[CANCER] A rather exhausted update

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!

Opinion Minute

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 РBex 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!


[CANCER] Moving to a new drug #Paclitaxel #BreastCancer

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.

Friday’s Treatment

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.