After what seemed like an eternity I finally got the start date. But not by letter, and not in response to any of my telephone calls. No, it was the “Partner” Research Nurse, who rang me late on 30th June to check that I was up to date with what was happening…
That morning I’d been chasing around trying to find out, but the relevant departments either didn’t know or weren’t answering the phone. Or both. It turns out that my first cycle is in the afternoon of 11th July. Which of course is a planned golf day and Nurse Cathy’s birthday. Cycle four is scheduled for the day we were meant to be heading off for a few days’ break in Jersey. Cycle six, however is scheduled for the week after I am going to go to France for a long weekend of (probably not playing now) golf.
The Partner Nurse was keen to get me in for the blood tests that are needed. In my confusion this morning I had found that I could go in tomorrow morning and just have a fasting test on spec, no appointment needed. But she wanted me to sign all the Partner paperwork as well, so said that she would arrange the blood test for me for next Friday, which would be fine for everyone concerned. And she’d get me an early start so that I could still go to football that morning. I suddenly struck me that after the previous chapter being the Samuel Beckett “Waiting for Chemo, not Godot” type of text, this one is likely to be more Hoagy Carmichael in the “My Resistance is Low” sense!
So to the blood test, and the Partner Nurse said that to save time she’d do it for me. She was brilliant; she told me she’d worked in Renal Wards where she’d had to take as many as eighteen samples at a time from transplant patients for send out around the country looking for matches. The needle went in with barely the slightest sense of a ‘slight prick’, and just the three vials were filled in double-quick time. Weighed and measured, paperwork sorted, and off I was home to have a bite of breakfast before footy.
Monday morning was hot and sunny, so I went off to play footy. It was potentially my last session for a while, depending on my reaction to the treatment. Bald players told me that they’d have my hair when it fell out. I’d already prepped everyone with a diagram of how my fitness levels might be affected by the cycles, starting at a notional fitness level of 10:
So there I am chasing as much fitness as possible, and in my nervous energy moaning at referees who were deciding that I was fouling, or running, or just being too bloody anticipatory for their reflexes to keep up with. At one point one of them shouted that “Stew’s up to 11 now!” A few more disputed challenges later and “Stew’s up to 12 now!” But I thought I said it was just a ‘notional fitness level’!
Anyway, showered and refreshed I head off to the hospital; Nurse Cathy gave me a lift, it’s her birthday, so as a treat she gets rid of me for a few hours. Of course I’m early, which is just as well, as they need me to do a lateral flow test, which I do and which comes back clear; no-one asks to see it.
So, I’m sitting waiting with my fellow chemo patients, and the appointed half-past two passes, and we start to wonder why they haven’t come to get us. Then a nurse appears with a clipboard; she tells us to “Follow me.” After which she hangs around chatting to someone so we all head off regardless to where we know we should be going. Then we get labels for our wrists and shown to a vaguely comfy chair to await our medicine.
I hadn’t had any steroids yet, so I got cannulated by a nurse who turned out to be “my” nurse for the afternoon and plugged into a small bag of such a medicine. She’d loaded five vials of neat steroid into a bag of saline. Twenty minutes later the machine bleeped and said it had finished, please turn me off. She did. Then she said I had to wait another twenty minutes for the steroids to get into the bloodstream properly before she could start the chemo, the Docetaxel, which I am convinced is really an Aztec city deep in the Guatemalan jungle.
The Partner nurse came in and gave me my blood sample programme for the forthcoming weeks, along with the forms for them. I had a chat with both nurses about a planned holiday, and how I was worried about not being back in time for a blood test ahead of it; apparently I can have the test really early that morning, and have a slight delay before the chemo starts to make sure they’ve got the results.
Then I was plugged into the Docetaxel, which turned out to have no Aztec links or imagery at all. It was just another bag of mysterious medical fluid dangling above me. It would take an hour; 4.39pm was the start time. Bear in mind I’d already been there since 2.00pm. My mouth immediately acquired a strong metallic taste, quite possibly reminiscent of a deep snog from James Bond’s famous adversary “Jaws”. You’ve got to wonder about that dizzy little blond girl with the pigtails who falls in love with him. You’ll need to watch the film. Sorry about the spoiler.
The weather was really warm outside, so I wasn’t really wrapped up enough for the air-conditioning that seemed to be on full blast throughout the hospital; I’ll remember that for next time. Others I’d been sat with in the waiting area had been, I thought at the time, heavily overdressed for the weather – they clearly knew otherwise.
At half-five Partner came in and stuck a needle in my arm. Because I was so cold the veins had dived deep, and she struggled to get in where she wanted; so she put a pad over that hole and went for the back of my hand instead. That worked, and she got the “five minutes before the end of treatment” sample. She came back half an hour after the treatment had ended and popped another sample out of the same place she’d got Friday’s one; no problem.
Then came the painful bit, the worst bit of the day: unsticking the cannula from the back of my hand. Ouch, and double ouch. And again. And again. My that wasn’t fun. When I finally got home, just on 7.00pm, I rang my mum, as I knew she’d be worried. Then it was time to get the pads off the puncture mark – four of them. I found that the “medical adhesive remover spray” that they send with the stoma bags to ease them off the skin was a very effective micropore tape remover as well.
Well, I was knackered, it had been a long old day.
So to Tuesday, and all is well. Metallic taste still there, but otherwise the day revolves around Nurse Cathy telling me to make sure I have enough sun cream on. But come Wednesday and now I am feeling a bit strange. Someone on the ColostomyUK website describes being on the steroids as being “wired”, and I’m beginning to understand; I feel more and more energetic at the same time as I am becoming more and more depleted in energy. I am due to visit my mum this afternoon, but I’m too knackered, so I rearrange it for tomorrow in the morning instead. Maybe I’ll be a bit sharper and ready to do a bit more in the morning.
Then I get a call, two in fact, from a real live “Nurse Cathy”; well, she introduces herself as “Catherine” anyway. She’s another research nurse, and she’s lining up my next three blood tests for me. As early in the morning as you can please. On the second call, about ten minutes later, she tells me she’s set me up for next Monday at 9.25, the following Monday at 8.40, then Friday of that week at 8.00 for bloods, weights, and measures (blood pressure).
The week goes on, and I continue to find myself getting strangely alert and knackered at the same time. I can only really operate in short bursts, maybe a couple of hours at a time. This is where I’m headed towards the bottom on the graph. By Saturday I’m a complete waste of space; I manage to make two different plum cakes thanks to the sudden glut of plums from the garden, but that finishes me off. I go to bed at eight o’clock because I’m shattered. But I can’t sleep because I’ve got acid reflux and heartburn. And because we’re in a heatwave, thank you very much.
Next day, Sunday, I ring what I think of as the “Chemo Hotline” looking for advice about the reflux and heartburn. They are really helpful and reassuring, and arrange for me to be able to pick up some Omeprazole from the Hospital pharmacy – ‘give it an hour and a half before they’re ready to collect’. Then I shower and change Zeppy’s bag, prepare a few more stoma bags, and suddenly a mega-sweat hits me; I am dripping again. I have to lie down, I am exhausted, and I’ve done bugger all.
Monday, of course, is my scheduled notional 2 out of 10 day fitness-wise. The problem is that I was buzzing. The steroids have got my brain thinking I can run around all day; the chemo is telling me not to be so bloody stupid, you’ve got no chance. I scored it as a 3 out of 10, because I felt that there was still room for worse to come. In fact there was still room, and it turned out to be the next day, Tuesday, which was the UK’s hottest ever day on record. That was a 2/10 day, and I was so weak I had to go to bed at midday for an hour’s sleep to just get myself mobile for the afternoon.
Of course nothing runs smoothly, and after the Tuesday my metabolism picked up but the Omeprazole started to play it’s old games on me. I knew one of the side effects of it was cramps in my ankles at night, which of course wakes me up, regardless of any electrolyte replacements I take before bed. But it works at stopping the acid reflux. So, I reason that maybe the acid reflux was only happening in the early part of the cycle, the first week? Maybe I can take myself off the Omeprazole and only use it during days 3 – 9 (-ish) of the next cycle? I need a decent night’s sleep, that’s for sure.
Then suddenly on the Saturday, not quite a fortnight into the treatment, I get an itchy scalp, rub my head, and, yep, sure enough, a sprinkling of hair falls in front of me. It’s on its way; the Baldy Man is coming, prepare for a shiny pate! To be honest my main concern isn’t the thought of going bald, it’s the trail of hair I’m likely to leave behind me as it happens; in the bed, in the shower, sitting watching telly… I decide that the best bet is to just go out into the garden and give my head a good rub from time to time. Or maybe get the clippers and electric razor out and just buzz it all before it drops?
There is a video on Facebook of me rubbing my head in the garden and you can just make out a steady flow of hair blowing across the screen as I do so. Later that evening as we were getting ready for bed, Nurse Cathy decided to rub my head as I was leaning over the sink. It was quite a spectacular tumble of hair that lined the sink, but my scalp was by then very tender, especially when she rubbed ‘against the grain’.
It just got worse. Hair falling out all over the place. It is in my eyes, in my mouth, in my coffee cup. I went to play footy after I’d had a blood test this Monday morning, and was taking out handfuls of it to show the lads at the club what it was about. It was actually quite shocking how much was coming out so easily. I went home and had a shower afterwards, and made the decision – it had to come off.
Completely.
A number 0 cut with the clippers followed by a buzz all over with the electric razor followed. At least it seems there is nothing more than tiny fragments of stubble that can fall out from here on in. Mind you, I’ve only just learnt how much insulation a head of hair gives you; I’m now wearing a beanie hat indoors!
So to the lead up to Cycle 2. It is Friday and the next session is due on Monday. In early for a blood test, which was fine – genuinely didn’t feel the needle going in! Then I get the call from my consultant, checking what problems I’d had over this first cycle by way of side-effects. I listed them… acid reflux, hair falling out, and night cramps while I was on Omeprazole for the reflux (fortunately I only needed to take it for six days). Oh, and pure simple exhaustion bottoming out on day 8, but feeling pretty good now.
Are you sure you want to carry on with it? Well, now that my hair’s all been shaved off and it’s dropping off elsewhere, I might as well. He kind of suggested it would be a good idea, because my PSA has actually gone up, to 2.8. He said this is quite common, as the cancer goes into a sort of aggressive “defence against the chemicals” mode. Through Cycle 3 there should be signs of the PSA dropping again, and don’t worry, there’ll be plenty of blood tests to monitor it!
So to today, and Cycle Two. I have to have a late meal of mashed together pilchards and cream cheese pâté on toast, because I have to take four steroid pills twelve hours before the chemo is scheduled to start and I’m meant to do that after a meal. And the chemo is scheduled to start at 2.00pm. So the pills have to be taken at 2.00am. The alarm goes off, as planned; I take the pills, as planned; fortunately, I go back to sleep.
This time the chemo session is really straightforward. In at 2.00, delayed ten minutes while they sort things out, then in with the cannula, flush it through, and we start the actual Docetaxel at 15:03 precisely. I manage to finish off reading Bob Mortimer’s autobiography “And Away…” just in time for 16:03 and a final quick flush.
Being sensible, I have brought a can of stoma bag release spray with me. It’s not quite a painless release of the cannula from the back of my hand, but it’s a damned sight less painful than Cycle One’s cannula was. I’ll do that again.
‘Dad’ joke of the chapter: I’ve realised that as I understand more about the chemotherapy regime I’m undergoing, so I’m becoming the ‘Lone Ranger’. Each day I’m a little more chemo savvy….
I’ll get my coat….
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