The story so far; swollen tonsil noticed end April. Not very painful so didn't rush to doctor.
Four weeks later, still there so made an appointment.
'Quimsy,' he said. 'Take these ten day's worth of antibiotics
and come back.'
'Makes a change from the "Oh, it's a virus" I usually get brushed off with,' I thought.
But no effect. 'Go to the hospital,' he said. 'Maybe they can lance it.'
But no lancing takes place. Two young doctors shove a camera up my nose
('The indignities of hospital treatment commence,' I thought.)
They hummed and hahed and asked me too many questions about my former smoking habits.
Next for confirmation:
a CT scan of the chest (make sure it hasn't spread),
and a biopsy under local anesthetic (presumably to make sure the cells they
found in the lymph node did come from the adjacent carcinoma and were not put there by the bad fairy.)
Back to the consultant to confirm findings and set out a treatment plan; two rounds of chemo at three weekly
intervals, then six and a bit weeks of daily chemo/radiotherapy
.
All done by September, then. With a couple of months to get over the radiation, back to normal by Christmas.
Regular checks for five years, though, because the Cancer Fairy is a most persistent little bugger.
Before radiation loosens my teeth, though, the hospital dentist has a good look to see if any are likely
to drop out as a result, leaving me open to infection while my immune system is blattered by radiation.
He identifies five molars! Argh!
I'm learning to eat like a rodent nibbling on acorns.
Oh, and a PICC line, a tube in my arm, up and around to the vena caba to squirt the chemo in. A tricky little thing to get used to - especially later when a bottle is attached for four days.
It makes for good entertainment when I show it to the girls, explaining that it enables me to drink while travelling on my motorbike and getting them to guess where the pipe goes in.
Friday 10 June, first chemo session. I'm sitting in a very comfortable, light and airy bay of four beds, though we're all sitting in armchairs, wearing clothes rather than gowns, and generally being treated with more dignity than one often gets in hospitals. Nursing is often one-to-one throughout the day, so we're getting our money's worth out of the NHS.
There are two very poorly looking old men in here, one with tearful looking wife, the other I overhear saying he is now 'staying with friends.' And one bewigged but cheery older lady, who looks like she is the sort of person who keeps it all in. A look of deep sadness comes across her when there is nobody to banter with and she looks out of the window in quiet contemplation. She mentions a hernia that couldn't be operated since the cancer was found, and taking Wolferin. She certainly needs all the optimism she can muster.
I've had some anti-sickness meds and now I'm hooked up to a bag of steroids, to be rapidly followed by the first of three litre bags of saline and electrolytes, and two flavours of chemotherapuetic poison - made fresh just for me on arrival. A third I get to take home in a bag strapped to my waist to maintain my poison intake for the next four days. I fancy I'll be glad of the anti-sickness medication. Oh, and diuretics, to keep the saline moving through, and disposable measuring jugs and a score sheet to keep a tally of how much I pass.
Lots of time to use - not 'kill' - with this treatment. I took the precaution of putting an ebook reader app on my iphone a couple days ago, along with a couple of free ebooks from Project Guttenberg - ones from my 'I must get around to reading that some day' list. Extraordinary Popular Delusions and the Madness of Crowds by Charles Mackay is first up. I notice my battery is starting to fade so I alternate with some of the three year old magazines out of the waiting room before long.
Free lunch. There is such a thing, after all! But it's the smallest pack of sarnies I've ever seen.
1400, a cup of tea would be really nice about now.
The sick old man leaves, returning to his friends' house, no doubt. His slot is taken by a fit looking, cheery retiree. An old hand at this. He was here five years ago and it's come back. We chat a bit. He shows me where the kitchen is where we can make teas and coffees; nobody else thought to tell me about that.
A glance at my notes, I see I am down for three cycles whereas the consultant said two. Will check that with nurses. Being intollerant of this sort of confusion, misinformation and misunderstanding is part of the new me, I feel, a 'B side' to the determinedly upbeat, lets-get-on-with-it, life's-too-short response I'm adopting to this illness. Must make sure I don't tip over into tetchiness when dealing with such things; assertiveness and patience will be the watchwords.
Making friends with my bottle of chemotherapy
Sunday 12 June 2011. I came home feeling fine with a sack full of anti-sickness tablets, steroids and precautionary
anti-biotics. (Sue and the girls had been on tenterhooks all day; I feel quite a fraud!) No significant nausea experienced, and the steroids make me feel like I'm ready to take on the world!
This is all off to a good start.
Four days in. My little bottle has emptied itself and the district nurse is due today to disconnect me. It's been an interesting uppy- downy sort of four days. Saturday; high as a kite and on the go all day. Sunday, progressed from 'fine' - went out for a pub lunch - then dipping to 'feeling about one hour in to a rough North Sea ferry crossing' and settled for a lazy rainy afternoon on the sofa. Yesterday I felt like I'd been on the razz all weekend. Today, like I'm recovering from a fever.
A bit of a rollercoaster ride
Sunday 19 June 2011. That was an evil week; felt sick as a dog pretty much Monday to Friday. So ga ga as to spend all of Friday thinking it was Thursday and looking forward to pulling a sicky the next day once I got the current urgent job done! Didn't actually bring dinner up, but with a fungal throat infection taking root, it was hard enough to get dinner down in the first place. Salt water gargles eventually got on top of the fungus, and combined paracetemol, ibuprofen and the morphine-based gloop I still have from after the biopsy let me get a few uninterrupted hours of sleep. Carried on working as there were two fairly significant jobs in my in-tray, but am seriously contemplating making it up to myself by taking a day's holiday this coming week. Much better by the weekend, enough for a bit of a ride to the shops on Saturday, but a little too unsteady again on Sunday to risk a motorised run out. (Cycled a few miles around one of the local heaths, instead. Needed the exercise anyway.)
An engine is not an absolute requirement for a bike ride.
Monday 20 June 2011. Southampton today for an appointment with the company doctor; a tedious element of company process so the corporation officially knows that I am sick. Fortunately, I'm not feeling at all sick and not only biked in, but came back by the scenic route, stopping off for a lunch on the way.
With the solstice tomorrow, I had half an idea to take the day as a holiday and do a big cross-country ride, riding with the sun coast-to-coast from Lowestoft to Fishguard. But monitoring myself, as I do quite closely now, I could tell from today's ride that I wouldn't have the energy levels to enjoy even half that distance. Besides, there'll probably be some work coming in from Southampton, and at a time when redundancies are in the air, the bloke who is on company record as needing sickies for several months should look to his laurels.
Certainly got my appetite back; tea and a pasty for lunch.
Thursday 23 June 2011. The consultant said to take what I read on the web with a pinch of salt. Well, I knew that anyway, but on the topic of cancer, its causes and putative remedies, the bullshit and quackery is in particular need of salination.
It's people's reasonable fears about the illness that creates the demand, of course, but some of the purveyors of potions and accompanying twaddle, people who are blatantly capitalising on those fears, should be rounded up and shot, I say.
As a rule of thumb, I take a contradiction to indicate that there is some dodgy data involved somewhere and one should proceed with caution. In the case of pills, potions and diets proposed for the mitigation of cancer, contradictions are particularly thick on the ground. It's not so much dodgy data as no data at all ("it's natural, therefore it must be good for you"), or at best tenuous and poorly interpreted data ("well oxygenated cells don't get cancerous, so breathe oxygen").
One source tells me to lay off the dairy products, but then raves about whey-based protein gloop. Another tells me to avoid calcium, while yet another says to heap on the minerals, including calcium.
As I see it, if anything was going to be really bad or especially good for me, the doctors would have mentioned it by now. That said, taking the odd supplement to make absolutely sure I get my full quota of vitamins and minerals is no bad idea. And making sure my diet and exercise regime is more or less on track to give my poisoned, irradiated, but otherwise healthy cells every chance of continuing to do their duty of picking up fuel and oxygen to burn, while suboptimising the environment for the cancerous ones, makes sense to me.
Anything that tastes this bad cannot but be good for you, right?
Monday 27 June 2011. I'm feeling pretty good just now. Even the swelling in the tonsil has gone down considerably. I've been making the most of it before the second cycle of chemotherapy starts on Friday: a dash to Norfolk at the weekend to get Gwynyth online, then a day off today for a nice long ride out on the bike, meandering down the A30, checking out tiny villages with funny names.
Sea this week, seasick next.
Tuesday 28 June 2011.
It's been a couple of weeks now, but some of the promised side effects of chemotherapy are kicking in.
I noticed a handful of loose hair inside my helmet after my ride yesterday, and today, a brisk shake of the head would loosen a clump or two. To avoid looking like a malting tom cat, I got Sue to give me a close shave. I quite like the look, and also the fact that I now have an excuse to add a smoking cap to my hat collection.
Other effects include very much slower beard growth. My morning stubble is about what my five o'clock shadow used to be.
And sense of taste is fading, though more in some areas than others. Tea is so much hot water, but (good) coffee is still good. Apples are slightly fruit-flavoured chews, but peaches are still full-flavour.
Rather dashing, this new look, I thought.
Friday 1 July 2011.
Chemotherapy cycle two started today, auspiciously bang in phase with the new moon, as it happened.
All went to the same routine as last time, except that this time I went armed with the laptop and got a good day's work done, catching up on non-urgent stuff.
What made me grumpy today, though, was that I got to speak to the nutritionist. She told me, quite out of the blue, that I would be getting radiation blasts on both sides of my throat. This was completely new news to me. The effect of it will be to make eating difficult, for which reason an eating tube is strongly recommended. That was only previously mentioned as the vaguest possibility. My instant reaction - reinforced when I read up on the details - was to decline unless I absolutely could not manage to squeeze a bit of liquified something down my throat. I sent her off with as polite a flee in her ear as I could manage with that decision, but to check her facts about the double sided blast.
Apart from the risks of having a tube through my stomach wall, and worse; of it coming out, and even worse still; stinking like a camel because I won't be able to shower, eating through a tube involves squirting 60ml of gloop through a syringe, very slowly, while reclining at an angle of 30 degrees, and staying thus reclined for an hour.
If needed, this delight could take place during the second half of radiotherapy and for a month after or so - third week of August to first week of October. I will resist vigorously, but if I need the blasted thing, it will be sometime during that period, and once inserted, it has to stay in for at least 30 days before they can safely take it out, even if I don't need it.
Not if I can help it.
Monday 4 July 2011.
Consultant-speak for beginners...
Me: "So, I was a bit off colour on the first cycle. Will the next one be better? Does the body acclimatize to the poison?"
Consultant [mumbling, avoiding eye contact]: "Some do."
Meaning: "No, you get sensitised. It'll will be bloody awful."
Thursay 7 July 2011. I've mentioned this before; a brush with cancer is an excellent reminder of one's own mortality, and with the right frame of mind, it encourages one to adopt a very positive attitude: life is short, so get on with it, now, wholeheartedly! The B side of this - bearing in mind that I am by nature a grumpy old git at times - is a certain impatience, even intolerance. There is no time for dithering, and anything that gets in the way gets a darned good kicking! This lunch time, I found myself getting really fed up with feeling sick and doddering down to the office like an old man of ninety. In my uncoordinated state, I dropped a sandwich that I was particularly looking forward to eating, and ended up throwing it angrily at a squirrel, as well as kicking a chair for good measure. The little burst of adrenalin made me feel quite good!
At least the squirrel got something out of it.
Thursday 14 July 2011.
Off to the radiotherapy department today to get fitted with a mask to hold me still while I get zapped over the next few weeks. It looks really freaky and I get to keep it when the treatment is over. Can't wait!
I see it sprayed bronze and black and hung up in the gazebo with a couple of red LEDs behind the eyes.
Maybe with steel nails arranged, Pinhead style.
To complete the Goth image, I also picked up a tattoo, albeit a tiny little one; cross-hairs on my sternum to further line up the radiotherapy gear.
Move over, Hannibal!
Saturday 16 July 2011. An end in sight? An appointment card for my five shorter sessions of chemo arrived. It kinda feels like it'll all soon be over. Even if the 30-odd radiotherapy sessions that come with these five appointments will make me feel like death warmed up, the end of August is just around the corner.
A Summer schedule
Wednesday 27 July 2011.
Here we go on the home straight. Well, the last lap or two, at least. Session one of thirty with the radiotherapy machine in the bowels of Poole hospital. It took pretty much all day because of 'simulation' sessions, getting the machine set up and aligned with marks on my mask, but the treatment was all of three lots of twenty-odd seconds; a two-gray blast on each side of my neck and one from the front to catch the lymph nodes. (Gray: one joule's worth of radiation per kilo of meat.) No perceptible effect, as expected. That will come in a few weeks.
(Total over 45 grays kills off hair cells, over 30 zaps saliva. No problem; I'm happy not to need to shave, and I have a bottle of artificial spit from the chemist.)
Thursday 28 July 2011.
And today, combined chemotherapy and radiotherapy. First the chemo; just one rather than all three poisons - hopefully not the one that made me feel sick on previous cycles - plus anti-emetics (in case it was!) and yet more steroids. Then around to the Varian 1 machine for another two gray's worth. I'm closely monitoring how I feel after this go-round, but I've noticed a bit of a catch: when you're watching out for every twitch and ache and pain, it's very easy to overinterpret
. I was sure, yesterday, that I could feel the start of radiation burns on my neck, which would be ridiculous at this stage. And today, is that the start of another bout of nausea welling up, or is my stomach just churning because the Dorset Cancer Centre managed to forget to deliver my lunch today? However, I've also found that a bit of vigorous exercise is quite effective in snapping oneself out of these hypercondriachal imaginings.
I'm off to mow the lawn ...
My friend, Varian 1, with my mask beside it.
Monday 1 August 2011. Just my luck; the one chemical I get on Thursdays is precisely the one that makes me feel sick ... and constipated! I can tell, now that the steroids have worn off. My mouth is starting to dry out with the radiation, too. How apt; sick as a dog during the dog days. At least it won't last long.
Sick as a dog during the dog days
Wednesday 3 August 2011. I must confess to becoming a little more than usually tetchy, lately,
what with being permanently dizzy, sore, constipated and generally running at around 80%.
I am staggeringly lucky to have a loving - and patient - family around me, especially Mrs S.
That's ‘tetchy’ as in “Satan was slightly tetchy, having found himself dismissed from the Heavenly Host and despatched to the infernal pit.” Four weekly chemos and 28 daily zaps to go. My very own dies irae…
A C16 Christ takes time out on the Day of Judgement to explain how your throat feels after a bit of radiotherapy.
Friday 5 August 2011. A note for the benefit of anybody reading this in preparation for their own different journey: exercise seems to be a good idea whenever you can do it. And note that I say "whenever you can," not "if you feel like it" or "when your possibly over-concerned spouse
doesn't say you shouldn't."
Today, I took advantage of my post-chemo steroid high, and the fact that my possibly over-concerned spouse was out, to cycle to my daily zapping for the first time in quite a few days. I was feeling a little wobbly and under par, but not as much as earlier in the week. And with my weight now going through the 14 stone mark again, I though I could do with the exercise.
After a bit of a sit down once I got back (it's harder coming back than going), I felt good enough to finish off a hefty day's work.
Afterthought, Monday 8 August 2011. Gratifying to note that the Macmillan Trust has just trotted out a report to the effect that people with cancer should exercise. (http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Physicalactivity/Physicalactivity.aspx)
It's all a little bit 'motherhood and apple pie,' I suppose - exercise is good for health - but when it is all too easy to sit down and molly-coddle oneself, the occasional reminder to get off one's butt does not go amiss.
Personally, those leotarded Macmillan poster ladies bending and stretching with jolly smiles make me squirm, but I could quite fancy taking up something vigorous and violent that would express my ire at the Crab and all the side effects of treatment as well as getting some oxygen into the cells. Watch this space.
At least it can't be all uphill; not both ways, surely?
Tuesday 10 August 2011. Here we go. My throat is getting more sore every day, but the greatest indignity is rooted in the fact that my saliva glands are now starting to pack up, beaten into submission by the daily radiation.
I now have either a bone-dry mouth, or a smear of saliva with the consistency of treacle. I swear, if I were to spit, it would spring back at me.
At least I'm not feeling as ghastly as recent weeks - possibly due to vigorous exercise - but my head is definitely away with the fairies. I used to get angry with myself for forgetting things - words, names, appointments, lists of things to remember! - but it's becoming so commonplace that I'm running out of ire to expend on that failing.
What's his name, the thingummy fish, beat me in a memory test.
Friday 12 August 2011. This has got to be worse than not being able to eat! Everything tastes of rusty nails. Except tea, which now tastes like the Dr Schulz gloop, i.e. disgusting. Even plain water is a bit suspect.
This is going to be good for the diet...
Turned down a roast dinner in favour of a cup-of-soup. Tragic.
Sunday 14 August 2011. Another day, another milestone. As of today, I declare myself officially 'old.'
My normal breakfast struggle has long been to stop after the marmite doorstep of toast.
... Or maybe after the small bowl of cereal that follows that. ... Or the second... Or the apple after that.
And if on holiday - which could always be broadly interpretted to include a day out shopping - the inner debate was whether to just have the bacon sarny or the standard full english. ... Or the big english ... Or the Gut Buster Special ...
Today, I dutifully put two weetabix in a bowl, knowing that I'd soon be getting the old 'told you so' treatment at the hospital for declining the stomach tube if I didn't keep my intake up. I looked long and hard at them. Then gently put one back in the packet.
Parting is such sweet sorrow...
Tuesday 16 August 2011. This is starting to get a bit serious, so here's a serious one for any fellow travellers.
With weight down five pounds over the weekend and another two overnight, I clearly need to put the brakes on a bit. (The dietician was quite assertive at yesterday's review!)
But feeling sick as a dog and with most things tasting like axle grease, a smart strategy is required. Soft food in small, frequent portions
seems to be the answer
: a few dollops of something tasty I can hold in the one spot in my mouth where taste buds survive before catapaulting it down my throat before the rest of my mouth says 'Yech! It's axle grease!' Then stop; come back later for part two of what might once have been a single-sitting meal.
Today, I got a runny two-egg cheesey omelette down. (A cooked breakfast after all!) Later, I'll start to experiment with the sack full of freeby Complan-alikes that the dietician gave me yesterday. And there's still the whole World of the Liquidizer to explore.
I'm still going to have the Gut Buster Special as soon as this is all over, though...
Further to my previous bewailing of the onset of age and the inability to shovel it in like I used to, a more useful approach to this and all similar indignities is one I have often espoused as a general life-skill, at least when in a good mood; it's not what happens, it's how you respond that counts.
Un oeuf is as good as a feast
Thursday 18 August 2011. Cogitations during the penultimate chemo session.
He’ll see the wealth he had – for we are all wealthy compared to somebody, just as we are all poor compared to somebody else – and he will remember how he always felt that he had none.
I’m not talking about the jovial curmudgeon here: the one who mutters and curses in jest; the one who really loves his ‘blasted dog’ and actually can’t wait to get home to ‘the old bat;’ who devotedly maintains his ‘old jalopy’ and prefaces much anticipated trips out with the kids with a crotchety ‘oh, if I must.’
I’m not even talking about the reasonably cautious bloke, either, who sees the glass as half empty so as to be able to prepare and make the best of what he’s got.
I’m talking about the one who really does not see what is under his nose; the one who just does not get it. The one who is going to turn back to St P and say “I never realised…”
“I suppose I head downstairs, then?” he will say to St P.
But St P will shake his head. He will gesture towards a chair facing back down the road. The man will sit in it, and spend a goodly chunk of eternity in the real hell of contemplating a life that could have been pretty close to heaven.
I know who he is, because I have spent a large chunk of my life being him. On bad days, I still am, but only on bad days. Which means I am all the better at not being like that for most of the remaining part of my road.
Now, philosophical maundering aside, here’s the plan for The Great Day of Eating which is scheduled for just as soon as I get most of my taste buds back and the soreness at the back of the throat subsides enough to allow solid food to pass without triggering a gag reflex.
Sorted.
There is a certain type of man – and pardon me while I go off at a bit of a tangent for a moment – who is in for such a bloody shock! There they will be at the end of the road, knocking on the gate and bracing themselves for whatever St Peter has to say to them. (Substitute whatever divine power is responsible for life judgement in your personal belief system here.) St P, with a kindly but somehow disappointed expression, will nod back the way the man has come. The man will turn around and there he will see it all. All the hopes and joys ignored, the adventures not undertaken, the happiness disregarded, and even wicked pleasures not really enjoyed.
He’ll see the children and grandchildren – for there are always children in need of a father figure, even if he sired none himself – and he’ll see the joy and pride they could have given him, had he but given them what was really a trivial amount of attention instead of railing at their being such a drain on his resources.
He’ll remember the devoted friends, the loving partner – for nobody goes through life completely alone, after all – who were there to give support and comfort, but whom he perceived as intrusive and burdensome.
Even the boys’ toys, he’ll see – for all us boys have toys, some bigger and some smaller, but we all have them – and he’ll remember how he saw them as encumbrances rather than taking pride in owning them and having fun in using them.
The Complan Kid waxes pretentious ... condescending ... philosophical
Friday 19 August 2011. Too busy spouting cod philosophy lately to keep up to date with what’s happening!
The appointment letter about the hygienist included a tart little paragraph telling me in bold print to bring my toothbrush and other dental hygiene equipment to the session. Of course, some people do actually need quite close instruction on these matters, but I couldn’t help perceiving it as condescending and so planned to respond with humour. I stuffed into my pocket an old toothbrush used for cleaning in the kitchen, a pellet tin into which I crumbled a wholemeal biscuit, and a near-antique garden pen knife from my collection. On cue I presented these to the young hygienist explaining that the brush had served my grandfather well, that the tin contained fine sand, sweetened with a little brown sugar, and the knife was used to pick the bits out after meals.
Her face was a picture, not entirely sure if I was joking. Unfair of me really; in her trade she probably does deal with drongos who would seriously believe my spoof kit to be quite adequate.
Anyway, I made her happy by then showing her a sequence of captioned photographs of the dental arsenal I’ve been using in the fundamentalist approach to dental hygiene I’ve had ever since my last go-round with the dentist before all this cancer treatment took most of my molars away anyway.
So on to today. The last blood test showed that the radiation is frying my red blood cells to a level below that at which radiotherapy can proceed. (“104,” they said, the limit for radiotherapy being 120, though chemotherapy can continue down to 100. What exactly those units measure, I have yet to discover.) So they booked me in to have a couple of units infused.
It’s galling for a long-term donor who had to stop not far short of the hundredth session to sit back and accept a donation. I can’t help thinking of the public-spirited souls who took time out to trot down to the donor centre, thinking maybe of a kid run off his bike, or a young mother with a terrible bleed during childbirth. Instead, their contribution goes to an old bloke who’s a little bit poorly. But ho hum, I suppose; any of my donations could equally well have ended up splashed into the gutter at an accident scene or even ditched as out of date before they could be used.
The latest indignities included a check-up with the dental hygienist two days ago, and now a four hour session having a couple of bags of somebody else’s kindly donated blood dripped into me.
Part of the real dental arsenal
Blood, blood, glorious blood. Nothing quite like it …
Saturday 20 August 2011. Is this the way obsessions start?
I annoy
Mrs S by hovering in the kitchen asking what she is cooking herself; how, with which ingredients, in what order and so on. If I could travel, I'm sure I'd be hovering in my sister's kitchen, too. (The one who magics buffets for 100 out of thin air and does pizza from ingredients and calls it fast food.)
And this morning, I found myself looking over the top of my Motorcycle News with more than my usual half a jaundiced eye, taking in the back-to-back cooking programmes on the TV.
Taking up cookery? Unlikely. For somebody whose skills top out at an omelette, that would take all the magic out of it.
The reader will observe the number of entries here on the subject of food. Unable to enjoy food with my customary relish, I seem to
be doing a Freudian transfer to the sights, sounds and smells of food rather than the eating of it.
Not irritating at all, really
Wednesday 24 August 2011. Counting blessings...
All that said, it has been a rubbish Summer, not least for the kids who have had precious little of their grandparents' attention. Mrs S has soldiered on valiently, making time and somehow finding the energy to give them at least some treats and trips, all on top of nursing duties and general worry about the old man. (I've promised her that if she should fall ill, I will pack her off to the very best sanitorium I can afford!) However, the children show no signs of feeling short-changed, with no more than the routine "it's so unfair" from the near-teen twins. And Charlie even went so far as to recycle one of his very own birthday cards to make a Get Well card for his poorly grandad!
What with cancer research, the children and especially Mrs S, I have an awful lot to be thankful for and I look forward with delight to at least attempting to pay some of it back in the future.
It's Wednesday! A good day, these last few weeks. Being the day before the weekly chemo, I am feeling the least effects of the previous week's poison. And the tiring, sun-burning effects of the week's daily radiation doses haven't quite taken hold yet. Besides, Wednesdays are always good: it's payday (i.e. the day I routinely pick up the week's cash from the cashpoint); my weekly comic, Motorcycle News, comes out; and I usually pick up a lucky dip for the midweek lottery so Mrs S and I can have the fun of oohing and aahing as we 'almost' get each number drawn.
The bonus this Wednesday is that tomorrow sees the last chemo session. Hoorah! And counting today's, there are only 13 more zaps to go. The end is so nigh, I am now making serious moves in the direction of making some sort of return for all the cancer research I've benefited from; plans are afoot, maps are being pored over, weblogs are being prototyped. Keep watching this space.
Charlie demonstrates green credentials
Thursday 25 August 2011. Another milestone
My weight continues to diminish, depsite being able to shovel it in fairly well by sticking to the soft and gloopy, and taking an Ibuprofen or two a little in advance to make sure my increasingly sore throat doesn't spoil the game.
Having been weighed before Chemo, word got round and I got a visit from a dietician who was ready to slap my legs. I reassured her by promissing to up my intake of (free-on-prescription) gloop.
Then round to Radiotherapy for the daily zap. Eleven more to go, now, and these will consitute 'Phase 2' of the treatment. I didn't know it was coming in phases, but what it amounts to is a slight change of aiming point for the radiation, and the addition of a blast of electrons - the heavy mortars of the radiotherapy world as opposed to the high-velocity rifle of plain radiation.
Today, with much relish, I rang the bell hung by the door of the Dorset Cancer Centre, marking the completion of my course of chemo therapy. I got Mrs S to bring a posh tin of biscuits for the staff to have with their tea, which is an infinitesimally small reward for what they do and how well they do it.
'Well,' I said, 'anything to help gain mass.' But I don't think they got that.
That's that bit done, then
Tuesday 30 August 2011. Ouch!
Desparate for something resembling normal food, I probably overdid it with the rice krispies, the bolognese sauce, the chicken noodles, and certainly the rice with a bit of mild curry sauce. It was patently not mild enough!
Ho hum. Back to the pain killers and Complan for the last few weeks, I think.
Small Mercies Dept.: All through this, I've retained (most of) the ability to taste real coffee.
Today, I have the mother of all sore throats. Maybe the Bad Fairy spent all night stuffing stinging nettles and razor wire down my neck. But more likely it is all self-inflicted injuries.
A small mercy
Wednesday 31 August 2011. Let's hear it ...
Heartwarming anecdote from Mrs S: yesterday, she kindly ran me down to the hospital for my daily zap and waited in the 20-minute bay while I dashed in and out again. While waiting, she saw a hagard looking man being helped into a car by a harried looking woman. She recognised the look and went over to say a few words of support. Yes, the man had cancer - the bottle of chemo poison on his waist was a give-away - and coincidentally, it was in the throat, same as mine. Unlike me, he'd just had a stomach tube inserted, and looked several degrees crappier than I generally do. However, it was to the harried woman that Mrs S addressed herself. It turns out she is helping her ex-partner, father of her child, who has nobody else to turn to, so she is definitely going beyond the basic call of duty already. Sue sympathised, told her she was an angel, and all that stuff that comes so naturally to girls*. They hugged and cried a bit and parted, with the angel hopefully feeling not quite so alone in the world.
Anyway, as Mrs S would never dream of pointing out, we suffers get it relatively easy. Sure, we get sick, and the treatment is a bastard, but most of the time we get better, and in the meantime we get all the sympathy and kudos and people tell us we are "brave." (I never have figured out that 'brave' bit.) A supporter gets all the worry, the extra workload and barely a look-in on the sympathy front.
When people see the "I've got Cancer, you know" on my tee shirt (no, not really; I speak metaphorically here), I get "Oh, you poor chap. Do sit down. Of course I don't mind if you go in front of me in this queue. Can I get you anything?"
But if Mrs S tries the line "My old man's got cancer, you know," the best she gets is "Oh, that's shame. How is he bearing up?"
The fact that she has had months of industrial-grade worry on top of household duties I might otherwise have taken care of, double the normal grandparently duties, and has put up with a sickly, often grumpy, distinctly uncompanionly partner at the same time; that all goes by without recognition.
Her, and all the other carers out there.
So from all of us on the 'journey,'
to all of you supporters, and especially from me to Mrs S, a big thank you!
... for the supporters!
(* Blokes do things so differently, don't they? I'd have nudged the man on the upper arm, briefly made eye contact, asked 'Alright?' He would have replied 'Alright.' And we would have parted, brothers in spirit.)
Saturday 3 September 2011. Double ouch!
However, a couple of trips to the very nice doctor and I am loaded up with enough medicines to open a small pharmacy of my own. Experimenting with various combinations, I seem to have it cracked well enough to see me through these last few days, eating enough to keep that scary dietician off my back.
I now have something of a ritual to perform every three to four hours:
Sorted!
Sunday 4 September 2011. ...and it could be so much worse.
It has been a painful few days with the Bad Throat Fairy on overtime. It's not so much the steady soreness; that I can handle with a few paracetemol, ibuprofen, oramorph at nights, and a dollop of distracting activity by day.
It's the ulcers that are the killer. That uniquely sharp zing you get when you poke an ulcer cuts through analgesics and distraction like a sudden electric shock.
In my case, the ulcers have taken up residence at the back of my throat and on the uvula, so I'm guaranteed a zing every time I swallow. Kinda puts you off lunch, that sort of thing.
A neighbour came over this afternoon to commiserate. He's in the Big C Club, too, as well as being one of those old men with big motorbikes. The Crab got him in the prostate and he has to have whopping great injections in his belly, a side effect of which is that he loses balance and so he hasn't been out on his bike for months.
To add injury to insult, the injection is to shut down production of testosterone, so he's unmanned as well as unseated.
A bit of a ritual
Tuesday 6 September 2011. Poor Mrs S
Rain check, sweetheart. Rain check...
Milestone birthday (60!) and there she is stuck at home with a sickly old man and even has to buy her own cake and make her own party nibbles so the kids can come round and have a party for her.
Glad I made her happy on her 59th!
Monday 12 September 2011. Hoorah! It's over!
But best of all, I now have my mask! It has been painted black and bronze, as planned, and is now rigged up with red LEDs for eyes and mounted along with all the other wierd stuff in the gazebo.
In further anticipation of a continued return to normal functioning, I've revisited that matter of a vigorous physical activity to take up. I have now acquired a sturdy oak post and a spokeshave with which to turn it into a quarterstaff. With a bit of a following wind, I'll be off a for a 'mans' weekend' in October to make a start on learning how to wield it.
Last Friday, I had my last blast of radiotherapy. Now comes the ten days of hell as the radiation finishes its work, zapping cells left, right and centre. Steady weight loss and fatigue I can live with, but the sore throat is driving me potty. It is, however, getting slightly less painful each day, and in any case, I have pain killing pills and potions galore.
...And it beats the hell out of having a blasted tube inserted into my stomach!
Another blokey weekend to be determined has been earmarked to learn a few outward bound skills I've always felt I lacked; I can rig up a passable shelter, what with my engineering background, but finding out how to light fires and prepare bush food have long been on my to-do list.
Then there's the big bike ride for Cancer Research UK. Word is gradually spreading, and a couple of generous souls have already made substantial contributions, so I'm still aiming to set off towards the end of October.
And when I've let off all that steam, of course, there must be a week in the sun with the most deserving Mrs S!
The eyes have it...
Saturday 17 September 2011. No it ain't!
The new hell stems from the fact that, being at a low ebb due to the radiation, I'm prone to other infections. In this case, my mouth and throat decided to turn itself into a mushroom farm. The mother of all fungal infections made the inside of my mouth look like I'd been swallowing road marking paint, and feeling like I'd been gargling acid. No amount of salt-water gargles and none of my anti-pain potions worked against this.
A desperate trip to the GP yesterday produced some anti-fungal pills which appear to already be making some inroads, but I'm still spending most of my time in bed, hoping to fall asleep and wake up when it's all over. The lesson here for anybody else on this road is along the lines of don't count your chickens (or make dates for adventurous weekends or spokeshave oak staffs), 'coz it ain't over 'til it's over.
They were right about this being the toughest time. I've been wiped out to the point that I've actually declared myself officially off sick for most of this week and retired to my bed like an old invalid. After much juggling with pain killing pills and potions and frantic trips to the GP to make sure I've got enough of everything, I find the previously troublesome pain of swallowing is actually much diminished. I even managed the first pain-free cup of coffee for a long time this morning. (Needed it for the laxative effect, what with my fibre-free diet.)
Dammit woman! Hurry up and sing!
Wednesday 21 September 2011. But I'm getting closer.
The thing with multiple ailments is that even when they start to ease, whatever you've got left is the most miserable thing you experience. But when I think about it, I'm now on day three after the theoretical lowest point after radiotherapy, and if I'm completely objective, I feel a whole lot brighter than I did three days before it. So I reckon I'm ahead of the curve and on track for resuming normal service by mid- to end October.
It's still heavy going, but it's getting better. The throat is still sore and involuntary swallowing wakes me up every half hour or so through the night, but during the day it is quite manageable with routine pain killers. The fungus is retreating, thanks to two different potions from the GP, and the burning sensation at least isn't constant. The gloopy saliva is still inconvenient, but I notice that I have to spit n' gargle much less frequently than only a few days ago. Picking up a cough over the last couple of days was annoying, but it seems to be a mild infection and is easing now.
But don't count them yet!
Saturday 24 September 2011. ...and closer
One thing that does definitely keep my morale up is to avoid reading the chat on the MacMillan website! Mrs S, who is now definitely more au fait with social networking than I am, signed up to a chat room for people affected by head n' neck cancer and showed me some of the exchanges. I'm sure she gets something out of it, being much more of a social beast than I am, but the couple of items I read depressed the hell out of me; people 18 months or more on from where I am, struggling with stuff I'm hoping to see the back of in the next few weeks.
I was delighted to see my letter to Motor Cycle News on the Letters page in this week's issue. Picking up a touring theme in one of their regular columns, I mention my planned 'bottom-right to top-left' tour and give a link to the blog. What with £165 already donated and all this publicity, I'd better make sure I actually do the ride now!
Recovery continuing, I ate some meat for the first time in I don't know how long last night; a few leftover bits of bacon from Mrs S's stir fry mixed in to my now routine evening omelette.
And after a very nearly solid night's sleep, I tried an experimental breakfast this morning. The routine milkshake, followed by a bowl of cereal and a slice of toast. The cereal was a culinary non-event - couldn't taste them - but as an experiment, it demonstrated that the milk was enough to float the solid bits of cereal down my throat without ill effects. The toast - with peanut butter rather than my usual Marmite - also went down OK-ish, but needed the odd sip of water to supplement the limited flow of saliva.
Back to the milkshakes and omelettes for a bit longer so as to avoid damage, but that's not so bad now I can see an end to it.
Like any road, I find this one much more enjoyable - or at least less arduous - if I make my own way along it without messages coming from assorted Jeremiahs saying 'Ooooh it gets really rough up ahead, you know.'
It's my road. I'll find out what's round the corner, thank you very much.
Monday 3 October 2011. ...and closer still, with the odd minor glitch
Still, there's my big bike ride to aim for, not to mention the increasingly urgent need to whisk Mrs S off to somewhere she can sit in the sun and chill, which gives me the impetus to rest and recuperate. I've skipped a couple of things I was hoping to do about now; a Conference of Magic with Bournemouth Pagans, marshalling a veteran bike rally with the local IAM motorcyclists. A woodland skills course (how to gut a rabbit and make a fire to cook it on) and an introduction to the quarterstaff will almost certainly also be knocked on the head. (Is that a pun, or just an unfortunate choice of expression?)
There's a review with the consultant tomorrow. I'm hoping he'll be impressed with my recovery to date, but it'd also be nice if he could give me something to get the last of this sore throat and mouth out of the way. I've got a soft palate that blisters at the very thought of anything textured. I'm basically sticking to the milk shakes and omelettes until it heals up properly, though with a little water, I've managed to eat a plum or two without harm. (With welcome effects on my digestive system, after weeks and weeks on a fibre-free, milk n' egg diet!)
As the aches and sorenesses recede, one appreciates the real damage done by radiation; it drains you. A moderately intensive work load last week, plus a couple of sessions of helping the girls with their homework - so all brainwork, nothing physical there - sent me tottering to my armchair. I must, as Mrs S keeps telling me, pace myself. That's tricky when you're not by nature an armchair sort of person. It takes a determined effort of will to remain slouched when you look out of the window and see the grass growing and all manner of other tasks adding themselves to the domestic chores list.
A welcome addition to the diet
Friday 6 October 2011. Update
For now, the pills are making inroads on the mushrooms, the sore throat is pretty much gone, and the tenderness in my mouth is getting easier daily. In fact, today, popping in to town on the bike, I felt pretty close to being well enough to set off on the Big Bike Ride. Still, musn't count chickens.
Yesterday, Mrs S and I went to a meeting of the HANDS group - a mutual support group for head and neck cancer sufferers and their carers. There was a bit too much Jeremiahing for my liking, but I did pick up one or two useful tips and techniques for managing some of the after-effects of treatment. Milk with the fish and chips was one memorable one!
The review with the consultant - the consultant and his apprentice, as it turned out - was a bit of a non-event. My throat is still too raw and coated in fungus again to be worth viewing with the nose-cam, so I've got another appointment of a month's time, and a double dose of the anti-fungal pills.
Friday 21 October 2011. I'm back!
The first big step was a bacon and brie panini while out on a bike ride to Bridport last Saturday.
I was so pleased I bought myself another hat to celebrate! (A jolly nice dark brown, snap brim Fedora from Olney; very Richard Hannay!)
But the big test case has always been; can I get a full english down? And a couple of days away to pamper Mrs S in a nice hotel gave me the opportunity. It was a fine dining sort of hotel, so portions were dainty, but it all went down very nicely; sausage, bacon, egg, fried bread, and even black pudding. Toast and cereal, too.
I was grinning from ear to ear all morning, and followed up with a lunch out, and a splendid dinner back at the hotel in the evening.
I've been regarding 'ability to eat normal diet' as the final hurdle before I consider myself fit to do my big ride, and I had tentatively planned to be off tomorrow, but Mrs S is so stressed and worried that I will come to harm that I've decided to put it off for another week or two. I am still very keen to do it before winter sets in rather than next spring - it would be a valuable psychological milestone for me, marking the end of my 'annus horribilis' - so I'll see what [more] I can do to demonstrate to the little lady that I am as fit as a fiddle.
The 'Great Day of Eating' (see entry for 18 August) didn't take place quite as planned, but the sore throat has gone, the fungus is well on the way out, and if you ignore the fact that I take a sip of water with every mouthfull - which is anyway easily dismissed as an idiosyncracy, I think you'd agree I'm pretty much back to normal as far as eating is concerned. (The nausea and tiredness faded away ages ago.)
Bacon and brie in Bridport
Friday 28 October 2011. Don't tell Mrs S, but ...
Last Sunday - supressing a sulk about not being allowed to do my Big Bike Ride - I threw myself into a number of strenuous household chores with more than usual gusto. I thought nothing of it when I found my muscles aching on the next day. Or the day after that.
After four days I started to wonder, especially as the ache was joined by a sensitivity to touch, somewhat like the start of flu but without any coughing or sneezing.
Nearly a week on, it's still there, but I googled around the topic and it turns out that flu-like symptoms are a normal side effect of chemo, and muscle ache even some time after the end of treatment is quite common.
Phew! No need to alarm Mrs S, then. There's nothing nasty brewing, and a constant low-level pain is easily managed. It's just one of those occasionally discordant notes in life's otherwise magnificent symphony.
I can continue to be conspicuously healthy and vigorous in my ongoing attempt to convince the Old Worry Bean that a week of genteel motorcycle touring in fine Autumn weather is not going to kill me.
... there is a small fly in the ointment of my newly refound good health.
Not out of them yet ... but nobody ever is, really.
Tuesday 8 November 2011. Now I'm Dorian Gray's portrait!
I've just been out to get a passport photo to go with my application to be a 'bloodrunner' with SERV, a charitable organisation that delivers blood and other stuff by motorcycle at nights and weekends.
(This will be my replacement Good Citizen bit, now that I'm not allowed to donate blood; I can deliver it instead. And more to the real point, while a ride is always pleasant, a ride with a purpose is even more so, and this will give me frequent excuses to get the bike out for a midnight mission.)
But here's a funny thing. Looking at the photo, I noticed how desperately old I've suddenly become. One eyelid droops, one side of my face is pulled back in a half-grimace, and the underside of my chin looks like I'm starting to turn into a turkey. I'm wondering if SERV will reject me on the grounds that I must have had a stroke
It may be just a step-change in the course of the normal aging process, but I shall quiz the consultant about it at next week's review to see if it is anything to do with the radiotherapy; frying the odd nerve around the side of my head, perhaps...
Well, the previously reported aches and pains have gone away and I'm feeling as fit as a fiddle. But what's this new hell?
Better keep the helmet on when delivering, then.
Thursday 17 November 2011. All clear!
For me, with the certainty of first person knowledge that I was fine, this was no big deal, but Mrs S was understandably over the moon. She was so busy sending text messages to the world and his wife that we didn't even get around to booking our week in the sun until yesterday. We'll be off to Cyprus for a week in a swanky hotel on 30th.
The Big Ride remains my psychological punctuation mark to end this Annus Horribilis.
However, I know the Old Worry Bean is still not happy about it, for all the brave face she puts on.
And anyway,
looking carefully at the travel time and the amount of daylight available at this time of year, I begin to suspect it would all be a bit of an anticlimax to do it now. I've come around to putting the original Big Ride on hold until Spring.
Instead, I'll do a Not So Big Ride as a sort of precursor. It'll be something to put on the blog to keep people interested. See the charity blog for more on that.
I asked the consultant about the Dorian Gray face. The worst of the lop-sidedness had disappeared by then, but I could - and still can - do an impressive wobble with my impending turkey neck. He didn't think it was any big deal, possibly a side effect of radiation, along with a slightly suppressed immune system which causes the recurrent oral thrush.
The session with the consultant last Tuesday went well. He had a fumble around my neck and a very thorough look down my throat with the nose-cam, and all seems well; nothing cancerous detected. I've got a scan next month to be doubly sure, and of course, check ups will continue for five years, but it looks like I'm in the clear.
Happy as a turkey on 26th December.
Thursday 8 December 2011. That's all, folks.
There are minor matters of enduring side effects of the treatment (the dry mouth, mainly), and ongoing monthly check ups, and of course my poor missing molars will never grow back, but on the whole, I deem this journey to be now complete.
The Crab is something that happened sometime off to the left on my personal timeline. It was a bit of a bugger at the time, though it was also life-enhancing in the way it forces a re-evaluation of what one has and a reassessment of one's priorities, but in any case it's over and done with now.
Well, I've done my Little Big Ride - see the charity blog for details - and we've had an excellent week in Cyprus.
