So, yesterday was my last meeting with the oncologist as tomorrow I start CYCLE 6 of chemo (the last cycle – excited beeps from me)! As I’ve been cold capping, I’ve not been able to wash my hair frequently, and yesterday wasn’t a day for hair-washing – I debated just leaving it like this when I got up (well, you know, we should be celebrating that the cold cap is clearly working [rather than the 20-50% of hair that people expect to lose, I seem to have lost none]:
Before every chemotherapy I’ve had to have blood tests, to check that I’ve enough a white blood cells to fight infection (if I’m worried about neutropenia, I should have been picked up before this, as I have to monitor my temperature frequently, and if I feel rough, call in to the 24-hour chemo line, or an ambulance if necessary)… otherwise putting cytotoxic drugs (yes, chemo is literally poison) in does not happen.
My hair looks, erm, lovely, as I’m waiting for bloods:
This photo was taken before my port refused to work (after 4 successful flushes, it still wouldn’t give blood), and before there were then 4 attempts (the fourth successful, thankfully) to take blood via needle from my arm (this is why I have a port!), leaving a number of bruises, and one rather tearful Bex:
The meeting’s with the oncologist are always rather swift (though I went in 10 mins before my appointment time!). We both cheered the fact that this is cycle 6/6, so only 3 more chemo chair sessions to go! If I’d been on Docetaxol I’d be celebrating my final chemo tomorrow, but I’m not – Paclitaxel is dosed and spread out over 3 weeks!
He wanted to check no new/concerning symptoms, so we can carry on as planned. We also discussed what happens afterwards (he’ll be my oncologist for radiotherapy too, so I’ll await another letter in the post)…
When my port was put in on 1st December, there was discussion as to whether it would stay in longer-term because I’m difficult to get blood from (and almost impossible to cannulate), which would still require me to have it flushed every 4-6 weeks. I wondered about this, but the port has been a little temperamental the last couple of weeks, and twisted a little bit. The oncologist said “why would you want to keep it in, you’ve finished your treatment”, which to me was quite a cheering statement! That’s coming out on 10th April … more local anaesthetic, and another week of bruising.
I’ll need to have bloods taken that morning to ensure I’m not neutropenic. They reckon 10 days is long enough if that’s going to happen, and so – off it goes! Just hope it behaves for the next 3 blood tests/chemo sessions!
Here’s the port, with it’s needle + tube inserted (inserted for bloods, left in for chemo … you can see on this blog post how the port/needle works) … but once it’s out, it should just leave a scar about an inch or so (which compared to all the scars on my left… and I know I’ve shared a lot, but scar pics unlikely – so Cosmopolitan gives an idea)
I’ve now gone into the queue for radiotherapy. They originally said 2-3 weeks after chemo, but 3-4 weeks were mentioned. I guess it’ll be as soon as it is! I’ll get an appointment to get ‘tattoos‘ to identify where I’ll need to have the radiotherapy beams – that’ll take a couple of hours (all being well), and then the following week (although it says not usually starting on a Monday), I’ll have to go in for 15 minutes each day (machinery/enough staff permitting) for 3 weeks to be directed at my chest wall/lymph node area (think he may have said around the throat). I was given a pamphlet to read at my last appointment (largely this content) to ensure I understood, and then to ask any questions. I’m not feeling too worried about radiotherapy – think the actual happening is a bit of a non-event so long as I can lie still and hold my breath for long enough … the fatigue afterwards though is going to be fun, added onto the cumulative fatigue from chemo! At a previous consultation, one of the oncologist’s registrars said around 8 weeks to get over radiotherapy fatigue, whilst the other said that no one knows who is going to have longer-term fatigue until after treatment ends…. I’ve been seeking to keep myself active in between each treatment, even if we’re down to about 5-6,000 steps on a good day now (with frequent rests!).
<edit> Ooo, someone’s posted a video of the set-up before the machine fires live beams for radiotherapy.
There’s apparently something called the ‘oestrogen suppression team’, which just makes me giggle! I will first meet with my GP (not that I ever see the same GP twice!) to be prescribed Tamoxifen (for which I was given a Macmillan print-out), an oestrogen-suppressant (as my cancer is fuelled by that hormone). I thought I was going to be on that for 10 years, but asked about something I’d seen others having – and oh, I’m having that too (oncologist says we deal with one thing at a time… but would quite like to know what to prepare my head for!).
I will be having Zoladex injections alongside the tamoxifen – all I know from the others in cancer groups is don’t look at the needle because apparently it’s massive. Think it gets injected into the stomach at the GP practice – initially monthly, then possibly onto 3 monthly once it’s clear body is coping with it. I’m not sure how long this is for – maybe a couple of years which is when they then declare that the menopause has been successful (hurrah, because chemically induced, it’s supposed to be extra-harsh).
Apparently I’ll then move to Anastrazole: again, I don’t know how long for, so that’ll be early questions for the ‘oestrogen suppression team’!
The other thing that is happening is that I have a referral to a psycho-oncologist at the Christie, who I’m meeting on 3rd April (Dr Tania Hawthorn). It’s apparently common as you come to the end of the merry-go-round of cancer treatments, where you’re seeing medical staff very frequently and able to ask lots of questions, to start to worry more, and there’s a particular fear (especially around scanxiety time) of recurrence which it seems worth talking through how to manage. Non of the medics will ever promise you that a recurrence can’t happen, and they see their job as improving your odds of not getting one. Officially I have been NED since my surgery, and everything else is to blast any stray cancer cells that might have escaped …
Oh, and I’ve also sent off a form to a lifestyle/activity person who’s used to dealing with cancer patients, about how to get back to a useful level of activity and movement from where I am currently…
SO – look out for another photo from my Instagram tomorrow as we tick off another chemo chair session!
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.