Chemotherapy round one

HumblePieI do realise I’m just now rolling out the pastry for next week’s humble pie. I’ll likely be eating it by then, when the chemotherapy really kicks in and I feel sick as a dog.

The start of my chemotherapy on Tuesday was quite unremarkable. We came to Belfast City Hospital for 1.30pm, and not long after I was taken away to have some blood samples taken, my height measured and I was weighed.

I was disappointed to discover I’d put on around half-a-stone since I started radiotherapy in early June, which just shows you what cutting back on the cycling can do, especially when conjoined with a couple of weeks of the in-laws’ delicious puddings while I was in ‘recovery’.

I shan’t tell you how much I weighed then or now, because you’ll just call me vain, and I know you’re right. But when you’re cycling up hills, every pound counts.

I’ll keep rolling out that humble pie pastry anyway, because I may well be chucking up most of what I eat in a week’s time – if I’m able to eat anything at all.

I met my oncologist who was (blush) very impressed with how I’d got through radiotherapy, and said that I might expect to come through chemotherapy even easier (rolling, rolling, rolling) – though nothing was guaranteed.

She then laid out my chemo regimen, which quickly took the colour from my cheeks. The very word regimen is enough to make you stand to attention, as if you’re about to get a dressing down.

Mine is called PCV and is not considered a walk in the park. But it is currently regarded as the most effective way to keep my particular type of brain tumour at bay. Added to surgery and radiotherapy, it has been shown to add many many years to the lives of those effected by oligodendrogliomas.

I haven’t had surgery, but I do have an added bonus. I have a specific genetic signature in my tumour, a particular set of chromosomes missing (1p/19q deletion). PCV chemo works particularly well with this genetic signature, when added to radiotherapy.

It works so well that the median survival rate has not yet been established. In blunt statistical speak, that means for all the time they’ve been specifically testing the PCV regime on my particular type of tumour, more than 50% of trial patients are still alive. That’s not a cure by any means, but it means the treatment can sometimes stretch out the cancer into something more like a chronic long-term disease.

I will have six cycles of the PCV regimen, beginning every six weeks. Tuesday was the first day of the first cycle.

Each day-one, my oncologist will meet with me, discuss my symptoms and any side effects, and we’ll put in place any changes she thinks I need to mitigate them. That might be nothing, it might be to change my anti-nausea drugs, to change the dose of chemo I need, or to delay chemo altogether. It all depends on how I am getting on, and what my blood samples are telling her about how my body is responding.

Chemo is going to hammer the tumour cells, but it will also hammer other fast reproducing cells such as my red blood cells (which carry oxygen around the body) and white blood cells (which fight infection), and hair (ha!), sperm (ha! ha!), and the cells in my mouth – I might need to get a children’s toothbrush (boo!).

If my white blood cell count drops too low, I’ll be very susceptible to infections that could be life threatening. I’ve been given a thermometer to take home, with a warning to contact the hospital if my temperature goes too high.

The 11th day of each cycle is my most vulnerable to infection; so dangerous I have to have my bloods done again at my local GPs, but the nurse wants me to sit away from the other patients so I don’t pick up any of their nasty lurgies.

Let’s be honest. With a baby and two primary school age kids, avoiding infections is going to be tough over the next nine months. We’ll need to keep a close eye, and I’ve every reason to expect at least one cycle may need to be postponed.

On the first day of the cycle I’ll be given all three of the chemo drugs in hospital. I’ll be given vincristine (V) through a canula in my arm, and I’ll take procarbazine (P) and lomustine (C) in tablet form. At the same time I’ll take some anti-sickness medication and some steroids.

Then for the next nine days I’ll continue to take procarbazine at home. This is all pretty toxic stuff. The vincristine is kept under an opaque cover when it’s being pumped into my arm, because it reacts with light. I can’t touch the other two sets of tablets with my fingers, so have to pop them out and into a little plastic cup, before gulping them down. I have to carry a little warning card around in my wallet, about the chemo and about the steroids.

The nurse didn’t need to advise me to keep all this stuff away from the children.

I’ll also continue to take the steroids and the anti-sickness drugs for two or three days after each first day of the cycle.

After ten days I’m allowed the remaining days of the six weeks in ‘recovery’, before we begin the whole cycle again. Six times in all.

This time round I’ve been given some heavy duty laxatives, because I had such trouble with the anti-emetics and my bowel movements after radiotherapy. It tastes like very salty and limp orange squash, and is profoundly disgusting.

I’m not allowed to drink heavy red wines (I don’t drink), salami or chorizo (I don’t eat meat), heavily veined cheeses (I hate them anyway), or Marmite… ah, I love Marmite. Is it really worth that!

And of course, I need to continue taking my anti-seizure medication. So, a quick calculation makes my current prescription look like this:

Vincristine (chemo)
Procarbazine (chemo)
Lomustine (chemo)
Steroids (anti-sickness)
Ondansetron (anti-sickness)
Keppra (anti-seizure)
Clobazam (anti-seizure)
Epilem (anti-seizure)
Nexium (anti-stomach ulcer)
Laxido (anti-bum problems)

That was on Tuesday. I was in hospital from 1.30pm until 6pm, but most of it is all about waiting. After six weeks of daily radiotherapy, it’s what I expected. It’s now Thursday, and so far (rolling, rolling, rolling) I can report no ill effects at all. At either end.

I know this will not last, but I wanted to mark the beginning while I was well enough to do so. My thoughts going forward are:

However ill I become over the coming months, the likely benefits afterwards are huge (though not guaranteed). Doing nothing was no longer an option, as much as I wanted it to be.

It’s hard to predict what happens when the chemo is over. I’ll have an MRI in September, but that’ll just give us a baseline from which to measure the growth (or contraction) of any tumour that remains. The September scan and the ones following it will probably be the scariest ones I’ve had since the very early days of the tumour.

I still have a brain tumour that will eventually regrow and end my life. I think these thoughts often, but have to park them to avoid becoming paralysed.

I’m still a cyclist. I was on my turbo trainer last night, and I’ll be fiddling with my bike this afternoon with a view to take a ride this evening. As always, I’m not climbing off the saddle until I absolutely have to. I may not be up for racing or the big miles, but I’m still here. And I’ll be back.

Now, time to go get some of that delicious laxative down me.


  1. I appreciate you taking the time to post this, Gideon. As always, my thoughts are with you on this, rather unpleasant, journey. It’s hard to know what else to say, other than I shall be following you.

  2. Thank you for this.I have been “well” for 10 years or this new version of well i have to live with.seizures wobbling around like a drunk lots of anti eps.whats not to like?
    I am going to think seriously about starting chemo.One day the results from the giant white magnet will make it essential so why wait? It has been mooted that while i am relatively strong i may cope better.So i do appreciate you Sharing your experience.Radio sounds vile and having the mast fitted the stuff of nightmares but i do have the chemo sensitive oli and i am now noticing my balance getting worse.Also i feel after all this time of watch and wait i want to feel i might be getting ahead of the tumour.I frankly have nothing to lose.Good luck and i am very grateful for you sharing this.

  3. Thank you for sharing, Gideon. I hope the days since you wrote this post have not been as bad as you recognised they could be. Chemotherapy is rough – but I’ve always considered it better than the alternative!

    All the best.

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