It was only a couple of weeks ago that I updated everyone as to where we were at on treatment, that I’d had a pleural effusion (fluid on the lungs) identified, though oncologist thinks that it’s the toxicity of the treatment causing breathing issues, rather than the effusion itself .. Still very tired, planned to write this yesterday, but nope … but after watching a Zoom nativity this morning, and a catch up session with the Beyond Choc team (A Truly Nourished Christmas, anyone? : a reminder that we asked ourselves ‘I appreciate myself for…’ ‘… getting out of bed every day despite the brown and smelly nature of much of my life right now’…) … wanted to get the basics out of my head…
I have therefore had a couple more treatments of paclitaxel, although the dose has been reduced by 20% overall each time (and no, that doesn’t mean 20 minutes less in the treatment chair). I will have another treatment tomorrow, a break for Christmas week, and then the 18th planned treatment on 29th December. My skin rash has cleared up on my arms, face still breaking out somewhat (but this face mask helps, along with some prescribed lotion), and breathing has improved. I’ve also had a telephone consult with ENT, who have given me Sterimar to take for a month, alongside the Nasceptin that I already had from chemo 3 years ago! Nose still pretty drippy/bloody, but my voice has stopped sounding ‘stretched’. Peripheral neuropathy is still a problem, but we think not getting worse on this reduced dose – important to try and keep on top of – as impacts on ability to be independent. Pain killers and stomach medications also abound everywhere. So, when the oncologist said that we’d keep going with paclitaxel ’til the toxicity got too much’, that appears to be now (I thought I’d be on it for a year or two, maybe, but apparently it’s unusual to get people who manage more than 24 treatments). As we’re coming off it for the purposes of toxicity, rather than for tumour progression, we can apparently return to it further down the line, when required (erm, joy). We’ll see what/if paclitaxel has done, with my next scan on 9th January.
So on 4th January, I will be starting on capecitabine, a tablet (rather than IV) based chemotherapy (commonly known as ‘cape’). A couple of weeks ago a blood test for DPD was sent off, and apparently came back fine, but we want to try and finish the course of paclitaxel first. I don’t know how I’ll respond to it – both in terms of whether it’s effective in reducing, or at least maintaining, my tumour size, and also what side-effects will decide to make themselves known – sounds like fatigue, stomach issues, mouth ulcers, and sore hands/feet are quite common – but my hair may come back… though I may lose my fingerprints! I’ll go into the oncology ward every 3 weeks for a blood test, and to pick up new tablets. Friends who are/have been on it, say that it’s much more ‘manageable’, but again, how long will it work for even if so … some people say ‘oh, I got 6 months on that’, others, like with the H&P I was on, are 5 years down the line with it.. no one can tell – either before you go on it, or once you’re on it – one scan be amazing (like mine was last November, with NEAD), and the next can be a large tumour (like mine this June/July) … cancer is entirely unpredictable….
And this brings me to something that I’ve been wrestling with over the past few weeks… whether I am fit to return to work, currently obviously my specific job, and in general, any job at all. Obviously, I’ve worked incredibly hard to get where I am, and kept saying ‘can’t die until I’m a professor’ (which is 2 promotions away), but after nearly 6 months off sick, rather than getting better, I’m still struggling to get out of bed, to concentrate, though I’m doing a few bits and pieces that I enjoy. I have half sick pay that runs from mid-January til mid-July, although there’s a possible voluntary severance scheme to consider – which is largely separate from the question of taking ill-health retirement. So, lots of conversations with others who have been through the same turmoil (some managed to return, some left), with some friends and family (off social media), and, obviously, work. If I stayed on the paclitaxel, I think it would be pretty cut and dried that I’m not fit, but it would be good to see how the new drug impacts upon my life/concentration, etc. Obviously, I still feel there are things that I want to stay/contribute to life, but can I do them in my current job (with reasonable adjustments), or will I have to find other ways to still find life’s meaning… If I could sell tears, I’d be very rich…
Alongside all these questions, although everyone of course hopes that I may be an ‘outlier’, and live for 10, 15, 21+ years, the stats are not amazing for metastatic cancer at all (over 10,000 people have died from metastatic cancer this year), with 2-3 years a more typical ‘average’, and possibly not even that good for triple negative cancer. Obviously these are not pleasant thoughts to have to engage with at the age of 45, and talking to the pensions people – sounds like I’d have a great pension if I retired at 67, but if I have to take it now, it’s either a very low amount of money (but allowed to/would need to work), a small but more manageable amount of money (but ‘incapacitated’, not a speck of work allowed), or, if the oncologist reckons that under 12 months is a feasible likelihood, then 5 x the manageable amount + a small lump sum as a tax free lump sum (not enough to quite pay off the mortgage, which even if I did would leave me with nothing to live on, and why would I want to!). This is where thinking about friends – those who went from healthy to dead in a very short space of time AND those who were predicted 6 months and still here 7+ years later … leaves questions about needing to still prepare financially in case one of the ‘lucky ones’ – so many unknowns! How many times have I wished that I had ill-health insurance on my mortgage… though friends/family keep telling me I am not alone in all this!! I keep telling myself I’m thankful that doing up the house is at least done, so hopefully can stay and enjoy being here … mixed with ‘come on the COVID vaccine’ so I can go and see people again!!
Anyway, it’s been nice to be able to get a few (socially distanced) walks in with responsible friends and my bubble family, and do a little bit of video recording – even got round to putting my Christmas tree up! Also, am still keeping the postman busy – not only with my medications, but also some lovely gifts – especially from Beyond Chocolate friends over the past few weeks… lovely firepit to try out, some nibbles, some netflix, and some Tropic goodies!
I’ve still carried on my experimentation most evenings with giving (video) expression to my thoughts for a maximum of 60 seconds (via Tik-Tok) – and the one last night was about misuse of disabled parking spaces:
@drbexlToday’s ##OpinIonMinute (having just watched ##Strictly), about the use of ##Disabled parking spaces. ##BusyLivingWithMets? original sound – Bex Lewis
See all Tik-Toks
Well, no one can say that it’s not an unusual Christmas this year .. COVID has thrown many people’s plans in the air (well, responsible people anyway). I’m not sure I’m fit enough to drive 6+ hours to my parents, and I don’t want to get the train into London/tube/train; I don’t want my parents driving on some of the busiest days of the year either, so hopefully we’ll do Christmas in January again (as we did last year, after I had my oophorectomy). I posted all the Christmas presents I was organised enough to do last month, and I typically do an e-Christmas card on here + a few cards for the neighbours! Been enjoying some simple Advent prompts too..
Thankful to have my bubble family to spend Christmas with – I’m taking a Sicilian chocolate panettone (from A Tavola), some pigs in blankets and a bottle of port … and anything else that may already be in my cupboards, because don’t have another Christmas shopping food slot! My cousin is coming from London, so has already been isolating, will buy a test, and find an empty train carriage to come up here … I’m really looking forward to having some company – and someone who doesn’t mind that I’m not awake for huge chunks of the day!
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.