• Bekky May

Update - May 2020

As ever, it has been a long time since the last update. For this, I apologise but everytime I sit down to write something, another something crops up rendering what I have written out of date!

So I’m going to try to keep this shortish and to the point, which I am sure is no bad thing.

So we start back in February, where we left off indeed. Things were going pretty smoothly back then - I was having fortnightly chemo which was, we think, helping, and while we were aware the clock continued to tick, I was feeling OK. Then came...

  1. The Back

We went away for a couple of nights in mid-Feb and, I believe, sleeping in a different bed was what started it. Crippling back pain. Initially it was manageable, almost amusing at times (one night I managed to lie down awkwardly on the bed at home and it took quite literally 10 minutes to get back up again. Bekky and I were in hysterics. I was the very epitome of a beached whale).

Me and some of my meds

However, the fun didn’t last and soon the back pain became utterly crippling. By mid-March it was quite a concern and a PET scan (to get a detailed pic of my cancer) revealed two fractured vertebrae, caused by steroids and chemo weakening my bones significantly. Nothing could be done except for me to go very gently and hope the bones healed themselves which, very slowly, they have. I am by no means agile but I am much less crippled than I was - the crutches have been largely dispensed with and I am able to hobble short distances unsupported, although even short distances are still utterly exhausting.

The one-hour journey to and from the scanner was, without doubt, one of the most painful experiences of my life, as was having to lie still for 40 minutes on a hard bed in the scanner. Not a fun day, and a nightmare for my long-suffering wife too.

The local hospice - St Michael's in Hastings - has been amazing through all this and I wouldn't be anywhere near as "good" as I am now without their help over the last few weeks. They provided us with a seat for the bath/shower, crutches, raisers for the sofa and a mighty useful thing attached to the side of the bed to make movement in bed and getting into and out of bed much easier. And then there is a Maxine and a Matt who have both been invaluable - the former being a nurse specialising in palliative pain control, the latter being a physio, both of whom have had to operate by phone at the moment given the pandemic situation. The hospice is a wonderful, amazing thing.

2. The Chemo

In mid-March I went in for chemo as usual, and everything was going smoothly until, when they attached me to my usual dose of Oxaliplatin, I went a funny colour and then had a moderate allergic reaction. Halt the chemo, fill me full of saline, watch me for an hour and then...well...that was that. No more of that regime of chemo. It was the second bad reaction I had had to it in under a year, so the oncologist decided she couldn’t/wouldn’t risk any more. Bloody frustrating as it was, we think, helping.

So it was decided that we would move on to yet another variety of chemo - Lonsurf this time. This all happened around the start of the Covid-19 lockdown which, obviously, made things much more complicated although, thankfully, Lonsurf comes in tablet form meaning we could collect the pills and then I could consume them steadily at home. 5-days of tablets, 2-days off, 5-days of tablets, two weeks off, start again from the top. Or at least that was the plan. However, after about 2 days of the first round, things became very, very difficult. At the time, we put it down to it being chemo and me being sensitive but, as is so often the case, it turns out there was more to it than we thought.

I finished the first round of five days but, before we embarked on round two, my oncologist requested a blood test which revealed my liver was struggling to cope. Halt the chemo once more, up the steroid dose and see if things settled back down. They did, and they didn’t.

3. The Liver

And so we get to the current crux of the matter. My liver and I have had a pretty significant falling out. It turns out that it wasn’t the Lonsurf that was causing problems with my liver function. Instead, a tumour within my liver was (and is) pinching the bile duct leading from the liver to the pancreas meaning my liver is only able to function badly. The increased steroid dose meant that, temporarily at least, liver function improved but within a week it went downhill again so the onc sent me for an MRCP - an MRI scan focussed purely on the liver. That was last Thursday.

Shortly before heading in for the scan, I had a call from said oncologist to tell me to pack an overnight bag as they wanted me to stay in overnight in case they could carry out a short procedure to fit a stent the following day. This I duly did and spent a very unpleasant night in a ward with 5 others, one of whom was profoundly disabled and spent the entire time I was there making the most torturous, awful sounds you can imagine. It was horrific to have to experience, god knows why the poor fellow was there or what he was going through but it was a deeply unpleasant experience.

Anyway, various clever people came to see me the following day and, while they were keen to get on with the procedure, there was no room on the list that day so please could I come back on Tuesday. Meanwhile, go home and “enjoy the weekend”. This I duly tried to do…!

Tuesday was upon us before we knew it but the procedure had to be aborted. Too much left over food in my stomach, I’m afraid, so they couldn’t see what they were doing. The procedure was, in theory, relatively simple. The aim was to fit a stent into my bile duct - this involved being heavily sedated, then a tube with a camera is inserted down my throat and by magic, the clever people fit the stent. They got the camera in, I am told, although I was completely unaware of it but then had to abort. Come back on Thursday, and in the meantime it’s a clear liquid diet to try to move things along in my tum.

But the best laid plans and all that - I had a call from the doctor yesterday to say two things. First, he had had another look at my MRI and concluded that the reason food was stuck in my stomach was because another tumour is partially blocking the pipe from my stomach to my duodenum. So a second stent is called for - the first for the liver, the second for my stomach but he tells me he can do both at the same time which is a minor blessing. However, he also felt my stomach would not be sufficiently empty by today, Thursday, so best to leave it over the weekend, stick to a liquid diet (thankfully not a clear liquid diet - I can have anything not solid, basically. Phew!) and try again next Tuesday.

So I am booked back in for the procedure then. In the meantime, we just have to wait but waiting is worrying. It’s been a month since I last had any chemo and we know how aggressive my cancer is so things will undoubtedly be growing at pace. If they succeed on Tuesday (of which there is no guarantee but we are confident) then it will be a question of more waiting until my liver function returns to normal - possibly a week or two - and then we can get back to chemo. Straight up Irinotecan this time, should you be interested, which was moderately helpful last time. I guess the one good thing is that, while the cancer may be aggressive, it also seems to be quite susceptible to treatment. If we can get more chemo into me, I shall be cracking on for a bit longer. If the stenting fails, in particular the liver stent, I am finally in serious trouble. So let’s bloody hope it works.

I am jaundiced but not overly so - the whites of my eyes are a horrid shade of yellow, as is much of my eye sockets but my skin isn’t tooooo bad at this stage. It will probably get worse between now and next week but I’ll survive. That said, I don’t recommend jaundice - it has left me incredibly weak, I struggle even to climb the stairs (of which there are only 11), I’m very unsteady on my feet, Bekky has to help me in and out of the bath (not to mention with everything else), and not being able to eat properly makes the whole thing even worse. But as I say, I’ll happily make it through to Tuesday, at which point my fate will be in the lap of the gods and the hands of the doctor who, incidentally, seems to be brilliant. Aren’t they all?!

So there you are. About as brief as it gets! Apologies for rambling on but better to get the full-ish picture across so we all know what’s going on.

Thank you as ever to everyone that has been in touch, and for reading this, and to my wonder-wife who has been unstinting in her dedication to caring for her feeble husband - a horrid job that no one should have to go through but which she undertakes without a word of complaint.

So much love to you all, keep everything crossed for Tuesday and we’ll try to update you on the other side.

Love n kisses.


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