Like many, I’m looking forward to time moving forward, and hopefully emerging (once vaccinated) into some kind of resemblances of a more liveable life. Having been taught that time is a social construct, I don’t expect things to change on the stroke of midnight however (it’s also one of the reasons I’ve never done New Year’s Resolutions – also, they are set up to fail, and if I want to try something new, I’ll do it when I’m ready, not when the clock dictates). Maybe that’s why I was pretty relaxed about Christmas this year (as 2/3 previous year’s Christmas have been messed up by cancer, so…)

A Cancer Update

I last blogged maybe 3 weeks ago (though feels like months ago).

This week’s fun

This Tuesday I headed to the Laurel Suite to have treatment number 18, but had to report that puffiness and breathlessness in my body had been getting worse since around Christmas Eve (though already noticeable for a few weeks), although my face had not swollen (like in July). Although I chucked my scales out years ago for the sake of my mental health, I get weighed every time so the right dosage can be dispensed… and along with going up around 1kg per week for previous 5-6 weeks, this time 5kg in 2 weeks … I don’t do the whole Christmas ‘eat yourself sick’ so it’s fluid weight that is going on. Again, after conversations with the acute oncology nurse, and an on-call oncologist (both via phone), with concerns that it could be a blood clot (though unlikely because of blood thinners), or a tumour growth/obstruction, I was sent to ACU to await more tests. And again, they can’t use my port, so, once I’d had an x-ray (to see what pleural effusion is up to) and they decided I needed a CT scan, after 6 attempts, cannula got in (yes, I cried, though once in, much less painful that previous ones – they’ve decided they can use my left arm now). Thankfully the CT scan ended up being the last one of the day, and the radiographer wanted to get home, so wrote the report up swiftly. I was in the Laurel Suite 11-2.30, then on the ACU til gone 9pm – very tired:


View this post on Instagram


A post shared by Bex Lewis (@drbexl)

The results came back as not a clot, and not a tumour growth – so – and this is basically the scan I was due to have on 9th has now been done – I guess we can say I’m a ‘stable mable’ (which I should probably be a lot more excited about than I am – as one of my nurses said, I’ve had so many side effect problems, I don’t really believe it). It is thought that I now have lymphedema in my right arm (whereas my left arm – where all lymph nodes removed – has recovered from this entirely), and across my chest – quite uncomfortable, but need to work on massaging the fluid back into where it’s supposed to be. I emailed my Secondary Breast Care Nurse (SBCN) yesterday to update, as she can liaise with my oncologist (who hopefully I will speak to soon), and she has now already referred me to the lymphedema service!

What’s next?

The decision is to abandon the 18th paclitaxel – officially I guess it still sits on the list of drugs I could return to, but it’s given my body a complete hammering. I will go back onto the oncology ward on Monday and consent to starting capecitabine (usually have to accept that death is a possible side effect of the drugs), have bloods taken, chat to pharmacist, then be sent home with tablet chemo. Should my body be OK with the drug (and I’ve had a DYPD test, which identifies those with terrible responses, and mine are fine), then I will take it for 2 weeks, have a week off the tablets, then go in for another blood test, and continue the routine every 3 weeks, with denosumab every 6 weeks. Looking online the length of time people get can be a few weeks, to many years, so I guess we wait and see. Side-effects are also ‘wait and see’, though fatigue, hand and foot syndrome, and stomach issues sound highly common – woo hoo…

Yesterday, I also joined my ‘new’ friend Jo’s funeral online … another friend Jo has just written on her anger around this for METUPUK.

Some things to be thankful for

I’m sure I’ll think of more and sneak back to add to the list… for now working from my diary, which has a load of things in it that DIDN’T happen, as for many… and of course throughout Andrew and Jane have been core to my bubble of support locally!

And of course thankful for all the entertainment that has been available online via Netflix, Disney +, Amazon Prime – though I would like to get back into theatres and see The Cursed Child, which I had tickets for in Melbourne!

For now, need to (belatedly) get dressed, have a little walk, and prep for the fact that we’re doing midnight at 9pm (we’ll just pretend we’re in Uganda, right?), including a little pre-9pm-zoom with people!

Selfie a Day (made later in the evening, added to post NY Day)

Made with the Selfie a Day app

2021 Please:

Featured Image Photo by Immo Wegmann on Unsplash

One Response

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.