October 8th 2010
déjà vu all over again
I am getting really Ratty first thing in the morning. Perhaps it’s the Warfarin. More than just irritable – a real moany/groany person. Luckily I am married to someone with a good deal of patience – and a sense of humour. This particular morning I am sounding off about the voice “may as well sell all my recording equipment …”, the bike “may as well sell it, I’m never going to ride it …” blah blah – “this is the worst year of my life…..” blah blah. That sort of thing. Annie reminds me that I said similar things when I had to deal with the bag and chemo; “it’s like déjà vu all over again”. Then she falls back on the bed laughing uncontrollably at the joke she’s just made.
Some people seem to live their lives through the movies – life imitating art – I seem to live my life through song: “And now my life has changed in oh so many ways/my independence seems to vanish in the haze”. When Annie first contemplated retirement she wondered how she would fill her days. Now she spends part of each day on the phone – acting as my mouth-piece. I do hate having to ask her; not that she minds – it’s my loss of independence that bothers me.
She discovers that the ENT consultant at MK hospital has not received the letter of referral from Mr S sent out in August. If we make a copy and take it to the hospital straightaway the secretary will see that he gets it. But – we may now have to wait 10 weeks to be seen. This is not good – in his letter Mr S writes “… although I had tried to preserve the recurrent laryngeal nerve at the time of surgery, I suspect this is a permanent injury that is unlikely to recover”. I need to know if this is indeed the case because it will determine the next steps. The secretary suggests going through my GP as an alternative route – but a phone call to the surgery reveals that he’s not had his copies of the referral letters either.
I think about writing a letter to Mr S advising him that none of the letters he has written have reached their intended recipients. I get as far as writing a draft – but it comes out as a general whinge – and that’s not the point I want to make. Everyone is doing their best; people are really nice. But….. There is clearly a ‘systems’ failure somewhere – he could be writing any number of referrals all in good faith – yet none of them reaching their destinations. Or perhaps I’m the only one. I decide to give it more thought.
I have more luck at the Anti-Coagulation clinic. I start on 5mg of Warfarin a day; a blood test on day 5 indicates that I can reduce this dose. I had not realised the complexities of anti-coagulation treatment. The charge nurse takes me through the process. The blood test measures how long it takes the blood to clot. Too fast and there’s risk of a stroke or embolism – too slow and there’s a risk of internal and external bleeding. The test produces a ratio of my blood’s clotting ability to that of an internationally agreed standard (INR). The ratio in a healthy person should be close to 1. As the ratio increases so to does the risk of bleeding. The ideal dose of Warfarin should be, like Goldilocks’ porridge – just right. My target INR is between 2 and 3. My first test results in a value of 3.5. So my dose is lowered to 1mg. Two days later it has dropped to 2.9; I stay on 1mg until the next test. Interestingly it turns out my diet will lower my test results – a lot of what I eat contains vitamin K – green veggies, olive oil, oats – the good stuff. This is good because it means I can get away with a lower dose of the drug.
And then there’s the other stuff – always carrying a yellow card, avoiding anti-inflammatory drugs and aspirin – and alcohol. I dread the “how much do you drink?” question. We all underestimate our consumption I’m sure. I look at the chart and can honestly say I do not exceed the national guidelines. (I don’t – honest). I’m not sure if the charge nurse is convinced – “Warfarin is metabolised in the liver”. Best avoided then?
This brings home to me that a healthy life style is money in the bank when it comes to major illness. It doesn’t always prevent it – but it does help deal with it. Well that’s the theory. There’s bound to be someone out there who smoked 60 fags a day, drank a bottle of whisky every night and lived to 110. Even a primate, Charlie the Chimp has confounded the experts by (recently) dying at the age of 52 – thereby outliving most of his contemporaries by around 10 years – after spending most of his life smoking and drinking. Maybe he tried to give up and failed – perhaps it’s difficult sticking patches to hairy limbs.
There was a television programme in the week featuring a single mother with breast cancer and the financial difficulties she was facing; “People don’t realise how expensive having cancer is”. Quite. She received support in the form of a ‘go-for’ – someone who spent their time dealing with the benefits systems, the banks, sources of other financial help and sources of practical help. The rational behind this initiative is that by taking on this burden the woman was “free to concentrate on her cancer”.
Although this strategy clearly worked in this case, it struck me that there is another take on this. I’m not sure I want to concentrate on my cancer – or at least think about it too much. Sometime the other stuff can be a useful diversion. I didn’t mention ‘cancer’ until the previous paragraph.
And it certainly worked last time. For about 18 months my every free moment was taken up with thinking about the bag – will it leak? Can I find a loo in which to empty it? Can I change it away from home? I forgot I had cancer. And once the bag had been removed for the last time, I spent 2 blissful years free of this disease. Or rather – as it eventually turned out – at least two years free from worrying about it. And if truth be told, I am so much taken up with getting appointments that I’ve hardly spared a thought for what happens if the radiotherapy does not work. That discussion will have to be had at some time – I’ve already been made aware of that. But not yet. Not while there are letters to write and a voice and a heart to mend. Déjà vu all over again.
Reasons to be cheerful No 64a.
In the Spring we bought an apple tree – not a massive orchard tree that would only come into fruit in the next century – but a small step-over type. It’s about 1 foot high and 6 foot long and has produced an apple. The variety is James Grieve. If picked early it’s a cooker – but if left long enough will become an eater. For the past couple of months I have been watching its progress, trying to judge the moment when it makes that magical transition. I finally picked it at the weekend. (And shared it with Annie). It was, in a word – delicious. Quite wonderful in fact. Juicy – and not as tart as a Granny Smith – nor as sweet (and cotton woolly) as a Braeburn. We hope to have one each next year.
Reasons to be cheerful No 64b.
I rode my bike to work this week. There and back – twice.
October 13th 2010
“Well that all seems to be OK – let’s keep our fingers crossed…”
I’m lying on my back, about 5’ or so in the air, under a machine that looks like something out of a science fiction film – at one point it reminds me of the space station from 2001: A Space Odyssey – and at other times, Robbie the Robot.
My arms are stretched out behind my head, gripping a metal bar – in a precise fashion; “left hand over right please”. My head is held securely in what at first sight looks like a blue IKEA shopping bag but turns out to be the head restraint that they made on my first visit. “We’ll raise you up to the machine rather than bring the machine down to you”. Just so we know who’s boss. I feel as if I’m being offered up as some sort of sacrifice to the Machine Deity.
I notice that, as she makes adjustments, the radiologist’s nose is level with, and uncomfortably close to, my armpit. Fortunately I washed under my arms and applied additional deodorant this morning.
With my head in place, the tattoos aligned and the distance between my elbows measure to the millimetre, the lights are switched off and the machine begins a traverse of my chest from right to left. This is a scan to identify the tumour site before beginning the radiotherapy. Having satisfied herself that the machine is calibrated, the radiographer switches the lights back on, leaves the room and I am left alone for the next 18 minutes.
In spite of the millions spent on advanced medical technology, the investment in training and the preparation undertaken by the medical staff, it seems the ability of the death ray to accurately indentify the precise location of my ‘tumour seedlings’ ultimately comes down to a pre-Christian gesture designed to ward off bad spirits. If I could cross my fingers, I would – but should I have to?
I’ve spent much time in the past few years lying patiently on my back while machines of various types photograph my body; from the crude and original, yet still effective, X-ray, to the latest PET/CT scanners. But this is, by far, the strangest. The proximity to the ceiling (compared with lying on a bed, say) and the inability to move my head gives a limited field of view. Straight ahead is the illuminated ceiling; to the sides – in my peripheral vision – it’s dark. The only thing I can come up with that approximates to this, is lying in a pram (not that I’ve done that of late).
And then slowly, a large grey disc rises on my right, like some monstrous monochrome sun and stops above me. Coming from the dark into the light it seems quite sinister. It’s only a foot or so from my head – and appears almost humanoid as the face rotates back and forth scrutinising me. Its work done, it moves off only to be followed at a discrete distance by the death ray itself – a grey rectangular box (what is it with this colour scheme? I know grey is supposed to be the new black. But surely that was last year? Note to self; drop a paint card off on my next visit).
Having found its target (this must be where the finger crossing comes in) the machine begins to blink and whir. Saliva is pooling in the back of my throat and I worry I might start coughing. It suddenly occurs to me – what happens if I move? Will the wrong bits get zapped? I close my eyes, not because I am afraid but in order to concentrate. I give myself something to think about; if the journey to and from Oxford is about 80 miles, and the car does 40mpg how much will it cost in petrol by the time this treatment finishes? The answer is a surprising, and frankly shocking, £200. I resolve to drive more efficiently on the way home.
This appears to do the trick – the saliva stays put and I watch as the disc makes a series of orbits, each time followed by its faithful companion. And then it stops.
Footsteps; “That went very well.” It’s all over – for today. I can’t bring myself to ask precisely what she means. What went very well? And why did we need to keep our fingers crossed?
When I get home there’s a message from MK hospital on the answer phone; my latest blood test shows my INR has dropped to 1.4 – I’ve overshot the target. So my Warfarin goes up to 2mg for the next week. I have to keep it between 2 – 3 for four consecutive weeks before they’ll do the cardioversion. So I’ll be clear of radio by then which suits me.
In the evening I notice that I’m sore down my left side – not from the radiotherapy but from being trussed up like a turkey. Nineteen to go. Which is nice.
October 20th 2010
Down to the Crossroads
Having more than a passing interest in music – performing as opposed to listening – I am familiar with the Faustian bargain struck by Robert Johnson when he met the devil at a crossroads one midnight. In exchange for his soul, Robert Johnson became the greatest blues guitarist ever. Or so the story goes. He might simply have been very, very good anyway. And it might have been a drunk or a tramp he bumped into rather than Old Nick himself. If indeed such a meeting ever took place – perhaps his publicist made the whole thing up.
But the point is – such bargains are commonplace – who hasn’t said, “What I wouldn’t give for…” at some time or another? We all have our crossroads to bear.
As the machine starts up, I close my eyes and drift off – and for the next 18 minutes of solitude under the burning beam, I think about what I would give to have my voice back.
If the bargain put to me was – you can have the voice back but you’ll have to have the cancer back as well – would I take it? Would I take a short but vocally fulfilling life over a long silent one? There are times – when I’m hunched over my guitar playing the chords to old familiar songs and nothing, but nothing comes out – I think maybe I could take that long walk down to the crossroads. Then again – maybe not.
But perhaps my bargain has already been made; one lonely night, back in January 2006 when problems with bowel surgery put me in intensive care, I entered into negotiations to ensure that if I got out of there in one piece (not withstanding a few bits necessarily missing) I would forever be a model of sweet reasonableness. Never a bad word would again pass my lips (maybe I should have read the small print).
The problem with these bargains is that you don’t really know with whom, or with what, you are dealing. I had assumed it was God, but the other feller could have stepped in. And it doesn’t work – far from being someone who, when I walk down the street has song birds on my shoulder and a beatific smile that stops all disputes and arguments within a radius of 500 yards, I have assumed the mantle of, according to my wife, The People’s Grump.
And then – just as quickly as it started – the machine stops and I find myself slowly sinking back to Earth. Hang on – I haven’t finished yet …
I am now an ‘old hand’. On my first visit to the Radiotherapy dept a few weeks ago –for my assessment – I sat in the waiting room and noticed that when some people came in they spoke to the receptionist and then sat down near me, while others came in, went over to a computer screen, scanned something and then went off somewhere. I looked at these people in awe – who were they, where were they going? They obviously knew something I didn’t. Then when I turned up for my first session I was given a card imprinted with a barcode and shown how to sign myself in, after which I was taken to a small waiting area outside Varian 1 (my machine). On future sessions I would be allowed to sign myself in and then go directly to the Varian 1 waiting area. No asking or putting my hand up.
So today as I walk in to the main waiting room I notice it’s full – people look up as I stride purposefully to the computer and sign myself in. Then – I’m gone. I don’t turn around but I can sense the awe.
When I arrive outside Varian 1 they’re running late. I have no reading material but there’s a newspaper, folded over on a table. I pick it up and as it falls open immediately facing me is ‘Radiotherapy causes blood clots’. According to this article, with the doses typically used in radiotherapy, the risk of blood clots significantly increases. And if that wasn’t enough – the unit of radiation is called the Gray. Which no doubt explains the colour scheme (see Oct 13th). I mention it to the radiologist – she laughs, “if it’s in the Telegraph or the Daily Mail then don’t believe it”. (It’s the Telegraph) So that’s a comfort.
I decide that perhaps I’ve been a bit unfair to Varian 1 – calling it the Death Ray – especially as we’re now on first name terms. We even exchange phone numbers. And what a name – could be the first in a line of Roman emperors or something out of StarTrek. When I lie under his gaze, Varian 1 is really a Life Ray.
In the car on the long drive home I pass numerous crossroads – can it be any intersection or is there a particular crossroads where bargains are made? It’s all stuff and nonsense I hear you say – well, maybe – but try telling that to the dyslexic Elf who inadvertently sold his soul to Santa.
October 31st 2010
It comes on suddenly – so suddenly that I don’t really know what it is. It’s about a week ago and I’m sitting on a sofa reading the paper and I eat a piece of chocolate. Nothing fancy, just a piece of good old Dairy Milk. (I have long considered the seed of the cocoa tree – and its derivatives – part of my 5 a day). It seems to stick in my throat. After a while it goes but as I go to bed that night I’m left with a nagging, snagging sensation in my gullet.
By morning it’s still there. It’s painful to swallow and I Google Radiotherapy+Lung+side effects. Two clicks and I find the following; The oesophagus can also become sore if it is treated directly, or if, as commonly occurs, it receives a dose of collateral radiation during treatment of lung cancer.
Another site says to expect this about 2 to 3 weeks into treatment; This soreness can start quite suddenly, which can be a bit alarming for you. I’m relieved to read that I’m not the only person to be alarmed – and a little astonished at the accuracy; when I would be likely to experience this, how quickly it would be felt and just how I would feel about it.
As the day wears on it gets worse. Annie realizes it’s serious when I leave my coffee untouched. Eating and drinking become incredibly painful – to the extent I more or less give up. I try sipping a mug of water. Progress is slow – it takes a whole episode of Shaun the Sheep to finish it off.
Radiotherapy works by interfering with the DNA of cancer cells. This is surgery at the molecular level – and as I lie under Varian 1 I marvel at the technology – and the fact that it’s free. En route to Oxford I tune in to a play on the car radio. It’s a serial set in America – the part I hear is about a man counting the financial cost of his wife’s – apparently not wholly successful – cancer treatment. His savings are rapidly dwindling and the bill for her last chemotherapy treatment was $40,000 (his health insurance won’t cover the cost). As I pull in to the hospital car park he’s trying to decide if he should keep paying out for what he sees are diminishing returns. I never get to find out if he resolves this conflict. I can’t imagine having to make that sort of decision. It puts my moans about the cost of getting here into perspective. I give Varian 1 a nod of thanks as we finish. Thank you NHS.
I tell the radiographer about the swallowing and chest pains and she calls a doctor. I’m prescribed Sucralfate (used for treating ulcers in the digestive system.) This comes in the form of a pill about the size of a pillow. How am I supposed to get this down when I can’t swallow? I wonder if Annie took the prescription to a Vet rather than a Pharmacist. It’s uncoated and starts to disintegrate at the back of my throat. Reflexes kick in and it ends up in the sink. As I watch it slowly dissolve it occurs to me that the only way I’m going to manage this is to dissolve it in a little water. So 4 times a day I perform a little ritual – swill and swig, swill and swig. Sometimes it goes down without a murmur, at other times, it goes down protesting.
Most of the collateral damage seems to be restricted to the oesophagus. I was advised, before I started treatment, to apply E45 cream to my chest and back every night. This seems to have done the trick – I just look as if I’ve caught the sun rather than having a Tango Tan.
But I am tired. For the first 2 weeks I drove myself, but now Annie is taking me. The fatigue also kicked in quickly. I heard a nurse tell a patient; you’ll actually feel worse in the 2 weeks following the end of your treatment – you’ll be back to normal in about 4 weeks.
We were meant to be in Paris this weekend, but decided we should cancel it. It would have been no picnic. Or déjeuner sur l’herbes. To paraphrase John Lennon; Cancer is what happens when you’re busy making other plans.
As I write this I have 6 more sessions left and then I can tick this particular box.
Reasons to be cheerful number 124.
I’ve had to find a detour for my daily drive – the main road between Buckingham and Bicester is closed for the next 3 weeks. My new route takes me through Lark Rise country; the area where the Oxfordshire, Northamptonshire and Buckinghamshire borders meet, immortalised by Flora Thompson in Lark Rise to Candleford.
In the autumn sun it’s quite beautiful. There’s a stretch of road, straight and narrow and bounded on either side by a solid wall of hedgerow and trees. As I drive through it’s like the parting of the Red (and Golden) Sea.