The Cost of Doing Business

As I write this on a lazy summer’s afternoon, I’m trying to relax, take the weight off my feet and definitely not go anywhere.  That’s because after my minor op on Tuesday, it hurts to breathe, let alone move.

Radio frequency ablation (RFA) is where (in my case under a CT scan and general anaesthetic) a big needle is stuck in between my ribs – avoiding all sorts of major organs – and comes into contact with the caner sitting on my liver.  I don’t know exactly how it works but the tumour is essentially burned off with radio frequencies – as the name suggests.  I’ll have you know I passed an A level module on medical physics but clearly I should have listened more closely 21 years ago in order to have a better idea of precisely what’s been done to my body.  But I can tell you all about how it feels now:

Painful – verging on very painful.

This is like the mother of all side stitches sustained while being repeatedly kicked in the ribs.  Only it goes deeper – to the point that my expanding right lung must be rubbing against the freshly seared liver and punctured ribcage as I breathe in.  The pain is quite severe and if it’s been a while since my last paracetamol (yes – that’s the strongest stuff I’m meant to take), then simply existing is quite a challenge.  That’s especially if I cough and I’m avoiding any kind of comedy on tv etc. because laughter is nothing like the best medicine right now.

It was bad enough arriving at the hospital waiting room at 7am on Tuesday, nothing having passed my lips since the night before, as instructed.  Hangry and uncaffinated, I of course waited for two hours without anything happening.  But being fasted was especially important as metabolic processes needed to be as slow as possible so that my guts didn’t move too much during surgery.

When prepped for the procedure and form filling, this was again impressed upon me as I was told the tumour was dangerously close to my gallbladder and my expert consultant couldn’t guarantee against splitting it by mistake and flooding my insides with bile.  It was at this point that I was pretty glad that on the occasions I’ve spoken out about the NHS, I’d made a point of saying the people themselves have been doing their best.

And this stance was quite unexpectedly affirmed just before I went under by the anaesthetist, who thanked me for speaking so publicly to share my waiting list story, highlighting some very real difficulties in the NHS system.  I didn’t really know what to say so smiled as a mask was slipped over my head and I was out for the count.

Of course I’ve no idea exactly what happened whilst I was under but it certainly didn’t involve much stoma activity as the first thing I saw when I woke up was the spare colostomy bag I’d left by my side just in case.  Perhaps my internal organs had stayed still for long enough for the surgeon to do her work in peace.  The pain wasn’t instantly horrible but enough that I gratefully nodded when offered that well known synthetic opioid, fentanyl.  This definitely took the edge off the pain – enough for me to engage in a post-op interview.  I’d given permission for Cath the filmmaker to observe and videograph this procedure with a definite sense of ‘good luck getting this past the hospital’.

But Cath is nothing if not persuasive  and with the hospital media manager on hand to hold the boom mic, we now have a few more hours of footage in the can including me talking gradually less groggily and delightedly indulging in my now customary pack of hospital custard creams. I must have been feeling out of it as I asked for sugar in my coffee too.  The consultant returned and used ultrasound (my 4th kind of scan – are there any more left?) to show me that my gall bladder looked intact and there was the kinda faint image a bit burned out of my liver where the tumour had been.  I was warned that a follow up scan would be needed to confirm, but it looked like the whole cancer was gone. What’s more, I was praised for having a very thin layer of fat around the incision which is the kind of thing a runner likes to hear, especially when your doctor is also a runner.  It was this fact alone that made me take her seriously when I was told not to run for a week for fear of internal bleeding.  It takes a distance running doctor to tell a distance running patient not to push it – professional respect and deference would not have been enough!

As is the modern way, I then took to the socials to share the news that (subject to scans) I can claim to not currently have cancer.  It was probably a mistake to omit the word ‘currently’.  And to not add the context that – at stage 4 – this cancer is (as I understand it) guaranteed to come back sooner or later.  In my defence, anyone who’s followed my story already knows this, but it turns out a couple of thousand twitter followers clearly don’t.  My biggest fear was that political opponents would pronounce me cured and call me a fraud for having gone on record to say that I’m dying of cancer.  My situation is a difficult one to communicate in under 140 characters or whatever it is.  It’s nuanced – and one thing that twitter does badly is nuance!

The first person I had to clarify this with was Wes Streeting – Shadow Health Secretary and my local MP – who phoned me upon receiving the news.  He probably wasn’t surprised that phone reception is patchy in hospitals but the signal lasted long enough for us to share the kind of dark humour that can only really exist between people who’ve received the worst news.  So we both laughed a lot when I apologised for having spoiled Labour’s messaging around my waiting list story.  It’s pretty hard to make people believe you’re dying of cancer when you don’t currently have cancer.  But unfortunately, that is exactly what is happening and, not for the first time, I feel like Schrödinger’s cancer patient: Simultaneously alive and very much dying.  The boss didn’t appear to mind though and it was wonderful to receive a congratulatory video message of well wishes from the man himself, Keir Starmer.  I promise this was completely spontaneous and I didn’t pay for it on cameo.  Having met him a few times now, I can confirm that Sir Keir is a really nice and down to earth person, so it didn’t surprise me that he took 30 seconds out of his debate prep to talk to me.

I thought about sending out another tweet to make things clear about the cancer/no cancer and prognosis but when I received an interview call from a Guardian journalist shortly after being discharged, I was able to do this through the national print media.  This is the paper I read and it was the most bizarre experience to see myself as I casually scrolled through the Guardian app, even if I was expecting it.  Apart from spelling my name wrong in the last paragraph, I think it’s pretty accurate.

And the celebrations and congratulations continued as I headed to Nando’s with Ollie, who’d kindly visited to break me out of hospital – they wouldn’t let me go without an escort!  I felt fairly ok after the day’s ordeal and cheerfully chatted my way through the evening.

When I got home just before bedtime, I still felt ok, even if the pain didn’t help me find a comfortable position in bed.  But as the next day progressed, so did the discomfort and not even my super thick and comfortable mattress could provide a pain free position.  The fact the pain was sometimes better and worse made me realise something – there still wasn’t much stoma output and what little was coming out had the consistency of overcooked play-dough.  So maybe the pain being exacerbated by constipation and therefore distended bowels. Maybe it was the fentanyl, of the anaesthetic – whatever the reason, this is not a fun situation! Thankfully, the previous couple of years worth of travails have necessitated a healthy stock of laxatives and at the time of writing, the pain is starting to recede – as long as I don’t move too much!

This procedure has been in the pipeline for weeks, but it hasn’t begun to sink in that chemo and surgery have made me (all but) cancer free.  At very least, it’s bought me time and has done the equivalent job of three months of chemo.  I wonder if I’ll get to ring the bell.  Maybe I’ll get that two month window of wellness to take on JOGLE this summer.  I wonder if it’s already growing back somewhere else.  That’s the problem – everything is still on the table and my future will always be utterly uncertain.  But I’m doing my best to cast those conflicting thoughts aside and just focus on the fact that I’ve earned the right to be cancer free through some considerable suffering before and after diagnosis.  Yes I’m on a rollercoaster journey, but it’s not going to get higher than this before the next sinking feeling as yet again I plummet down to earth with a violent lurch.

I don’t mind that – the air is fresh and the view is beautiful up here!

Strap in – this journey is nothing if not eventful.

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