Last time I blogged about cancer, I had been discharged from radiotherapy at the Christie (where I’d had stereotactic radiotherapy). That means in around 4 weeks time I should be due a scan (no appointment arrived yet) to check and see how successful the combined radiotherapy and heavyweight docetaxol has been – there is expected to be ‘scar tissue’ on the bone, but the hope is that there is nothing else visible on my spine, or anywhere else. I will always be Stage 4 cancer, and never be cancer free, but the hope is for shrinkage (or stability), and best case scenario – NEAD (no evidence of active disease).
Thankfully, when I saw my oncologist, we decided that I only needed ONE MORE docetaxol, as it’s the Herceptin and Perjeta I really need (and when I realised the woman next to me in the chemo ward had stopped at one, sometimes I wonder – but it is a powerful drug – so I will follow the recommendations I am given!
My mum managed to come with me to this (final, please, final) docetaxol chemo (although we agreed that she would disappear the day afterwards as just want own head space whilst struggling way through the side effects):
and also, this is the last time (for now at least) that I need to wear the cold cap – as before, it’s worked really well (I think it’s all about the fit), so Nicky gave permission for these v flattering photos of her trying to wedge it on:
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So, hopefully the last #coldcap … thanks @scalpcooling – and the time Nikki took to fit the cap well – I really have not noticed any hair loss with #docetaxol #chemotherapy … Onto Herceptin + Perjeta then denosumab, zoladex, exemastane and probably surgery later in year to remove ovaries.
Also had Poppy and Turkey to one hand … whilst that table in front of me was kept supplied with hot ribena, Costa coffee snacks, and hot chocolate … as well as my iPad (clearing out last few emails before turning it off):
Before my mum disappeared, we had to zoom back into the hospital as I was 7 steroid tablets short … these are designed to manage some of the side effects, though leave one a little ‘manic’ – and they had decided to peter out my steroids over 3 extra days to give the rash/acne a chance to not appear, and also try and manage the nosebleeds:
- Aside from the night before chemo when I got NO sleep at all, the Zopiclone has been sending me off to sleep (honestly, I’ll sleep through as much of this as possible) … but I don’t think the GP will keep chucking that at me, and hopefully once get back to more active ‘fitness’ rather than my Pokewalks, should be tired enough to sleep.
- The nosebleeds tried to start as expected as the steroids wore off, but with use of the Nasceptin cream, soon retreated, which is bliss!
- Indigestion kicked in early … I found some omeprazole from last time, which remember to take before food – has helped… otherwise glugging back the aniseed Gaviscon!
- Metallic taste in mouth – liquorice toffee seems to cut through this!
- Body aches and pains from where the filgrastim (hurrah, last of those yesterday) is regenerating white blood cells, and having said to the radiotherapy oncologist I’ve had very little pain in my back … it’s quite noticeable over last 5-6 days…
- The acne started to flare up again properly a couple of days ago, so I’m keeping at it with the antihistamines, germolene, pliazon *I read in When Breath Becomes Air this is a common side effect of chemo ‘and a sign that it’s working’ (hmmm).
- I have thankfully retained some concentration – enough to read a few books, which is nice. Quite a bit more impatient with stuff that’s ‘not good’ though…. Third jigsaw is part done, not sure when I’ll be back to that, but second one was here:
- I have found it much harder to bounce back energy wise, and the last 2-3 days have been exceedingly black – full of thoughts about why am I bothering to try and do anything, how am I ever going to manage work, got nothing to contribute to the world, it’s going to come back elsewhere, etc. Not untypical reaction to such a harsh drug, but terrifying to be in the middle of. I’ve been proudly saying since my diagnosis in August 2017, I’ve only missed heading out for a walk 3 times … make that 5 now (aside from anything else, stomach is quite unpredictable). Still ticking away a bit there tonight…
- Despite the fatigue, undertook to mow the (small) lawn and (lying down) weed the beds, but that about wiped me out for yesterday, and today, I popped out to a couple of shops, then ended up rather dizzy in Asda 🙁
- Still minor feeling of peripheral neuropathy, but nowhere near as bad as last time, so hoping that will fade away again…
- Eyelashes and eyebrows still holding on (for now) though eyes super-watery…
Tomorrow I am back ‘working from home’ – had a bit of excitement today pre-ordering stuff for bathroom to be redone in August. House is slowly slowly getting there – including getting personalised with some pics. Just want it all done so can curl up with a book, or go out for a hike (walk/swim/cycle) and not think ‘I should be doing x’.
- On 11th June (sod’s law, day had booked things in work, will get there – but late) I’ll have an appointment with Gynaecology to discuss an oophorectomy (ovary removal) – as this is the main source of oestrogen production, and my tumour is fed 8/8 by oestrogen.
- On 17th June I’ll have Herceptin and Perjeta (targeted therapies – or are they chemotherapies… anyway, they are not immunotherapies – I know that much) – which will take about 1.5 hours in the chemo suite. There’s expected to be limited side effects (fatigue, thinning hair, etc) unlike the docetaxol. I’ll have this every 3 weeks for as long as it keeps working (so we pray a long time), adding in denosomub bone strengthener every 6 weeks (injection). So I expect to take my work iPad to these appointments and just hope rest of life gradually fits round!
- On 17th June I’ll also be seeing my oncologist again, presumably to sort the next scans, feedback on the gynae appointment, and any other bits and bobs.
- On 18th June I’ll be back in the GP, back onto the Zoladex injections (hormonal suppression) – and I guess exemestane – which I had to suspend for chemo. I’ll be on this every 28 days until oophorectomy has been done (which am assuming is around Sept-Nov time).
So ‘for the rest of my life’ (however long that is, team is optimistic, but it’s a challenge to live with) I’ll be having hospital appointments minimum of every 3 weeks, and trying to fit everything else around that. Talking to oncologist and nurses about possible travelling, they said it’s possible for 2 of the drugs to be taken (chilled) as injections, and the Perjeta could miss the exceptional appointment. They are very keen on quality of life!!
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.