 11/01/2019 11/01/2019 10:00:00 11:00:00
Zoladronic acid infusion 11/01/2019 11/01/2019 16:00:00 17:00:00
Phone breast cancer care 14/01/2019 14/01/2019 09:00:00 10:00:00
Phone physio unit re app letter 14/01/2019 14/01/2019 09:25:00 10:25:00
Phone radiotherapy unit 14/01/2019 14/01/2019 15:00:00 16:00:00
S’ calling from Someone like me 14/01/2019 14/01/2019 11:00:00 12:00:00
Dressing change 15/01/2019 15/01/2019 15:00:00 16:00:00
Order meds 17/01/2019 17/01/2019 12:30:00 13:30:00
Radiotherapy mapping 17/01/2019 17/01/2019 11:00:00 12:00:00
Hormone cream on 21/01/2019 21/01/2019 09:30:00 10:30:00
Hormone inj right side 21/01/2019 21/01/2019 11:00:00 12:00:00
8wks post surgery 22/01/2019 22/01/2019 08:00:00 09:00:00
Blood test TB at house 22/01/2019 22/01/2019 09:30:00 10:30:00
Physio 25/01/2019 25/01/2019 12:00:00 13:00:00
4 months pessary 26/01/2019 26/01/2019 08:00:00 09:00:00
Surgeon 28/01/2019 28/01/2019 14:15:00 15:15:00
Book dentist app 29/01/2019 29/01/2019 10:00:00 11:00:00
Herceptin 9 ? RIGHT 31/01/2019 31/01/2019 14:00:00 14:30:00
Bra lady fitting 01/02/2019 01/02/2019 09:00:00 10:00:00
Check tamoxifen on repeat 04/02/2019 04/02/2019 11:00:00 12:00:00
10wks post surgery 05/02/2019 05/02/2019 08:00:00 09:00:00
2wks TB test 05/02/2019 05/02/2019 12:00:00 13:00:00
Physio 06/02/2019 06/02/2019 14:30:00 15:30:00
Phone doc change hormone jab 11/02/2019 11/02/2019 08:00:00 09:00:00
Phone macmilan 11/02/2019 11/02/2019 11:00:00 12:00:00
Phone dentist for emergency app 13/02/2019 13/02/2019 08:00:00 09:00:00
Surgeon 15/02/2019 15/02/2019 11:30:00 12:30:00
Rheumatologist 18/02/2019 18/02/2019 10:30:00 11:30:00
Hormone cream on 18/02/2019 18/02/2019 12:00:00 13:00:00
Surgeon 18/02/2019 18/02/2019 08:45:00 09:45:00
12wks post surgery 19/02/2019 19/02/2019 08:00:00 09:00:00
Radiotherapy 1 20/02/2019 20/02/2019 10:30:00 11:30:00
Surgeon 20/02/2019 20/02/2019 08:45:00 09:45:00
Herceptin 10 LEFT 21/02/2019 21/02/2019 09:30:00 10:30:00
Radiotherapy 2 21/02/2019 21/02/2019 14:30:00 15:30:00
Radiotherapy 3 22/02/2019 22/02/2019 12:05:00 13:05:00
Dentist 25/02/2019 25/02/2019 15:30:00 16:30:00
Query hospital app 25/02/2019 25/02/2019 09:00:00 10:00:00
Radiotherapy 4 25/02/2019 25/02/2019 12:05:00 13:05:00
Radiotherapy 5 26/02/2019 26/02/2019 12:15:00 13:15:00
Collect prescription 27/02/2019 27/02/2019 09:30:00 10:30:00
Radiotherapy 6 27/02/2019 27/02/2019 11:20:00 12:20:00
Radiotherapy Review 27/02/2019 27/02/2019 11:40:00 12:40:00
Dressing change 28/02/2019 28/02/2019 13:30:00 14:30:00
PHYSIO Kate Peterborough 28/02/2019 28/02/2019 11:30:00 12:30:00
Radiotherapy 7 28/02/2019 28/02/2019 12:00:00 13:00:00
Key Worker re dentist 01/03/2019 01/03/2019 12:00:00 13:00:00
Radiotherapy 8 01/03/2019 01/03/2019 12:25:00 13:25:00
Phone dentist 04/03/2019 04/03/2019 09:00:00 10:00:00
Radiotherapy 9 04/03/2019 04/03/2019 12:25:00 13:25:00
14wks 05/03/2019 05/03/2019 08:00:00 09:00:00
Radiotherapy 10 05/03/2019 05/03/2019 12:00:00 13:00:00
Counselling app 06/03/2019 06/03/2019 09:00:00 10:00:00
Radiotherapy 11 06/03/2019 06/03/2019 12:25:00 13:25:00
Radiotherapy Review 06/03/2019 06/03/2019 12:00:00 13:00:00
Dentist 07/03/2019 07/03/2019 09:00:00 10:00:00
Dressing change 07/03/2019 07/03/2019 13:30:00 14:30:00
Radiotherapy 12 07/03/2019 07/03/2019 11:55:00 12:55:00
Radiotherapy 13 08/03/2019 08/03/2019 12:10:00 13:10:00
Fit to work form to HR 11/03/2019 11/03/2019 15:00:00 16:00:00
Dr appt 11/03/2019 11/03/2019 08:30:00 09:30:00
Dressing change 11/03/2019 11/03/2019 12:00:00 13:00:00
Radiotherapy 14 11/03/2019 11/03/2019 11:40:00 12:40:00
STARTED AMITRIPTYLINE 10MG 11/03/2019 11/03/2019 08:00:00 09:00:00
15wks 12/03/2019 12/03/2019 08:00:00 09:00:00
LAST RADIOTHERAPY 15!! DOM 12/03/2019 12/03/2019 11:45:00 12:45:00
Herceptin 11 right leg 14/03/2019 14/03/2019 12:30:00 13:30:00
Dressing change 14/03/2019 14/03/2019 11:00:00 12:00:00
AMITRIPTYLINE 20mg 18/03/2019 18/03/2019 18:30:00 19:30:00
Hormone cream on 18/03/2019 18/03/2019 14:30:00 15:30:00
Hormone inj right side 18/03/2019 18/03/2019 16:00:00 17:00:00
16wks post surgery (4 mths) 19/03/2019 19/03/2019 08:00:00 09:00:00
Dressing change 19/03/2019 19/03/2019 14:00:00 15:00:00
17 wks 26/03/2019 26/03/2019 08:00:00 09:00:00
Breast Physio class 26/03/2019 26/03/2019 10:30:00 11:30:00
Radiotherapy skin check 26/03/2019 26/03/2019 12:40:00 13:40:00
HOPE COURSE MACMILLAN 28/03/2019 28/03/2019 13:30:00 16:00:00
18wks 02/04/2019 02/04/2019 08:00:00 09:00:00
HOPE COURSE MACMILLAN 04/04/2019 04/04/2019 13:30:00 16:00:00
Breast cancer support meeting 04/04/2019 04/04/2019 19:00:00 21:00:00
Herceptin 12 left 05/04/2019 05/04/2019 08:00:00 09:00:00
Oncologist app 05/04/2019 05/04/2019 09:45:00 10:45:00
Hormone cream on 08/04/2019 08/04/2019 08:00:00 09:00:00
Hormone inj left side ? 08/04/2019 08/04/2019 08:00:00 09:00:00
19wks 09/04/2019 09/04/2019 08:00:00 09:00:00
HOPE COURSE MACMILLAN 11/04/2019 11/04/2019 13:30:00 16:00:00
Physio 11/04/2019 11/04/2019 11:00:00 12:00:00
Echocardiogram 15/04/2019 15/04/2019 12:00:00 13:00:00
20wks post surgery (5 mths) 16/04/2019 16/04/2019 08:00:00 09:00:00
Zoladex left side 16/04/2019 16/04/2019 15:20:00 16:20:00
HOPE COURSE MACMILLAN 18/04/2019 18/04/2019 13:30:00 16:00:00
6 wks post radio 23/04/2019 23/04/2019 08:00:00 09:00:00
Herceptin 13? 25/04/2019 25/04/2019 08:00:00 09:00:00
HOPE COURSE MACMILLAN 25/04/2019 25/04/2019 13:30:00 16:00:00
HOPE COURSE MACMILLAN 02/05/2019 02/05/2019 13:30:00 16:00:00
Breast cancer support meeting 02/05/2019 02/05/2019 19:00:00 21:00:00
1year diagnosis 03/05/2019 03/05/2019 08:00:00 09:00:00
8wks post radio 07/05/2019 07/05/2019 08:00:00 09:00:00
Dentist 13/05/2019 13/05/2019 11:00:00 12:00:00
6mths post surgery 14/05/2019 14/05/2019 08:00:00 09:00:00
Herceptin 14 ? 16/05/2019 16/05/2019 08:00:00 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.