The Chemo Diaries
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"How aaarrre you?"
Just one of the many things that change when you have cancer - the intonation people use when enquiring after your well being. Gone are the halcyon days of a simple "How are you?", replaced by a new emphasis on the word "are". "How aaarrre you?". I guess it's to indicate a heightened concern as to one's health. We're all guilty of it, and I include myself in that number, and it's mostly subconscious.
In fact, the conversations I have with people these days all go along very similar lines. It starts with "How aaarrre you?" and then we spend quite a long time on the subject of cancer until I diplomatically try to steer it on to something else for fear of them getting bored. But please don't think it upsets or annoys me. I don't mind at all. Really, I don't. In a way, it's rather comforting - people are concerned, they care, they want to know how my treatment is going, and I really, really appreciate that.
Anyway, that's a long way of getting to the point (story of my life!). And that point is that, while I'm undergoing chemotherapy, I get asked about it a lot. So, after my previous "episode" of chemo, I thought I would keep a diary over the two weeks that followed so you lovely people could have a peer into the murky underbelly, the nitty gritty (or should that be shitty gritty?) of cancer treatment...
Fri 10th November (Day 1)
As Bekky and I are driving to hospital shortly after 9am, it dawns on me, not for the first time, that I am feeling the best I have felt in exactly a fortnight. My brain appears to be functioning without any signs of fog, I have no nausea, no pain, no fatigue. I feel really quite well, and I am about to go into a room to be made to feel bloody awful again. It’s not f*cking fair. Why me? Why us? I think about “everyone else”, living their normal life, looking forward to that Friday feeling when they get to leave work and go home, perhaps go out for the evening, see friends, have a drink, enjoy themselves. No such luck for us. I'm going to be intentionally poisoned.
The chemo session passes as usual. I chat to the lovely nurses and fellow patients, stare at my computer, eat an NHS sandwich at lunchtime - egg today, thanks for asking - and I leave as usual at about 2pm feeling fairly rotten. Foggy, mildly nauseous, full of steroids and toxins, a bit wobbly on my feet as though, if I stand up too fast, I might topple over. Spaced out. Queasy. Tired. It's a bit like a very stomach-based hangover. It’s horrid.
Mum kindly picks me up as Bekky’s at work. She drops me at home where I light the fire and flop onto the sofa where I spend the afternoon and evening doing very little.
Sat 11th November (Day 2)
I awake early and start the day feeling alright. That tends to be the way – the first two or three hours are ok, I have energy, I do last night’s washing up, make some breakfast, faff about on social media, take three Dexamethasone (my steroid of choice) and one Ondansetron (my anti-nausea pill of choice), shower, dress and then to the sofa until lunchtime. Today is alright actually – in the afternoon I even manage to photograph my former mobile phone and stick it on eBay. Slowly, though. Everything is in fairly slow motion. The steroids undoubtedly help, but I only take them for the first three days, after which it's a case of "you're on your own now".
In the evening, Johnny and Liv, our next door neighbours, join us for a cup of tea on their way to Rye Bonfire Night, then Bekky and I have some supper, watch some drivel on the TV and Bekky’s off to bed. My steroids keep me awake so I stay up till about midnight playing an escapist strategy game on my computer that I’ve been playing for about ten years now. Still not bored of it, which either says a lot about the game, or me...
Sun 12th November (Day 3)
My “late” night combined with a couple of trips to the dunny in the dark means a fairly late start for me – I don’t surface until 8.30am, Bekky a bit after (it's Sunday, after all). Washing up, tidying up, more social media faffing – an amusing conversation on Twitter with a fellow bowel cancer patient, @24hrswithcancer, about the unamusing situation of being caught short with “bowel problems” when out and about.
Another wonderful friend and neighbour, Loopy, who has been enormously kind and helpful throughout this damned ordeal, kindly takes the dog for a good walk. She returns an hour later, soggy, tired and happy. The dog's alright too. Boom boom.
At lunchtime, the district nurse, Nicky, comes by to detach me from the chemo pump to which I have been attached since leaving the chemo unit on Friday – always a relief, like being unshackled from the constant physical reminder that I’m undergoing treatment. Being unshackled also means I stop accidentally catching the tube from the pump on door and drawer handles, pinging me about the place in the process.
As darkness falls, my wonderful aunt comes round bearing the Sunday papers and a pot of her amazing macaroni cheese. She doesn’t hang around as it’s Sunday evening and neither Bekky nor I are on the best form, but it’s hugely generous and appreciated.
A quiet evening ensues – bangers and mash for supper and then Bekky, the dog and me curl up on the sofa, catching up on the latest series of Grand Designs. Perfect.
Mon 13th November (Day 4)
Early start. For some inexplicable reason, I thought today would be a good day to have the sitting room carpet cleaned - black dog -> black hair -> it needs it! - so we need to do a bit of tidying.
Bekky heads off to work, the cleaners arrive and I gently meander to Rye to get some cash out for them. I feel fairly well, all things considered, but then find myself having to make three attempts at parking my car in a space big enough for a pantechnicon, and still manage to reverse smartly into the car behind in the process. Perhaps I’m not quite as well as I think.
I get home to find the carpet several shades lighter, which is good. And the rest of the day passes gently. I trundle out again a bit later to drop off some prescriptions off at the surgery, this time without motoring incident. Mum and Dad drop in on their way by to say hi and check I’m still alive. Otherwise I am largely sofa-bound.
Tues 14th November (Day 5)
Ditto. Mostly sofa-bound, mostly foggy, mostly tired. The neuropathy in my feet is annoying, especially at this stage when I'm not moving about much. Fortunately for me, it only affects the soles of my feet and feels like I'm wearing a particularly tight pair of shoes which I can't take off. It goes on 24hrs a day and was caused by my previous seasons of chemo. Annoyingly, I may be stuck with it. I suppose, looking on the bright side, I'd be a whizz at firewalking though.
I am introduced to an app by a friend in Hong Kong – FightList: a trivia game wherein you have to find more answers than the person against whom you are "fighting". Ordinarily I’m quite good at these things but today, my brain is simply not working. Chemo brain. It's a well-known side effect. “Countries beginning with C”, it says. OK. Easy. China...Cambodia… um….. er….. ummm….nothing. Canada, Chad, Chile, Cameroon – none of these come to mind. I give up.
In the afternoon I manage to meander my way to Loopy's nursery school across the field to see if I can work out why their backup drive isn’t backing up. I fail at that too. Best to stay quietly on the sofa, I reckon.
Weds 15th November (Day 6)
Today’s mission is to try to transition from taking up to 12 Imodium tablets a day to what I hope will be a much lower number of codeine-based Cocodamol tablets. A big deal, given the amount of gip and extraordinary levels of searing pain my arse has bestowed upon me since starting this season of chemo. On various occasions, I believe I have been in greater pain than I have ever experienced in any of my 39 years to date. Several times, it has felt like I'm pooing a particularly broad and gnarly tree trunk. Blessed with an abnormally thorny climbing rose. Other times, it's like someone has inserted a sulphuric-acid coated chestnut case. It burns and prickles and I have to check regularly that it's not actually on fire. I had no idea I could make some of the noises I have been making - yowling and moaning and wincing and howling. It's intense.
Not only that but, as I'm sure you know, intense loo-based experiences are utterly draining, both physically and mentally and help in no way with already low energy levels. It leaves me feeling washed out, weak and sore.
Breaking with habit, I start the day with a single Cocodamol tablet before breakfast instead of my usual four (yes, four) Imodium tablets and, initially, all goes well. In fact, I feel great – that would be the codeine then. I manage to empty and tidy a whole cupboard in the kitchen before collapsing onto the sofa by mid-morning to recover from my exertions.
Another tablet before lunch and things continue to stay settled, but by mid-afternoon I start to feel a bit wary. A sixth sense, if you may. Between 5pm and 9pm I make five trips to the loo, each more painful than the one before. The final one has me making noises akin to a man dying in a bloody and dramatic scene in a Hollywood movie. I emerge to find Bekky in tears on the sofa – she has the unfortunate honour of having to hear my howls through the bathroom door and it affects her deeply. We hug and, lucky for me, the pain in my posterior passes as quickly as it arrived and, having had my third Cocodamol for the day before supper and two Imodium after, things begin to settle down. The thought of eating is a worry when this is going on. It's frightening, because you know that whatever you eat will have to come out. But then you get hungry so you have to eat and the whole cycle starts all over again.
I retire, hurt but still smiling – that’d be the codeine then – and hope tomorrow will be easier.
In brighter news, my phone is making good progress on eBay and it looks like it might sell for about the amount I had hoped. Huzzah.
Thurs 16th November (Day 7)
High-energy start to the day: I hoover and mop the kitchen and the bathroom. Ooooh yeah. Rock n roll. Then fall face down onto the sofa where I stay for some time, ruminating over how I have done way too much, too early in the day.
I manage to drive (carefully) to Hastings in the afternoon to get a few bits from the supermarket but that is the extent of my day. Definitely feeling better, but still having to be very careful with how much I do.
Having little or no energy most of the time is one of the greater challenges that comes with chemotherapy. Recently I have learnt from my wife, who has suffered from M.E. and ulcerative colitis for some years, that those suffering from a chronic or debilitating illness use the Spoon Theory, a metaphor for the "reduced amount of energy available for activities of daily living and productive tasks". You start the day with a very finite number of "spoons" which decrease over the course of the day, much like the battery in a phone. Use too many spoons too early in the day and you pay the price later in the day. Manage your "spoons" carefully and you can still do stuff later in the day. It's a very useful metaphor in the circumstances.
In poo news, today is on a par with yesterday – much rushing back and forth to the loo, one change of underwear early on, and not an inconsiderable amount of pain. The Cocodamol is doing something but it’s nowhere near enough. I revert to Imodium in conjunction with Cocodamol – taking some of both rather than a lot of one seems a sensible way to go. I still haven’t found the balance but I am working on it. Several more trips to the loo between supper and bedtime result in a respectable degree of agony, eye-watering, wincing and swearing. Two more Imodium before bed sees me through till…
Fri 17th November (Day 8)
…when, at 5am, I perform the “wake and dash” manoeuvre, at which I have become so expert. It’s great, this chemo business. More pain, more wincing. Not the best way to start the day.
I am back at the Conquest Hospital shortly after 9am (having fully dosed up on both Imodium and Cocodamol) for a planned port flush – flush being the operative word at the moment – wherein they pump several syringes of saline through my portacath and then endeavour to extract blood from it in order to ensure it keeps working. It goes better than it has in weeks and we get a full syringe of blood on the first attempt. Result!
Two of my oldest friends, Paul Sprinz and his sister Micha, travel down from London to have lunch with me in a lovely little boozer in Rye. Sadly, Bekky misses out again as she’s at work. My "spoon" level is distinctly iffy, but it's such an opportunity, I can't resist. We enjoy a fabulous lunch together, catch up on news, meander through topics ranging from marriage and religion to the chances of extra-terrestrial life and quantum theory, and it’s wonderful. Great to be somewhere other than at home on the sofa, great to be hanging out with old friends. The chemo-codeine combo definitely leaves me operating at about 50%, but I know they don't mind. Thank you Pablo and Michs.
Sat 18th November (Day 9)
I finally feel as though I may be emerging from the fug. I am tired after yesterday’s exertions but feel comparatively well, and my trips to the bathroom are slightly fewer and further between. Bekky and I even manage to creep up to the pub for a pre-supper drink which is fab, although it’s not until we get there that I realise that quite a large chunk of my brain has seemingly been removed when I wasn't looking. I feel vacant, like I’ve received a hefty blow to the head, and it’s difficult to engage. A gin and tonic helps – beer is off my menu for the time being – and it’s lovely to be out and about with my wife. If it weren’t for my slight lack of brain, things would almost be normal.
My phone sells on eBay for a respectable price to a man called Darren who subsequently refuses to pay for it. "My wife been out and bought a new one sorry , so can u cancel this please thks [sic]", he says. I politely inform him that that's not how eBay works. "Well I didn't know my wife went and bought a new Samsung s7 edge till I got home so there u go better phone than yours sorry mucker[sic again]". Nice.
I relist the phone.
Sun 19th November (Day 10)
It’s a beautiful autumnal day so Bekky, myself and the doggo head to the beach for a gentle stroll, along with, it would seem, the rest of the population of South East England. It's wonderful though. Things definitely feel as though they are improving.
Mon 20th to Fri 24th November (Days 11 to 15)
Things at this stage pick up a bit, given we’re now 11+ days into this “episode”. Suffice to say the week steadily improves, with just a slight blip on Tuesday when I get up, raring to go and am poised to roar in to the office, then find myself horizontal on the sofa for the whole day for no real reason except…well…chemo.
That aside, I manage to get into the office and do some work every day (including Saturday, I hasten to add), as well as getting out to photograph several houses which I thoroughly enjoy and, again, gives me a slight sense of normality in my life. I am lucky enough to have (another) fabulous lunch with old friends who have also managed to flog all the way down from London on Wednesday (thanks Tom and Didz), AND go out for a gentle dinner with my wife on Thursday (we had an excuse though - power cut at home, see). Tellingly, though, I am too tired to pay a visit to my local pub on Friday evening which is disappointing.
Friday 24th should have been chemo day, being 14 days after my last chemo "episode". However, having chemo on a Friday is rubbish - you feel rubbish all weekend and all week and are only beginning to feel normal by the time the second weekend gets round. So I moved it to a Monday...yesterday, in fact...which we hope will be better...we'll see.
Sat 25th to Monday 27th November (Days 16 - 18)
Well, this is about as good as it gets! I've sailed through the 14 day mark and am now into the longest chemo-free stretch since early October. I feel nearly normal! On Saturday, yet more wonderful friends journey down from London to meet Bekky and I for a (yet another) fabulous lunch in Rye (I know, I know!) and we manage no fewer than 3 hours in their company before sloping off to spend some time asleep in front of the fire in order to recoup all those spent spoons. But again, it's a splendid day which we enjoy hugely and which breaks the norm with aplomb. Thank you Katie, Brian, Charlie, Frederick, Flora and Pearl.
I realise it sounds a bit as though all I am doing at the moment is eating lunch with friends, but I hope you understand it's more or less the only silver lining to a pretty dark and gloomy cloud at present, so, frankly, back in yer box. We're very lucky that friends want to come and see us and lunch out is significantly easier than trying to entertain at home at the moment.
Sunday is another beautiful sunny day and I have an apparent surfeit of energy - I manage to rake leaves, mow the lawn and walk the dog without too much trouble, perhaps subconsciously enjoying being outside and active before the onslaught of poison destined to fill my veins tomorrow.
Early beds and a restless night follow, then it's straight to hospital for an 0900 start to Chemo, Season 3, Episode 4. This will be number 17 in total.
And so it all begins again.......
A very quick and well-intentioned note: we have been overwhelmed by the number of friends dropping by to see us over the last few months - it is deeply kind and touching. But may we make a polite request...before you come by, we would be hugely grateful if could you give us a call or send us a text, just to let us know when you would like to come and see if it's suitable? You see, I may appear to be reclining on the sofa (or going out for lunch!) but it doesn't necessarily mean I'm always in social mode, and Bekky is having to look after me as well as carry on her various jobs and her M.A. at the same time so is not exactly "time rich" at the moment! We are deeply grateful to, and would love to see, anyone who would like to see us but right now it kinda needs to be on our terms, so please just get in touch first to check that it's a good time. That sounds terrible, but it's not meant to and we sincerely hope you understand.
Similarly, if you text/email/call and leave a message for Bekky, she will respond but wants you to know that it may take a bit longer than usual as (a) lots of lovely people are getting in touch with her - thank you all - and (b) it can get a bit overwhelming for her tiny little dyslexic brain so bear with and she'll be in touch in due course - a lack of instant reply doesn't mean she doesn't love you! x