So, last time I wrote anything, I was getting stressed waiting to find the outcome of the Optima Trial. The results were delayed for a further week – so that was fun!
The results came back – yes – you need to have chemo. Obviously that’s what I was hoping to avoid, but if it’s necessary, then at least I know. The next few months are not going to be fun, but as I have been trying to do throughout the treatment – concentrate on the next appointment, rather than all of them!
I’ve not been searching out too much cancer information, because I know how long it takes to become an expert in something, and I’m not going to become an expert in cancer the way that my medical team are. If I’ve got brain cells, I’ll use them on my own research, thank you! But, it was suggest to check the NHS Predict stats and this is what it gave me for my input:
Treatment, however, is moving towards a more personalised model, as chemo is ‘quite a blunt instrument’, and they are seeing if there are more people that can be spared chemo. That is what the Optima trial is doing. My tumour went off for testing. 50% of us in the trial will be randomised chemo anyway, and the other 50% will be told if it’s helpful based on the tumour testing. It’s a double-blind trial, so neither I nor medical team know whether I’m randomised or tumour tested. The tumour will be tested anyway to check validity of the ones that are used for prognosis.
There are loads of different chemotherapy drugs, and different people can be on different ones, depending on the type/size of cancer, etc. All the drugs are effectively toxic poisons working like weedkiller, but taking out the healthy cells whilst they are at it. The following is the planned schedule of treatments, but it is all dependent on whether I pick up an infection/end up getting hospitalised/white cell count drops too low, as things that could usually be shaken off (such as a cold) could have critical consequences (that was drummed into me – there’s a 24-hour chemo hotline to ring with even the most stupid of questions!):
- 1st December (Suzanne)
- 22nd December (Sarah)
- 12th January (Deidre)
‘Tax’ Paclitaxel (Taxol) *Got my dates wrong for this – updated
- 2nd February (Karen)
- 9th February (Suzanne)
- 16th February (Nicky)
- 23rd February (Deirdre)
- 2nd March (Naomi)
- 9th March (Izzy) (the observant amongst you will notice this is my birthday :-()
- 16th March (Bethan)
- 23rd March (Suzanne)
- 30th March (Good Friday) (Mum, hopefully)
- 16th April for 15 working days (through to 4th May), or a week later … (to 11th May)
- At this stage I also start (probably) 10+ years of Tamoxifen, an oestrogen inhibitor (daily tablet).
I’ll then start to try and find the ‘new normal’ (fatigue and other side effects can continue), and pray that there’s no recurrence!
Thankfully got plenty of friends, family and neighbours looking out for me throughout this time. I was able to drive again around 5 weeks after surgery, but not recommended to drive to the chemotherapy treatments in case of side effects. People always ask about the side effects, but apparently they are very individual – and no one can predict until you start. I’ve seen (in FB groups) people start feeling rotten before they’ve left the hospital, and others who it hits 4 days later, and in very different ways. I’ve managed to speak to work today, and will definitely be on sick-leave for the first week after chemo, and then we’ll play it by ear as to whether I’m back working on my research, or extend sick-leave and watch more Netflix! Whatever, oncologist doesn’t want to go too far away whilst on treatment… so Christmas in Manchester then!
This does mean that any plans will need to be very flexible for visits/trips out, etc. Days 7-14 post-chemo are the days at which my immune system will be most compromised, but at all times, I’ll be looking to limit exposure to infection (but people DO go out for social events, and short daily walks are recommended!). I have left a LARGE bottle of antibac by the door, so if you’re visiting, please be sure that you don’t think you’re ‘coming down with something’, and antibac up!
Meantime, this week has been full of appointments – Monday with the oncologist, yesterday for an echocardiogram (heart check), and today for a pre-portacath check, which takes away the need for multiple attempts to find places to draw blood (it took 2 people + 20+ minutes today to take the 3 phials required pre-op), or input the chemotherapy drugs. Once the bloods had been done, I had to watch a video explaining about the TIVAD (saves on medics time, as they can go off and do something else whilst I’m watching, and just take any questions):
I hadn’t realised that it can be left in ‘forever’ (although that adds in a requirement to come in once every 4 weeks for port-flushing), which does remove that future worry about “I’m clearly going to have more blood tests, etc than other people, and no-ones ever been able to get at my (deep) veins easily, so what happens post-portacath)… so long as people use it!
In the next few days, I also have a ‘Younger Women Together‘ couple of days ‘away’ (we’re quite often the only younger ones on the chemo ward), physio to try and shift the scar tissue that’s now building up post-surgery (but drainage is no longer required!), consenting for the chemo with a whole load more info to take on, and then early Friday the portacath gets fitted, and the chemo starts in the afternoon (once the local anaesthetic has worn off, so I can feel any pain – in the rare case of the chemo drugs ‘leaking’). So that all sounds fun doesn’t it. This weekend I’ll get the ‘chemo box’ out and see what I’ve got, and see if I need any more of these things!
Meantime, I’m keeping myself distracted as I’ve got a deadline on a piece of writing by 30th November – there’s a bit of flexibility on that, but as I dread chemo brain.
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.