“That looks good. I should have asked for some of that instead of pineapple juice. I really don’t like pineapple juice.”
These are, as far as I know, the last words of Ronald, who was in the bed opposite me when I arrived in the ward. That night, after all the evening visitors had gone and attention returned to the routine of trundling the chemotherapy drip along to the toilet (which happened to be next to my bed) and peeing into a pot for the nurses to measure, he passed comment on my bottle of ginger beer as he was trundling back to his bed. In the morning when I woke up, Ronald was dead.
One morning in February, 2013, my 2yr old son was jumping up and down on the bed next to me while I was being too lazy to get up. The penalty for my laziness was swift and painful – in his excitement, George jumped just a wee bit too high and too hard and lost control, and landed with a crunch right on the family jewels. Ouch! Blimey. In the shower I had to check that everything was still in place, and I remember noting that one of my testicles felt a bit swollen. A week later, the swelling was a bit more obvious – one half of the testicle felt larger and harder than the rest, a bit like the testicle was sitting in a cup, like a big acorn. At that point, I made an appointment to see the GP who said it was probably a cyst, but made an appointment for me to go a urology clinic. By the time I got there a couple of weeks later, my left testicle was about the size of an egg! Anyway… I saw a doctor who said it was probably a cyst, but made a call and sent me round the corner to have an ultrasound scan. The ultrasonographer turned out to be a fellow Scot, and while he was sorting out his equipment and putting freezing cold gel on my privates, we reminisced fondly about the mountains back home and great hillwalking trips, and then, while he was moving the probe around in the gel and staring at his screen, he asked if the doctor had said what he thought this might be. “Probably a cyst”, I said. And that was the end of the conversation about mountains. All of a sudden, he went a bit quiet.
“I’m afraid it’s a tumour”, the doctor said when I went back to the clinic. And then he stared at me intently, waiting for a reaction that didn’t come. “It’s a lot to take in, but you should know that most testicular tumours are very treatable, and the likelihood is that you’ll make a full recovery”. ‘Likelihood’ seemed to get stuck in a loop in my head as I wondered just what it actually meant.
“So… what happens now?” I asked.
“Well… we’ll make an appointment for surgery, but the first thing we have to do is harvest some of your sperm”
“WHAT!!?? PARDON??!! I mean.. How are you going to do THAT??!!” I blurted, looking for the exit, and I think the reaction reassured him that I wasn’t in shock, or at least, not until I’d heard the thing about the sperm. I was only slightly reassured when he described the <ahem> method and the purpose (to store sperm for future use in case the condition progressed to a point where natural conception became impossible).
And thus began my short but very special relationship with the special room with the private DVD player and the special magazines in the special clinic near Cambridge. Three trips it took, and it’s probably the most uncomfortable thing I’ve ever done in my life. Enough said. Actually, dancing at the primary school disco was uncomfortable and life-changing too.
After the.. you know.. with the beakers and the sperm, the surgery was easy – I was in and out on the same day, a wee bit lighter, a wee bit tender, and quite a lot disoriented by the unusual space where one of my balls used to be. I’d elected not to have a prosthetic installed, because of possible post-op infection/reaction.
At the follow-up appointment I was told what kind of tumour it was, and given a slightly more precise specification of the word ‘likelihood’ that had been casually mentioned before. I was presented with several options for post-operative treatment:
1) Do nothing. Chance of recurrence = about 50%.
2) Single dose of single chemotherapy drug. Chance of recurrence = 5-20%. Side effects could include permanent kidney damage.
3) Trial of new short-term/high-dose cocktail. Chance of recurrence = 2-5%. Side effects could include incurable leukaemia (1% chance).
Blimey. A 1% chance of incurable leukaemia? On one hand that sounds very unlikely; on the other hand if it was the odds in a competition to win an iPad, I’d have bought a ticket for sure. It was a difficult choice and I had to badger the consultant (and cancer specialist colleagues here in the Gurdon Institute) many times for relevant information. In the clinic, everyone who is about to start a course of chemo is given a huge blue folder (in our house we referred to it as the Folder of Death) full of far too much information, most of which is not at all relevant to the specific course of chemotherapy that’s been prescribed. And if you actually read it all, you’d think that certain death is inevitable regardless of which type of chemotherapy is prescribed. It seems that every type of chemo has potentially fatal side-effects, but there’s no indication of the likelihood of those side-effects. There we go – that word again – ‘likelihood’. Vagueness. Might live, might not. Nobody knows for sure. However, I might also get run over by a bus the next time I cross the road, so… I took a deep breath and ‘chose’ option 3.
It’s a 3-day program which delivers a dose of BEP (Bleomycin, Etoposide and Carbolplatin) which is equivalent to about 1.5x the dose administered in a single session of ‘normal’ chemotherapy (normal chemo includes many sessions over the course of 8 weeks). It’s favoured, apparently, for cases where there is some doubt about whether or not the tumour has spread out of the primary area and into the lymphatic system – if in doubt, give it a short, sharp shock and hope for the best. I had to go into hospital for three days, and the remainder of the drugs drugs would be given at a day-clinic.
So.. a week later I arrived on the ward with my bottles of ginger beer and an iPad loaded with movies. Like I’d be able to watch movies. My cannula was fitted and the first dose of chemo started, and I looked around the ward at all the people. It was only when those people started dying that the reality of my own diagnosis really sank in. Until that point I’d assumed that treatment is just a process – like fixing a broken thing – figure out what’s wrong, fix it, check it, and bob’s your uncle. The prospect of death never occurred to me at all, even when weighing up the risks of the various treatment options – that was just a matter of calculation, like I’d done many times at the bottom of rock climbs: you look up at the vertical rock and wonder if you’ll fall or not, but you certainly don’t think about death. But here I was in a bed in the cancer ward. The guy in the far away corner died first – I didn’t get to know anything about him. Then the guy in the middle of the opposite side of the ward, who was semi-conscious and obviously in great pain, and vomiting every five minutes, was wheeled away with his relatives to spend his last day at home. And then Norman went. Fuck.