On Monday I got to celebrate that whatever was on my spine, was not cancer, so I am clearly #notstage4 cancer, so I remain NED! On returning to hospital on Thursday to have stitches removed, it appears that I have a hermangioma on the spine – most people live with these undiagnosed, they are benign, and rarely require treatment, although the MDT meeting on Monday will discuss it – most likely is that I will have extra CT/MRI scans to keep an eye on it. I’ve not gone back to work since Chemotherapy Round 3 as there’s been so much going on, but am taking the opportunity for some life admin, getting myself out on walks, and kitchen planning… around the many hospital appointments! We’ll see how I deal with this new drug this week, and then make further decisions about working from there.
New Drug: Paclitaxel
Yesterday was officially the halfway point on the chemotherapy section of treatment (bearing in mind that I first visited the GP on 15th August, first appointment at Stepping Hill Hospital 23rd August – when breast cancer started to look like a true possibility, and 30th August, when I was officially diagnosed, to 21st September when surgery occurred and 1st December when chemotherapy commenced). The whole chemotherapy pathway is 18 weeks, for me, that’s been 9 weeks of EC (in treatments every three weeks), and now there is 9 weeks of Paclitaxel (which will require treatment every Friday). In meeting with the oncologist on Wednesday (post bloods, and with my list of questions), he indicated that this drug is typically very well tolerated, and that EC is the hard one!! Here’s the drug lined up, ready to enter my body:
Waiting for a Change in Treatment
I think I may have accepted that waiting for any new treatment is a stress, the unknown. It doesn’t matter how much the logical part of your brain gives all kind of reassurances, the body clearly indicates that it’s unhappy with what’s coming – especially with interruptions to sleep! I’ve managed insomnia for years, but I’m not managing this particularly well… “and that’s OK”! It’s been years since I’ve had a night with no sleep, but Wednesday night brought me that … Thursday night brought 6 hours, with a need to get up at 6.30am to head to The Christie and face THE COLD CAP, as well as another new drug, with unknown side-effects.
Karen was my lift/company on Friday (we are asked not to drive home from treatments). We arrived 7.30am as traffic was super-light, the chemotherapy suite opens at 8am, where I went to fetch my anti-sickness … turns out tablet not required for Paclitaxel, but the appointment booker had booked one anyway! At least we know for next time… We filled in the time til my chemo chair (and more importantly nursing staff) was available at 9am by getting a hot drink, chatting, and getting the next 6 weeks of appointment times from the booker!
My nurse was Lucy this time, chair near the window (lovely sunny day, although became too sunny, so the blinds came down!). The usual questions, checking over the paperwork, that the right drugs were being dispensed, etc. (and the computers that I’d always wondered about on the wall were in use = new system in place). When there was an unusual moment where there was no-one else within my phone vision, I took a photo from my spot across to a typical chemo space (it’s why we’re restricted to one visitor at a time, as the nurse, and the foot reflexologist (wonderful distraction) need to get in/out too!)
I was hooked up to the pump, my port was flushed, then pre-meds of anti-sickness, anti-indigestion, steroids , and anti-histamines were given. Half-an-hour later, the cold-cap was placed on. This is the bit that I require whoever is accompanying me to hold my hands, and take the weight of the conversation, whilst I cope with the head-freezing (we reckon 17 mins til I relaxed as it began to feel like a wet towel). The treatment itself is pretty straightforward – half-hour after the cold-cap is on, the drugs start flushing for an hour, then another flush is added for an hour, which is the continued time I have to keep the cold-cap on for! Here I am capturing the pump nearly getting to 100%.
The anti-histamines (plus fact some of the drugs may have an alcohol element) meant I became quite drowsy – if it wasn’t for the cold cap I probably would have dozed off, but with a massive pipe hanging down your back… ! One of the requirements of chemo is to drink as much water as possible to flush things out, and a lot of the side-effects seem to be lessened if well-hydrated…. although that has the issue of being hooked up to two machines and wanting the toilet… so the last-half-hour was quite a challenge – once the nurse had unhooked me from the pump, and disconnected the pipe to the Paxman cooling machine, the cap has to stay on til it defrosts … so a few strange looks as one walks along with the strange bright-pink jockey-type cap and half a pipe hanging down like a long plait…
Anyway, here’s my face (with Karen) when the cold-cap had defrosted enough and was about to come off my head, and head home!
Swift to Sleep?
We stopped en route home for some lunch (the nausea/dizziness that comes on swiftly with the previous drug, not being present). Exhausted by the time we got home, PJs went on, alarm set, pile of food options piled next to the bed, and expectation of swift sleep … well no!
All I can say is I caught up on last week’s Graham Norton, Casualty (well that was cheerful, with a cancer patient choosing to stop treatment ‘at any cost’), and then 6 episodes of Silent Witness (this week’s was excellent – should win awards), plus a few more levels of Candy Crush, few conversations online. This short fun video basically pretty much sums up the feeling of my head… I think I finally fell asleep about 3am accompanied by Harry Potter on Audible again, woke again around 5.30am, thought that was it – then suddenly it was 12.30pm!
The Day After
So it’s the evening of the ‘day after’, and after spending a couple of hours catching up on a few phone based activities in bed, decided it was time to get up, out and go catch some Pokemon. Unlike the day after EC, when it’s a struggle to walk 1km around the block, I went for nearly 4km (most at a ‘brisk pace’ according to the NHS Active app):
I’m keeping an eye on side-effects, which mostly seem to be a slightly raised temperature, insomnia, indigestion, and aches and pains (mostly shoulders, trunk of the body), the ongoing fatigue, flushed and puffed face, and occasional munchies!! So far, looks like going to be easier to live with than the last drug… (others may have the same drug that I’m having but over-3-hours, every 3 weeks – the side effects are harsher, but there’s less hospital time for the patient – and less resource for the NHS – so I’m grateful to have been offered this). Now we can count down 8 more weeks of treatment, then 2-3 weeks break, then radiotherapy for 3 weeks + tamoxifen tablets start for 10 years.
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.