• Bekky May

The Accoutrements of Cancer

The thing with cancer is that it isn't so much the cancer itself as the accoutrements that come with it. They are many, and varied, and on the whole, horrid. They are what make having cancer such FUN.

You see the cancer itself just...is. It's there. Like a thunderstorm. Or a traffic jam. You can't, at least in my case, get rid of it. The bits that can be removed have been removed. The bits that can be treated are being treated. It's just a case of trying to keep it under control for as long as possible, which ideally will be long enough for "them" to find a cure.

Indeed Bekky and I will sometimes go for several days without the "C" word being mentioned at all. And the same goes for the word "cancer". It's so much a constant in our lives that it doesn't need, nor deserve mention at all.

No, it's the accoutrements that get the main column inches in our lives. The cancer garnish - the chemo, the bum, the scans, the scars, the meetings, the travel, the cost, the CEA levels, the weight loss, the waiting rooms, the sheer number of pills, the prescriptions, the phone calls, the insomnia, the diarrhoea, the pain, the constipation...The unending conveyor belt of accoutrements. You don't get used to it. It's day in, day out and it has an astonishing ability to stick a spanner in the works over and over again.

These last few weeks have been a particularly fine example. I had my first round of the new chemo, Tomudex (along with my old favourite Avastin), in early October. It was pretty much as expected, a little bit more severe and unpleasant than the previous variety of chemo, but I got through it and was back at work a week or so later. Tomudex is administered on a three-weekly basis and the second round went as planned as well. However, three days after treatment I received a phone call from my oncologist asking how I was. This is never a good thing - when she gets in touch to ask how I am, you know something's not quite right.

She went on to say that there had been a bit of a problem. It's astonishing how quickly the brain starts spinning when you hear that sort of thing from your oncologist. You immediately flash back over the oncological events of the previous few days - almost in between the words leaving her mouth. Was it scan results? No, I hadn't had a scan. Was it bloods? No that would have come back before treatment. Was it a new problem? Yes. Yes , it was a new problem. Joy.

She told me that when I received my last dose of Tomudex, my liver ALT levels were higher than is safe to have treatment, and as a result I should not have been given the chemo. It was a mistake on the part of the nurses and there would need be an investigation. I asked if anyone would get in trouble - not something I wanted - and she answered in a non committal way, something about a "learning opportunity". Someone was going to get in trouble. Bugger.

I asked if I was in trouble, or at least my if my liver was. She said she didn't know, hopefully not, but we would need a new blood test as soon as possible to check where my levels had gone since treatment. This was on Friday evening, meaning it would have to wait until Monday.

And so come Monday, I made the all too familiar trip to The Conquest, was dragged into a side room for a "chat" about the situation, had yet more blood drained and when I called for the results at lunchtime, I was told my ALT levels had gone up further - they were now at 207 units per litre. Normal is between 7 and 56. I asked what could be done to bring the levels back down and was told we just had to wait and watch. Come back on Thursday for another blood test.

Which I duly did, and this time they were at 340. I spoke to my oncologist in order to establish if I should be worried or not. Another fairly non committal answer. They should start going back down of their own accord. They may have peaked already. Have another test on Monday and we'll see. I asked if they didn't stop going up, could it result in liver failure. Her response stuck with me - "I can't entirely reassure you on that front", she said slowly. I didn't tell anyone else as I didn't want people to worry. I was worried. Was a cock up at the chemo unit going to be what got me in the end? That would be ironic.

It turns out that, as is so often the case, there was no need to worry after all. My next blood test showed a slight decrease in ALT, I don't remember to what level exactly, but it put Bekky and my minds at rest. The levels were going down, not up, and that was all that mattered. The investigation into how I was given chemo when I shouldn't have been continues, and I still hope no one gets into trouble over it.

It was a worrying few days, and it resulted in my subsequent round of chemo being postponed by a couple of weeks which is not what one wants, but at least there was a happy ending. Accoutrements, you see.

At about the same time, excitements of another kind were unfolding too. As you know perhaps a little too well, my bottom has become something of a challenge since my stoma reversal in September 2017. I realise you don't need reminding but the pain has oscillated from mild to interstellar and it has caused me a great deal of suffering.

My mother was doing a bit of research into my situation when she stumbled upon an article that mentioned that if, as I did when I had my liver surgery, one has one's gallbladder surgically removed it can result in a problem called bile acid malabsorption. When we eat, bile is released from the gall bladder into the stomach where fats are broken down and absorbed into the body. Normally most of the bile is then reabsorbed from the small intestine and recycled, with only a small amount reaching the colon, where it is removed in the stools. People with bile acid malabsorption have more bile than normal in the colon. This extra bile makes the colon release more water and speeds up the time it takes for waste to pass through the colon. And this results in chronic diarrhoea. Not to mention the sensation of undiluted sulphuric acid being tipped through your bowel. This was a lightbulb moment, to say the very least.

Quite how none of the specialists I have been under had spotted this link is beyond any of us, but there we go - thank heavens for mother and her curiosity. I got straight onto the phone to my biofeedback nurse in London who admitted she was unaware that I had had my gallbladder removed and agreed that this could indeed be the reason I had suffered so much over the last 14 months. She suggested I take a bile acid sequestrant pill called Colesevelam which would have little or no side effects but would do wonders for my bile problem if there was one. Two days later, on Thursday, I popped the first pill.

Initially, the Colesevelam had the desired effect. Had we somehow stumbled upon a genuine breakthrough?! It would seem so, as I went from taking up to 8 imodium per day to taking none, almost over night. This really was exciting. Friday, Saturday and Sunday passed unremarkably. Sunday night, however, saw the first of the problems. After supper, I started getting pains in my abdomen - sharp, stabbing pains that came and went but seemed to get worse as the evening went on. By bedtime, I was in a lot of pain and feeling pretty nauseous, so I took some painkillers and went to bed, hoping it would pass. It didn't. At 2am, I found myself sitting downstairs by the fire, lit only by the flickering flames, sipping fresh ginger tea in the hope that it would help. I took more painkillers and went back to bed at 3am but failed to sleep. And when I got up on Monday morning, I knew I wouldn't be going into work. I spoke to biofeedback nurse again, who suggested I avoid the pills for the day and take another one on Tuesday. Again, it should improve of its own accord.

And indeed it did, so on Tuesday I sprung out of bed and dashed into the office feeling pretty much right as rain. I took the pill at lunchtime, as advised, and the afternoon passed just fine. Phew.

Or, as it turns out, not phew at all. After supper on Tuesday, the pains and nausea returned with a vengeance. It was properly horrid. And it failed to ease, to the extent that on Wednesday evening Bekky and I took the decision we needed to go to A&E. Hurrah. Well, more precisely I did my best to try to persuade Bekky that I didn't reeaally need to go to hospital and she, wisely, was having none of it. So I moaned, groaned, winced and sighed my way to The Conquest where thankfully we were seen quickly (one of the benefits of cancer is that if you're having chemo, hospital staff don't like you to be around people so you're whisked through the A&E waiting room without time to even sit down!) (there have to be some advantages, after all!!).

Bloods were taken, various people prodded, poked and stethoscope'd me, but after about an hour and a half, a doctor who appeared to be about 14 came in to the bay where I was writhing and groaning on the bed and told us they couldn't find a problem. If I didn't have cancer, he announced cheerfully, they would probably keep me in for observation, but he didn't want to risk infection so off you go. Great. We were told that if it got any worse, we were to come straight back. Worse?! Jeeez.

The next few days were misery. Obviously I stopped taking the pills, but the symptoms failed to ease. They didn't get any worse, thankfully, but we had an exhausting few days (punctuated nicely by a particularly involved MRI of my liver to see what damage the raised ALT levels had done - I still hate MRIs, despite being a veteran). The pain remained almost constant for the whole of the following week, especially if I had the impertinence to actually eat anything, heaven forfend, and I duly lost a further 3 kilos. Double great.

I finally turned a corner last weekend, a full two weeks after the pain first materialised - it reached a crescendo on Friday night and into Saturday when it left me feeling faint, weak, and considering a return trip to A&E but, bizarrely, after a bowl of plain rice on Saturday lunchtime (thanks Emmy) and a good snooze, I awoke feeling much, much better and have steadily improved ever since and now, only a few days later, my appetite is back to normal(ish), my bum is largely under control and the panic is, thankfully, over.

It timed perfectly with my return to the chemo unit yesterday - out of the frying pan and into the fire - and has left me with pretty bad back pain (yer, I dunno either) but at least the tummy pain is over. I shan't be taking those pills again. Apparently, you'll be relieved to hear, there is an alternative that I might be able to tolerate that is just like drinking wallpaper paste. Yippee.

So, you see - accoutrements. F@*#ing accoutrements. Having cancer is easy, it's the treatment and the side effects that will get to you.


I've banged on for far too long already but I couldn't go without mentioning Decembeard, for it is Decembeard already. Last year, I managed to raise nearly £4,500 for growing a beard, and this year while I may be one of the "faces" of the Decembeard advertising campaign, I'm not going to kid myself into thinking that I'll somehow "smash that figure out of the park" - that was a one off. No, I'm not even going to attempt it BUT I am still taking part, having de-bearded at the weekend. If any of you lovely people want to donate, please don't hold back - click here to be taken to my JustGiving page.

Behold, some evidence of my new found (short-lived) fame...

And...a smoothy(ish) on day 2...

Oh, and some of you may know this buffoon - Donald Dewerson - who is currently my one and only Decembeard team mate. You could sponsor him instead if you like...he was man enough to brave a whole head wet shave (less the eyebrows, thankfully) at the weekend which led to no small degree of pain, he tells me...

Looking at this picture, you see he needs all the help he can get...

#Tomudex #ALT #gallbladder #Colesevelam #Bileacidmalabsorption #bilesequestrant

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