Bowel Cancer and Me
Created | Updated May 17, 2004
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13 May 2003
Out there, we've walked quite friendly up to Death;
Sat down and eaten with him, cool and bland ...
We've sniff'd the green thick odour of his breath ...
We chorused when he sang aloft;m
We whistled while he shaved us with his scythe.
Oh, Death was never enemy of ours!
We laughed with him, we leagued with him, old chum.
- Wilfred Owen
Rather a grim opening, I know, but I wouldn't mind betting that anyone who's just been told they have cancer probably hears, somewhere in the background, the swish of a scythe, and glimpses out of the corner of their eye a black-cloaked figure scurrying busily around. Then laughs it off, of course.
Cancer: something that happens to other people. In this case, the other person is me. Initial examination shows just the one beastie, quite low down in the colon. But when they cut out that bit of gut and try to join the two ends together they might get a better idea of how invasive (or not, as the case may be) it is.
I'd been experiencing what the doctors call a change of bowel habit. This was a frequent and very urgent desire to go, but when I did go all I could manage was a very small stool and some wind. Great, huge relief, as though I'd taken the most enormous dump. Half an hour to an hour later, same thing all over again. But if I tried to resist the urge, or simply couldn't get to a toilet in time, it could be anything from extreme discomfort followed by an obnoxious effluvium and some soiling of underwear, to an uncontrollable disaster in a public place. As they say, in this condition, when you gotta go, YOU GOTTA GO ... there's no two ways about it.
Of course one of the things about the bowel is that it's such an emotional centre. Think of all the common phrases we have associated with it: gut-wrenching, gutted, gut feeling, gutsy, gutless, a visceral experience, the bowels of the earth, bowels of compassion, anal retentive, all the various phrases involving the sh*t word. Now we're getting to the bottom of it.
And that particular function of defecation we really want to happen at a time and place of our choosing, to be efficiently performed, and sweetly, cleanly, sociably and discreetly managed. When the experience is instead difficult, and messy, and smelly (not to mention very frequent), a certain amount of self-disgust and even self-loathing comes into it. It isn't so easy to retain your personal sense of your own worth - whatever that might be - while you are failing to control your bowels. That makes it particularly hard to talk about. In any case, it's not exactly the ideal topic for light dinner-party conversation.
So I went along to a gastrointestinal person and they did an initial exam, sticking various instruments a short way up through my rectum, but couldn't really tell very much, or at least weren't saying very much. It must have been something like stirring thick pea soup. Then I went back for a proper colonoscopy. This involved fasting from the day before and, also the day before, taking a powerful laxative to completely empty and wash out the bowel. The fasting and emptying out felt really good. Then, with the patient under sedation, in they go with the fibre optics, wiggling the camera around the various bends of the colon, and getting the full picture up on a large screen. It wasn't actually a particularly painful or uncomfortable experience, drugged up to the eyeballs as I was.
Later came the chat with my Consultant. By that time my wife had arrived. Before then I had already had quite a long chat with the Registrar (the Consultant's second-in-command) about what they had found and where we go from here. After the operation I'll be fitted with a bag as a temporary measure. Except that they don't yet know whether or not they'll be able to join up the two ends of the cut bowel properly, in which case the bag might have to be permanent. A-ha. Or maybe not.
We go in to see the Consultant and the door closes discreetly behind us. He did a very good job of being explanatory, not unduly pessimistic, but not making any promises either. We'll have to wait and see. My wife and I are very happily married, and as the consultant was talking I could see out of the corner of my eye her face gradually crumple more and more, as some of the implications of what he was saying began to hit right home. Nevertheless she maintained her composure and even managed to rustle up a couple of intelligent questions when it came to it. I had been expecting the outcome (though still haven't realised the full implications of it all) so I wasn't too surprised or shocked (I was still sedated, of course), but at that moment I just wanted out of there, and desperately wanted to be alone with her.
Next up will be a CT scan. A quick google tells me that this is Computerised Tomography. Sometimes called a CAT scan, for Computed Axial Tomography. I suppose this will help them decide whether it's worth doing some surgery or whether I'm too far gone for them to bother.
So the whole thing could turn out to be a series of steps and stages. Waiting for results, some procedure or treatment perhaps carried out based on that, assessing the outcome of that, and so on.
Anyway, I'll post my jottings here from time to time, as long as I have the ability and the inclination. I'll try and arrange things so that if I do stop posting for a long time, someone else might be able to explain the situation.
There looks to be some good information from a UK perspective at http://www.cancerbacup.org.uk/info/colon.htm/ - I'm off to check it out. As I've found out in the past, you have to be very careful about medical articles on the web - they can easily be inaccurate or out-of-date.
15 May 2003
Learning to be a spin-doctor. Family conference, meeting of inner cabinet to discuss news management issues. Who to be told what (if anything), and when and how. Odd how important this has turned out to be - who'd have thought it? - and what a relief that a suitable policy has been worked out. Well, sort of worked out, anyway.
16 May 2003
Patient-medics liaison issues. Mike, a specialist nurse, has been assigned. Mike is organising and co-ordinating for me. He's like my agent. Flurries of phone calls have fixed up CT Scan for Mon in time to see Consultant on Tues to discuss results. Another moment of truth approaches!
19 May 2003
Went for CT scan. This is part of a whole area called Diagnostic Imaging, and to get to CT you have to walk down corridors past X-ray, Mammography, other depts I can't remember, something called Nuclear (what the hell is that?), and MRI. It's like a large spaceship - bare and functional, with a low purposeful hum of equipment, and occasional signs warning of radiation hazards. Sets of large doors leading into mysterious rooms have coloured warning lights, and signs saying things like 'Do not enter when red light is on. Radiation hazard.'
A few people stride purposefully along, some in grey-green surgical gowns, others in shirtsleeves and stethoscopes. Strangely, I don't see any white coats here. I arrive at CT and am given a measured quantity of foul-tasting clear solution to drink, and told that if I want to empty my bladder it has to be within the next ten minutes. The drink is meant to percolate through and show up my nether regions when it comes to scanning. I have to wait for an hour while nature takes its course.
I get undressed in a changing-room and slip on a gown. In the CT room the nurse puts a line into a vein on the back of my hand. This is so that they can inject a dye into it, again to show up on the scan. But not yet: the dye will be injected later by remote control. I just have to lie on a hard bed. rest both of my arms up over my head, and follow the instructions.
The bed moves slowly along horizontally past the electronic eyes. Back, and forth, and back again, and stop, and back some more, and stop, and forward, and so on in a seemingly random way. From time to time instructions come through a small loudspeaker nearby: Take a deep breath. Breathe normally. Breathe in and hold your breath. Breathe normally... etc as the bed moves slowly back and forth. At one point I am warned they are going to inject the dye, which will make my throat feel funny. No change in way throat feels. Did the injection fail? Have I done something wrong?
I don't actually know how long this has been going on, but it feels way too long. Eventually it is over and I can go. By this time I am feeling incredibly stressed. This doesn't make sense, because I have just been lying on a bed and breathing - that shouldn't be too stressful, should it? But for some reason I am so wound up about it that I'm just glad there's nobody around to ask me how I am or how did it go, because if anyone did at that point I would probably just strangle them.
By this time it was mid-afternoon and of course I hadn't eaten, so I went off and found a little greasy cafe still open and had a quick lunch. Home-made steak and kidney pie, with chips. Really greasy chips. Comfort food. Boy, I needed that.
20 May 2003
Interview with Consultant to discuss CT results. I knew all was not well as he started by asking me questions about my symptoms, like whether I had to get up during the night, what sort of leakage problems I had, and so on. This wasn't how things were supposed to go.
The long and short of it is that the CT scan showed that the cancer has spread. There are secondaries in the liver, maybe elsewhere too. Surgery to remove the bowel tumour would be a major operation to undergo and wouldn't cure anything. He was trying to suggest that if my symptoms aren't too bad it would be best just to live with them.
Chemotherapy can be used to zap the tumours as much as possible, to give me some extra time and perhaps a reasonable quality of life for a while longer - perhaps even up to five years. If I respond well to the chemotherapy and it shrinks the tumours, he held out the possibility of bowel surgery at a later date. If I don't respond well to the chemotherapy, clearly five years is going to look like a very optimistic assessment. It could be anything from maybe a year down to a few months.
So the bottom line is that I am, in effect, incurable, and all they can do is keep me going for however long they can. When chemo starts to produce diminishing returns, I'll just be on palliative therapy to keep me as comfortable as possible till the end.
It seems that I've travelled a million miles in the past week. Before then I was just a bit unwell. Now I have incurable cancer.
I'm not doing a lot of web surfing on cancer at the moment - just reading some leaflets and looking at one or two respected sites. One of these is the Royal Marsden, a major UK centre of excellence and cancer research. This tells me that although a significant proportion of tumours of the gastro-intestinal tract are curable by surgery with or without chemotherapy or radiotherapy, 50-70% of patients relapse or have disease too advanced at presentation to be cured. That's a huge proportion, so perhaps it's not surprising that I fall within that category.
And although primary liver cancer is rare in Western Europe and the USA, with an incidence of 1-2 per 100,000 population, secondaries occur in approximately 25% of all patients with cancer. They can arise from any primary tumour, but are particularly common in cancers of the gastro-intestinal tract. They mostly have no symptoms, so can have become extensive prior to diagnosis.
Until today I was assuming that I would be having some major surgery, so I started arranging my life accordingly, telling people I would be in hospital for a while, arranging for bills to be paid while I was away - all sorts of things like that. Now it seems that I'm more likely to be home-based for the moment, so that alters the picture quite a bit.
Also, not knowing - even roughly - how long I've got causes some problems. I mean, if I knew I was going to pop off within, say, six months, there are certain major arrangements I would make which would be inappropriate, or at least unnecessary major upheavals at this stage, if I was likely to live for, say, another six years. I'm talking financial, property, things like that. So if only for that sort of reason, I'll be quite keen to monitor the progress of the treatment. Much as I might fear hearing it, it's really important to me to hear the news as soon as possible, especially if it's bad news. Keeping bad news from me, however well-intentioned, would be cruel and not kind. I think the wonderful people I'm lucky enough to have around me already know this, but don't worry - I'll keep telling 'em.
I now have to go and see a consultant oncologist to discuss therapy options.
22 May 2003
Of course I was starting from a very low baseline, but nevertheless today things started looking a bit more cheerful. Well it's all relative. In fact, once you've got over the initial shock of the dreaded C-word heralding the day of doom, and start to look around, you soon come to recognise the truth of the old adage that there is always someone worse off than yourself.
Today I had a long and interesting consultation with a consultant oncologist. This is a specialist in treatment by chemotherapy, radiotherapy and so on. I suppose it's rather like a general in a war, having detailed knowledge of all the different forces and weapons at his command, and the skill and experience to know how best to deploy them, and what tradeoffs are involved in aiming for maximum therapeutic effect while minimising unwanted side-effects.
The approach adopted by this particular consultant was as holistic as I have ever encountered from any complementary, let alone allopathic, practitioner. We first spent much time discussing my general health, lifestyle and other such getting-to-know-you factors. I asked to see my CT scans, which he had obviously already reviewed in detail, and which we now viewed together on the screen as he talked me through them. I could clearly see the dark splodges that represented the secondary tumours on my liver, as well as other interesting views of my insides. (These scans are pictures of a series of cross-sections through the various tissues and organs, taken as the scanner slowly moves along the body. I've seen ultrasonic scans of my unborn babies before, but these particular pictures, though I say so myself, were also most impressive!) It was important to me to see with my own eyes the clear evidence of these secondary tumours, because of course there are no symptoms and this dispelled any nagging doubts. He also gave me a physical examination.
We then went on to review various possible treatment scenarios. The chief constraint is that these liver secondaries, unless completely destroyed, will always be a problem. But since they are inoperable they can never be completely destroyed. He seemed to feel, however, that I am young enough and fit enough and well enough to be able to take quite a lot of punishment in the process of reducing my tumours. I naturally took this as a compliment, backhanded though it is.
He doesn't regard me as being ill, you see, but as a well person who happens to have these tumours. What a great way to look at things. Up to now I'd been thinking I was ill. Silly me.
In my case, in addition to chemotherapy, which is basically administering powerful drugs that can knock some of the stuffing out of malignant tumours, he's proposing to use some radiotherapy. While chemo is a generalised sort of approach that goes around the body looking for tumours to hit, radio is very much a focused and targeted device. It's bombardment with intense radiation in a comparatively small and precisely defined area. The target, in this case, being the bowel tumour which, fairly unusually for bowel tumours, he thinks is susceptible in my case to radiotherapy because of its type and location.
Of course it still remains to be seen how well or otherwise I'll respond to these therapies. I might not respond at all, or only poorly, in which case I'll have been through some quite severe and extended punishment for little or no benefit. But there's quite a good chance of a good, or at least a reasonable, response, which should result in giving me a 'higher quality of life' and maybe a bit of extra time on the planet. I'll drink to that.
So he's going to work out for me a detailed battle plan, and he tells me I'm going to be pretty busy for the next several weeks. That sounds ominous.
But, on reflection, it does make more sense than going straight into bowel surgery. I could probably do that if I really wanted to. But my particular lifestyle at the moment is such that to some extent I can accommodate my lifestyle to my symptoms, and I can also to some extent control my present symptoms with medication. It is probably going to mean giving up certain activities, at least for the time being - but then again, having surgery would also mean that.
In terms of how I'm going to feel from day to day in the shorter term, both options are going to result in pain, or fatigue, or nausea, or exhaustion, all that sort of thing, so there seems to be little to choose between them in that regard.
I could of course refuse all treatment at this point, and just let nature go its own sweet way, but I don't think many people in my position would want to do that (though I can see that some might), and I haven't even given it more than a fleeting thought.
2 June 2003
I've been shown round a specialised Cancer Centre. It is a very high tech and apparently state-of-the-art centre of excellence. Not particularly convenient for me to get to or - more significantly - drive home from after treatment, but I was most impressed and will be getting some treatment there.
It's like a theme park, really. It should have a sign saying 'Welcome to Tumourworld - the Magic Onco-Kingdom' or something. Within the complex is a Scanner Centre bristling with all sorts of weird machinery. You want some Positron Emission Tomography? Come to PETs Corner! There's also a Cancer Centre, a Chemotherapy Centre and of course a Hospice with a Palliative Care Centre attached, for those on the last leg of the journey. There's a centre for complementary therapies, there's counselling, there's a drop-in centre with a library and reference section. And then there are various ancillary services on site. Resident engineers to keep all the machines running sweetly; specialised pharmacists; people who make the made-to-measure devices that some people need for radiotherapy; and all sorts of other people with very strange and specialised job descriptions.
So I went in for some treatment and got tattooed. This is to do with preparing for radiotherapy on my bowel tumour. They have to get a precise fix on where it is, so that they can target just the tumour and not the healthy tissues surrounding it. So I had another CT scan, during which they kept calling out various numbers and co-ordinates, and finally tattooed my rear end with indelible markings, which they'll use in subsequent treatment sessions. As if it wasn't beautiful enough already.
Another thing you find at Tumourworld is patients. There is something that strikes you immediately when you first see a number of cancer patients in one place, and it's this: they don't really look any different to you or me. Their foreheads are not branded. Honestly, it can _feel_ so different being a cancer patient that it's really hard to remember, sometimes, that you don't necessarily look any different. Because by the time you have received a cancer diagnosis, especially one like mine, you have crossed, like it or not, a dividing-line. You have gained the entrée to an exclusive club (but not all _that_ exclusive, mind you!). Apart from anything else, you have now become the sort of person who spends a lot of their time at places like Tumourworld, for example. It does become a part of your identity, if not in your own perception then certainly in the perception of other people. And sometimes in very subtle ways.
But enough of this philosophising. My next ride at the Tumourworld Kingdom was the MRI roller-coaster. This is, of course, really another kind of scan. This is the one where you are sent into a long tunnel and have to lie there for about 40 minutes while being bombarded with magnetic fields.
First they gave me an injection in my thigh to stop the peristalsis. This is the normal involuntary constriction and relaxation of the intestinal muscles, which usually goes on all the time. They wanted my intestines to be absolutely still so as not to fog the picture. As it happens, this made things particularly comfortable for me, so I was well pleased. The whole MRI ride was for me much nicer and more relaxing than the CT scan experience. After CT I tend to feel really stressed out and need to rest and recuperate a while.
MRI is very noisy. You can bring a personal stereo and have that playing as you lie there, but I hadn't brought mine so they gave me a choice of music to put on - quite a wide choice, too - and played it through headphones. It really helped, even though the music I chose turned out to be lousy. MRI can also clearly be quite distressing for some people. I know this because they gave me a distress call thingy to press if I ever needed to. Which I didn't. It got rather warm in that tunnel, but apart from that I was fine. But I guess some people get claustrophobia. Or moving along that narrow tunnel might trigger re-experiencing their own birth trauma.
11 June 2003
On my next trip to Tumourworld I spent the whole day at the Chemotherapy Pavilion. As most people know, chemo is drugs. There are over 50 different drugs used in cancer treatment, and sometimes you get combinations of drugs. Add to that the different dosages and different time periods over which these drugs might be administered, and you begin to realise that if someone says they are on chemotherapy that's about as informative as saying they have a car.
These drugs are cytotoxic - poisonous to living cells. The idea, however, is that they attack cancer cells more than healthy cells, and that any healthy cells that do get zapped by the chemo will be able to repair themselves without too much hassle.
First of all I had a blood test to see if I was healthy enough to withstand the treatment. Most of the blood counts they get within a minute or two, while-u-wait, but since this was my first visit they also had to send a sample off to the lab for a further test to make sure my body will be able to get rid of the toxicity via the kidneys and the urine, otherwise it could build up inside me. So that test took rather longer to come back.
Meanwhile I had a consultation with a specialist nurse, mostly about side effects and what to do about them. Also a warning about using a condom for sex during chemo, to prevent toxic substances being passed across. You have to do that whichever partner is having the chemo.
Contrary to popular belief, not all chemo treatments cause hair loss. There's a whole long list of possible side effects and how to deal with them, but the main ones are nausea/vomiting, constipation/diarrhoea, and the biggie - tiredness. Fatigue is the side effect that most people find the most difficult to cope with. It isn't just feeling sleepy, it's a sort of lethargy and weariness on both a physical and mental level, so that things are physically much more of an effort while at the same time your attention span is reduced and you can find it very hard to concentrate. Extra sleep doesn't necessarily help, and in any case you might not be able to get it so easily because of another possible side effect - insomnia!
It's partly to do with the fact that the chemo can reduce the red blood cell count, to an extent starving the brain of its nourishment. It can also reduce the white blood cells, leaving you more vulnerable to infections. So people on chemo have to be very attentive to any signs of infection - eg raised temperature - and seek medical attention (antibiotics) right away rather than waiting till morning. It can also reduce the platelet count, making it more difficult for the blood to clot naturally, leaving the patient vulnerable to bruising and bleeding.
Side effects can appear at different stages during the treatment period. Some might appear initially, then perhaps tail off. Others might appear later, and gradually get worse. Some of them can be expected to continue for some time after a period of treatment has ended.
The Chemo Pavilion is no 90-second white-knuckle experience. For many it's a long, long ride, taking hours. This is because after all the checks and chats and stuff, your drug prescription has to be individually ordered from the on-site pharmacy, made up, checked, sent over to your nurse, and checked again. Then you have to be rounded up from wherever you've wandered off to meanwhile, and sorted out for the treatment. (Actually I leave my mobile phone number at reception so they can call me even if I've left the site.) And the treatment itself can take a long time, because the drugs are often administered via a drip into a vein. The whole thing is a bit like a visit to an expensive hairdressing salon, possibly culminating in several hours spent under the drier.
Anyway, after the chat with nurse Ian it was time for the chat with my Dr Onco, as I shall call him. At this point came the good news. I won't be having drips, I won't need injections. I'm to have tablets, which I can easily take myself at home. No daily slogs on drips in the chemo kingdom for me - yippee! The drug I'm getting is called Capecitabine (brand name Xeloda), and I just take the tablets twice a day (12 hours apart) every day for two weeks, then nothing for a week, then the cycle starts again. So I only need to make the trip for chemo once every three weeks. This is great news.
Onco is very enthusiastic about capecitabine. We had quite a chat about it. He told me he's been working with it since 1995 with excellent results. He did some research on it himself in the early years and found that it resulted in between four and eight times the concentration in cancer cells as in normal cells (depending on the individual patient). In other words, it tends to make a beeline for the cancer and bed itself down there and leave the rest alone - relatively speaking. Consequently the side effects are greatly reduced.
He told me that he is so enthusiastic about this drug that whenever it crops up in the media they tend to 'wheel him out' (as he put it) to be interviewed about it. I told him I'd watch out for him. As it happens, there was a big splash on this drug in the British press just a week or two earlier, and I had seen some articles on it, so for some reason it's big here just at the moment. I've forgotten why, however, since when I was reading about it, it sounded so good that I naturally assumed that it wouldn't be appropriate for me, it was only for other, luckier, people. So there you go.
When they first discovered my bowel tumour there was some idle talk of possible surgery, then I had some scans and they discovered the secondaries on my liver. Now if I had gone in for surgery at the time it would have meant that the liver tumours couldn't be treated at all for something like three months, which obviously isn't a brilliant scenario. Having the chemo now will start to treat the liver secondaries as well as the bowel primary, so this is at least encouraging.
Of course part of the reason for this consultation with Dr Onco is to get me to sign a consent form for the chemo treatment. We had been chatting away about this and that (as one naturally does when meeting with a consultant oncologist in a clinical setting), when he asked me,
'You're not a lawyer, are you?'
I told him I wasn't.
'In any case,' he said, 'the consent form isn't a legal document'.
'Oh good,' I replied, tongue in cheek, 'so even if I sign the form I can still sue you, then?'
'Oh yes, of course,' he laughed.
I signed it and gave it back to him and he countersigned it. 'By the way,' I said, 'did you notice that I signed it "Faust"?' [It does sometimes feel at such times that I'm signing my soul away.]
He chuckled, swept up the form and his other papers, and went off whistling merrily.
In due course my final blood result came through OK and the on-site pharmacy sent my package of drugs over. It seems that no-one on chemo just gets a simple treatment. People get given goody-bags with all sorts of stuff. Other drugs to take for the side effects of the chemo. More drugs to counter the side effects of the drugs you take for side effects. Home injection kits. Steroids. Possibly all sorts of other stuff - incontinence pads, wigs, and goodness knows what else. Some of the regimens of which drugs to take, what dosage, and how often, and on which days, and so on, are really complicated, and could be pretty difficult to follow, especially if you are feeling woozy anyhow.
As you might expect with my wonder-drug I didn't do too badly. Apart from the chemo itself I just got something to take for nausea and something for diarrhoea. As it happens, the drug they gave me for diarrhoea - loperamide - is one I had been getting myself over-the-counter, not actually for diarrhoea but simply to suppress my bowel symptom for long enough for me to be away from home for a few hours. Like coming to the h2g2 summer meet at the pub and getting home again in a reasonable condition.
I'm allowed alcohol, by the way, you'll be pleased to know, in reasonable quantity. But apparently beer and wine are less likely to cause nausea than drinking spirits, so spirits are not recommended. Pity about that - I have some excellent single malts at home.
So off I went with my goody-bag and promised to come back in three weeks. But as it turned out, I was back at Tumourworld much sooner than that.
June/July 2003
I've been meaning to write about my radiotherapy experience but have put off doing so because I don't find it very easy to describe. There are two reasons for this. One is the fact that the equipment moves around quite a lot during the treatment session in ways that are hard to put into words; and the other is that the position I am in at the time gives me very limited visibility so it's hard at first to know what's going on.
I've been surfing around for a link to a reasonable set of pictures of the equipment, but haven't come across any yet. Those I have found so far are a) much too small, b) not nearly detailed enough and c) not necessarily of the same make and model of machine they've been using for me, so a bit different in appearance, which doesn't help. The machine is actually called a Linear Accelerator, but machines called that seem to be used for all sorts of purposes that are little to do with radiotherapy treatment for cancer patients, so I'm a bit confused.
Anyway, I have a treatment every day Mon-Fri at the moment, so having had a few I'm beginnning to get some idea of what's going on. Before the treatments proper began, I had a session on a simulator which, rather like a flight simulator, reproduces exactly what will happen during a live treatment session. This is so that the radiographers can check that everything will go according to plan.
It's all very high tech, and the treatment plan will have been worked out with the aid of computers so as to target the radiation on the tumour, the whole tumour and nothing but the tumour, so help me God - within certain tolerances, I suppose. The radiation with which the tumour is to be bombarded is apparently an intensified form of X-ray, and I won't feel a thing and it won't make me radio-active. The treatment plan will of course specify the intensity and duration of radiation to be applied, as well as the area or areas to be targeted.
What I did feel was the absolutely disgusting taste of the barium drink they gave me before the simulator session. It was a creamy white concoction and needed chasing down with large quantities of water to try to get rid of the appalling taste. Fortunately that appetiser seems to have been a one-off just for the simulator's benefit, and I haven't been given it since.
The treatment room itself seems surprisingly empty when you first go in. There's a table, of course, for the patient. The equipment seems to consist of what I might as well call a computer-coloured (light beige) vertical column some way off, with a large dial half-way up it and what looks like some kind of projection at the top.
I remove my shoes and nether garments and lie face down on the table, with my arms folded round the top of my head and my left cheek resting on a firm pillow. (By the way, fellas, it's an extremely good idea at this point to ensure that your manly bits are disposed downwards towards your thighs rather than upwards towards your sixpack. Otherwise they get irradiated. Which makes them sore. Believe me, this is a tip worth remembering.)
I am urged to remain as still as possible, so apart from an excellent view of my right upper arm I can see very little, and that only with such peripheral vision as is left to me. The table I am lying on is moved into position. As well as moving fore and aft horizontally it also swivels horizontally and of course there is a vertical height adjustment too, so in the hands of an enthusiastic operator it can be quite a ride.
There seem to be at least two radiographers in attendance for each session, and I somehow get the impression that there is a pecking order, a junior and a senior. Funny how you latch on to things like that. Once they've got the table right, they start to adjust me. Just gently shifting my position ever so slightly. I feel fingers touching my rump: they are sometimes warm and sometimes cold. I tend to prefer the cold ones, because it's quite warm in the room. Sometimes they seem to be making some marks on that area with a pen. X marks the spot.
It's all rather pleasant, I must admit, and puts me in mind of those old Victorian drawing-room ballads, the Indian Love Lyrics by Laurence Hope, set to music by Amy Woodforde-Finden; and particularly the 'Kashmiri Song' -
Pale hands I loved beside the Shalimar,
Where are you now? Who lies beneath your spell?
Whom do you lead on Rapture's roadway, far,
Before you agonise them in farewell?
Of course I can't actually see whether the particular hands beneath whose spell I lie are pale or dusky, but no matter. Is that a faint scent of the roses of Isfahan, or the jasmines of Mossoul wafted on a delicate breeze - or just the woody notes of my underarm Givenchy? Whatever, I give myself up happily to the gentle touch sensations and imagine myself dwelling on a cool lakeside somewhere just out of Srinagar.
Meanwhile a mysterious conversation is going on, sotto voce:
'Seven point three...'
'Right, so that's 22 then...'
'Nine right...'
- and so forth.
During the session I'm vaguely aware of a lighting display, with the room lights being switched on an off at different times, and machine lights coming on sometimes. Anyway, once they have me where they want me, if you see what I mean, I'm told to lie very still now, and I guess that they leave the room and retire behind lead shields and concrete barricades to run the machine.
The machine starts whirring and humming, and sometimes it seems from where I am lying as though the walls and ceiling are closing in on me. What's actually happening, I have since discovered, is that when the radiation machine, the linear accelerator, gets going it puts out tentacles. Telescopic arms emerge and encircle me. The whole structure seems to gyrate and revolve around me. I get three shots of radiation, each in a different position - right side, centre, and left side. They are quite right, I don't feel a thing.
Among the various whirrings and buzzings and hummings of the machine it sometimes makes a short sound just like a telephone ringing. I find out later that it isn't the machine at all. It's the phone in the control room that also rings in the machine room. Duh. Mind you, it always seems to get answered after one short ring.
I get chatting to a senior radiographer and start telling her about this site and what I am doing here. I mention that I'm writing about my experience partly because I found so many people, myself above all, ignorant about even the basics of cancer and cancer treatment, in spite of the fact that almost everyone will at some stage know of someone with cancer. She's very interested. She tells me how sometimes cancer or radiotherapy crops up in the storyline of a TV soap, and how they always seem to get it wrong, in her eyes, misrepresent it, and give people an entirely wrong idea. So much so, apparently, that after some soap episodes mentioning the subject she can get patients ringing up to cancel their treatments. She told me how she once had a TV producer as a patient, and spent a lot of time trying to persuade him to put on a really accurate and informative documentary about it.
Oh, by the way, having started the radiotherapy my chemotherapy regimen has been changed slightly, to fit in with the radiotherapy. Apparently the two therapies really potentiate each other and work well together. The treatment plan at the moment is to run both in tandem for a total of five weeks, then have a complete rest from these treatments for six weeks. During the time the radiotherapy continues to work. I guess after that six-week period I'll be having another scan and we'll see how things are at that stage. By that time I calculate we'll be virtually into October.
By the way, I came across a statistic recently - for my cancer situation the five-year survival rate is less than ten per cent. Just so you know what we're talking about here.
13 July 2003
Having just re-read that last paragraph, and from the interesting discussion it has prompted over on the discussion thread, I realise that although I knew perfectly well what I meant, no one else did. Anyway, it's like this, sort of, if I can get my thoughts in order.
As we go through life we make various decisions, short-term decisions and longer-term decisions, which to some extent we base - consciously or unconsciously - on assumptions we make about the future. Do we commit to this relationship, decide to have children, go in for a mortgage, apply for that job, join a pension scheme, travel round the world, etc etc.
Now we all know that we could be run over by a bus tomorrow, be murdered by an axeman breaking into our house at night, be killed in a train crash or something. All these are possibilities, but most of us, when making long-term decisions, decide these are not worth very serious consideration. Of course, we will maybe get the insurance policies just in case - or maybe we just take our chances.
Most of us don't organise our lives around these remote possibilities which could happen but probably won't. But how do we know they probably won't? Statistics! So whether we realise it or not, we do make decisions having regard to the statistics. It's the only rational thing to do. The chances are the statistics will come out for us pretty much as we thought, and as far as possible we cover the remoter possibilities, but not to the extent of making our present lives a misery. If you save all your money for that rainy day that may or may not dawn, you might live a miserable existence meanwhile.
Now all this is fine unless and until something goes seriously wrong. Maybe you have a heart attack, maybe you get over it - but nothing will ever be quite the same again, ask any insurance underwriter. The risk has increased.
Maybe you get a cancer diagnosis, and it may turn out that you live another twenty years. But you don't know that. Yet at the time of the diagnosis you might want to rethink your plans and goals and strategies to take account of the possibility that you have never really seriously considered until now, namely that your life-span might be more restricted now. Sure, it's only damned lying statistics, and you might live on to a ripe old age. But the thought is bound to occur to you now - what if I don't? Are the arrangements you originally made for your widow, your children, your elderly parents and the budgie still as valid as they ever were, or would it be an idea to have a bit of a rethink in the light of changed circumstances and new information?
We normally think about passing property on down the generations, because that is what usually happens. But what if the child predeceases the parent? If we are used to making the decisions on these matters in the normal course of events, what will happen if we are not around to make them? Is it worth sorting things out in advance so that things will work out after your death pretty much as you would like?
We normally do this sort of thing based on various assumptions - that we will live an average life span, that our parents will die first, that our children will survive us, and so on. This is all based on statistics.
Now that I know I have cancer and have some idea of how advanced it is, I need a new and realistic working assumption of what my life-span will be. Obviously anyone's life-span is only ever an assumption until they die, and it could be way out, but if you have to make decisions you have to base them on something.
It would be absurd to ask you to put yourself in my shoes. You don't know anything about my personal circumstances, my complicated family relationships, and so on. So let me give you an example of the multiplicity of dilemmas I am facing at the moment.
My elderly mother manages to live alone in her own house, with some help, mostly from me. She has had a heart condition for a number of years, and inevitably as the years roll by she becomes gradually frailer. Her eyesight is gradually failing, her hearing is too, and so is her physical strength, though her mind is still sharp.
Until recently we have naturally both been assuming that in the event that at some stage she has to go into some sort of care facility, I will of course be around to sort that out, organise it, do whatever is necessary, help her settle down in her new home, deal with her existing house, and all that sort of thing.
But what now? Should I just go on assuming that?
Is it OK to imagine that whatever the statistics say can safely be ignored, that I need do nothing different now that I know what I know?
Is it fine to risk leaving mother high and dry because I have made no provision for the event that I might predecease her?
Is it fair to leave the burden of dealing with her situation entirely to other family members, who will also be grieving?
In any event she will be shattered at the untimely and distressing death of her son, were it to occur. Would it be unreasonable to try to give us both some small measure of peace of mind by taking whatever steps I can now to pre-arrange things for her declining years?
As old Churchy once said: "No one pretends that democracy is perfect or all-wise. Indeed, it has been said that democracy is the worst form of Government except all those other forms that have been tried from time to time."
That's pretty much how I feel about statistics - the worst basis for forecasting except... - and that's what I meant in the previous piece.
I do appreciate discussing these topics in the discussion thread, so do please feel free to make further comments there. Thank you.
F19585?thread=277219
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13 May 2003
Out there, we've walked quite friendly up to Death;
Sat down and eaten with him, cool and bland ...
We've sniff'd the green thick odour of his breath ...
We chorused when he sang aloft;m
We whistled while he shaved us with his scythe.
Oh, Death was never enemy of ours!
We laughed with him, we leagued with him, old chum.
- Wilfred Owen
Rather a grim opening, I know, but I wouldn't mind betting that anyone who's just been told they have cancer probably hears, somewhere in the background, the swish of a scythe, and glimpses out of the corner of their eye a black-cloaked figure scurrying busily around. Then laughs it off, of course.
Cancer: something that happens to other people. In this case, the other person is me. Initial examination shows just the one beastie, quite low down in the colon. But when they cut out that bit of gut and try to join the two ends together they might get a better idea of how invasive (or not, as the case may be) it is.
I'd been experiencing what the doctors call a change of bowel habit. This was a frequent and very urgent desire to go, but when I did go all I could manage was a very small stool and some wind. Great, huge relief, as though I'd taken the most enormous dump. Half an hour to an hour later, same thing all over again. But if I tried to resist the urge, or simply couldn't get to a toilet in time, it could be anything from extreme discomfort followed by an obnoxious effluvium and some soiling of underwear, to an uncontrollable disaster in a public place. As they say, in this condition, when you gotta go, YOU GOTTA GO ... there's no two ways about it.
Of course one of the things about the bowel is that it's such an emotional centre. Think of all the common phrases we have associated with it: gut-wrenching, gutted, gut feeling, gutsy, gutless, a visceral experience, the bowels of the earth, bowels of compassion, anal retentive, all the various phrases involving the sh*t word. Now we're getting to the bottom of it.
And that particular function of defecation we really want to happen at a time and place of our choosing, to be efficiently performed, and sweetly, cleanly, sociably and discreetly managed. When the experience is instead difficult, and messy, and smelly (not to mention very frequent), a certain amount of self-disgust and even self-loathing comes into it. It isn't so easy to retain your personal sense of your own worth - whatever that might be - while you are failing to control your bowels. That makes it particularly hard to talk about. In any case, it's not exactly the ideal topic for light dinner-party conversation.
So I went along to a gastrointestinal person and they did an initial exam, sticking various instruments a short way up through my rectum, but couldn't really tell very much, or at least weren't saying very much. It must have been something like stirring thick pea soup. Then I went back for a proper colonoscopy. This involved fasting from the day before and, also the day before, taking a powerful laxative to completely empty and wash out the bowel. The fasting and emptying out felt really good. Then, with the patient under sedation, in they go with the fibre optics, wiggling the camera around the various bends of the colon, and getting the full picture up on a large screen. It wasn't actually a particularly painful or uncomfortable experience, drugged up to the eyeballs as I was.
Later came the chat with my Consultant. By that time my wife had arrived. Before then I had already had quite a long chat with the Registrar (the Consultant's second-in-command) about what they had found and where we go from here. After the operation I'll be fitted with a bag as a temporary measure. Except that they don't yet know whether or not they'll be able to join up the two ends of the cut bowel properly, in which case the bag might have to be permanent. A-ha. Or maybe not.
We go in to see the Consultant and the door closes discreetly behind us. He did a very good job of being explanatory, not unduly pessimistic, but not making any promises either. We'll have to wait and see. My wife and I are very happily married, and as the consultant was talking I could see out of the corner of my eye her face gradually crumple more and more, as some of the implications of what he was saying began to hit right home. Nevertheless she maintained her composure and even managed to rustle up a couple of intelligent questions when it came to it. I had been expecting the outcome (though still haven't realised the full implications of it all) so I wasn't too surprised or shocked (I was still sedated, of course), but at that moment I just wanted out of there, and desperately wanted to be alone with her.
Next up will be a CT scan. A quick google tells me that this is Computerised Tomography. Sometimes called a CAT scan, for Computed Axial Tomography. I suppose this will help them decide whether it's worth doing some surgery or whether I'm too far gone for them to bother.
So the whole thing could turn out to be a series of steps and stages. Waiting for results, some procedure or treatment perhaps carried out based on that, assessing the outcome of that, and so on.
Anyway, I'll post my jottings here from time to time, as long as I have the ability and the inclination. I'll try and arrange things so that if I do stop posting for a long time, someone else might be able to explain the situation.
There looks to be some good information from a UK perspective at http://www.cancerbacup.org.uk/info/colon.htm/ - I'm off to check it out. As I've found out in the past, you have to be very careful about medical articles on the web - they can easily be inaccurate or out-of-date.
15 May 2003
Learning to be a spin-doctor. Family conference, meeting of inner cabinet to discuss news management issues. Who to be told what (if anything), and when and how. Odd how important this has turned out to be - who'd have thought it? - and what a relief that a suitable policy has been worked out. Well, sort of worked out, anyway.
16 May 2003
Patient-medics liaison issues. Mike, a specialist nurse, has been assigned. Mike is organising and co-ordinating for me. He's like my agent. Flurries of phone calls have fixed up CT Scan for Mon in time to see Consultant on Tues to discuss results. Another moment of truth approaches!
19 May 2003
Went for CT scan. This is part of a whole area called Diagnostic Imaging, and to get to CT you have to walk down corridors past X-ray, Mammography, other depts I can't remember, something called Nuclear (what the hell is that?), and MRI. It's like a large spaceship - bare and functional, with a low purposeful hum of equipment, and occasional signs warning of radiation hazards. Sets of large doors leading into mysterious rooms have coloured warning lights, and signs saying things like 'Do not enter when red light is on. Radiation hazard.'
A few people stride purposefully along, some in grey-green surgical gowns, others in shirtsleeves and stethoscopes. Strangely, I don't see any white coats here. I arrive at CT and am given a measured quantity of foul-tasting clear solution to drink, and told that if I want to empty my bladder it has to be within the next ten minutes. The drink is meant to percolate through and show up my nether regions when it comes to scanning. I have to wait for an hour while nature takes its course.
I get undressed in a changing-room and slip on a gown. In the CT room the nurse puts a line into a vein on the back of my hand. This is so that they can inject a dye into it, again to show up on the scan. But not yet: the dye will be injected later by remote control. I just have to lie on a hard bed. rest both of my arms up over my head, and follow the instructions.
The bed moves slowly along horizontally past the electronic eyes. Back, and forth, and back again, and stop, and back some more, and stop, and forward, and so on in a seemingly random way. From time to time instructions come through a small loudspeaker nearby: Take a deep breath. Breathe normally. Breathe in and hold your breath. Breathe normally... etc as the bed moves slowly back and forth. At one point I am warned they are going to inject the dye, which will make my throat feel funny. No change in way throat feels. Did the injection fail? Have I done something wrong?
I don't actually know how long this has been going on, but it feels way too long. Eventually it is over and I can go. By this time I am feeling incredibly stressed. This doesn't make sense, because I have just been lying on a bed and breathing - that shouldn't be too stressful, should it? But for some reason I am so wound up about it that I'm just glad there's nobody around to ask me how I am or how did it go, because if anyone did at that point I would probably just strangle them.
By this time it was mid-afternoon and of course I hadn't eaten, so I went off and found a little greasy cafe still open and had a quick lunch. Home-made steak and kidney pie, with chips. Really greasy chips. Comfort food. Boy, I needed that.
20 May 2003
Interview with Consultant to discuss CT results. I knew all was not well as he started by asking me questions about my symptoms, like whether I had to get up during the night, what sort of leakage problems I had, and so on. This wasn't how things were supposed to go.
The long and short of it is that the CT scan showed that the cancer has spread. There are secondaries in the liver, maybe elsewhere too. Surgery to remove the bowel tumour would be a major operation to undergo and wouldn't cure anything. He was trying to suggest that if my symptoms aren't too bad it would be best just to live with them.
Chemotherapy can be used to zap the tumours as much as possible, to give me some extra time and perhaps a reasonable quality of life for a while longer - perhaps even up to five years. If I respond well to the chemotherapy and it shrinks the tumours, he held out the possibility of bowel surgery at a later date. If I don't respond well to the chemotherapy, clearly five years is going to look like a very optimistic assessment. It could be anything from maybe a year down to a few months.
So the bottom line is that I am, in effect, incurable, and all they can do is keep me going for however long they can. When chemo starts to produce diminishing returns, I'll just be on palliative therapy to keep me as comfortable as possible till the end.
It seems that I've travelled a million miles in the past week. Before then I was just a bit unwell. Now I have incurable cancer.
I'm not doing a lot of web surfing on cancer at the moment - just reading some leaflets and looking at one or two respected sites. One of these is the Royal Marsden, a major UK centre of excellence and cancer research. This tells me that although a significant proportion of tumours of the gastro-intestinal tract are curable by surgery with or without chemotherapy or radiotherapy, 50-70% of patients relapse or have disease too advanced at presentation to be cured. That's a huge proportion, so perhaps it's not surprising that I fall within that category.
And although primary liver cancer is rare in Western Europe and the USA, with an incidence of 1-2 per 100,000 population, secondaries occur in approximately 25% of all patients with cancer. They can arise from any primary tumour, but are particularly common in cancers of the gastro-intestinal tract. They mostly have no symptoms, so can have become extensive prior to diagnosis.
Until today I was assuming that I would be having some major surgery, so I started arranging my life accordingly, telling people I would be in hospital for a while, arranging for bills to be paid while I was away - all sorts of things like that. Now it seems that I'm more likely to be home-based for the moment, so that alters the picture quite a bit.
Also, not knowing - even roughly - how long I've got causes some problems. I mean, if I knew I was going to pop off within, say, six months, there are certain major arrangements I would make which would be inappropriate, or at least unnecessary major upheavals at this stage, if I was likely to live for, say, another six years. I'm talking financial, property, things like that. So if only for that sort of reason, I'll be quite keen to monitor the progress of the treatment. Much as I might fear hearing it, it's really important to me to hear the news as soon as possible, especially if it's bad news. Keeping bad news from me, however well-intentioned, would be cruel and not kind. I think the wonderful people I'm lucky enough to have around me already know this, but don't worry - I'll keep telling 'em.
I now have to go and see a consultant oncologist to discuss therapy options.
22 May 2003
Of course I was starting from a very low baseline, but nevertheless today things started looking a bit more cheerful. Well it's all relative. In fact, once you've got over the initial shock of the dreaded C-word heralding the day of doom, and start to look around, you soon come to recognise the truth of the old adage that there is always someone worse off than yourself.
Today I had a long and interesting consultation with a consultant oncologist. This is a specialist in treatment by chemotherapy, radiotherapy and so on. I suppose it's rather like a general in a war, having detailed knowledge of all the different forces and weapons at his command, and the skill and experience to know how best to deploy them, and what tradeoffs are involved in aiming for maximum therapeutic effect while minimising unwanted side-effects.
The approach adopted by this particular consultant was as holistic as I have ever encountered from any complementary, let alone allopathic, practitioner. We first spent much time discussing my general health, lifestyle and other such getting-to-know-you factors. I asked to see my CT scans, which he had obviously already reviewed in detail, and which we now viewed together on the screen as he talked me through them. I could clearly see the dark splodges that represented the secondary tumours on my liver, as well as other interesting views of my insides. (These scans are pictures of a series of cross-sections through the various tissues and organs, taken as the scanner slowly moves along the body. I've seen ultrasonic scans of my unborn babies before, but these particular pictures, though I say so myself, were also most impressive!) It was important to me to see with my own eyes the clear evidence of these secondary tumours, because of course there are no symptoms and this dispelled any nagging doubts. He also gave me a physical examination.
We then went on to review various possible treatment scenarios. The chief constraint is that these liver secondaries, unless completely destroyed, will always be a problem. But since they are inoperable they can never be completely destroyed. He seemed to feel, however, that I am young enough and fit enough and well enough to be able to take quite a lot of punishment in the process of reducing my tumours. I naturally took this as a compliment, backhanded though it is.
He doesn't regard me as being ill, you see, but as a well person who happens to have these tumours. What a great way to look at things. Up to now I'd been thinking I was ill. Silly me.
In my case, in addition to chemotherapy, which is basically administering powerful drugs that can knock some of the stuffing out of malignant tumours, he's proposing to use some radiotherapy. While chemo is a generalised sort of approach that goes around the body looking for tumours to hit, radio is very much a focused and targeted device. It's bombardment with intense radiation in a comparatively small and precisely defined area. The target, in this case, being the bowel tumour which, fairly unusually for bowel tumours, he thinks is susceptible in my case to radiotherapy because of its type and location.
Of course it still remains to be seen how well or otherwise I'll respond to these therapies. I might not respond at all, or only poorly, in which case I'll have been through some quite severe and extended punishment for little or no benefit. But there's quite a good chance of a good, or at least a reasonable, response, which should result in giving me a 'higher quality of life' and maybe a bit of extra time on the planet. I'll drink to that.
So he's going to work out for me a detailed battle plan, and he tells me I'm going to be pretty busy for the next several weeks. That sounds ominous.
But, on reflection, it does make more sense than going straight into bowel surgery. I could probably do that if I really wanted to. But my particular lifestyle at the moment is such that to some extent I can accommodate my lifestyle to my symptoms, and I can also to some extent control my present symptoms with medication. It is probably going to mean giving up certain activities, at least for the time being - but then again, having surgery would also mean that.
In terms of how I'm going to feel from day to day in the shorter term, both options are going to result in pain, or fatigue, or nausea, or exhaustion, all that sort of thing, so there seems to be little to choose between them in that regard.
I could of course refuse all treatment at this point, and just let nature go its own sweet way, but I don't think many people in my position would want to do that (though I can see that some might), and I haven't even given it more than a fleeting thought.
2 June 2003
I've been shown round a specialised Cancer Centre. It is a very high tech and apparently state-of-the-art centre of excellence. Not particularly convenient for me to get to or - more significantly - drive home from after treatment, but I was most impressed and will be getting some treatment there.
It's like a theme park, really. It should have a sign saying 'Welcome to Tumourworld - the Magic Onco-Kingdom' or something. Within the complex is a Scanner Centre bristling with all sorts of weird machinery. You want some Positron Emission Tomography? Come to PETs Corner! There's also a Cancer Centre, a Chemotherapy Centre and of course a Hospice with a Palliative Care Centre attached, for those on the last leg of the journey. There's a centre for complementary therapies, there's counselling, there's a drop-in centre with a library and reference section. And then there are various ancillary services on site. Resident engineers to keep all the machines running sweetly; specialised pharmacists; people who make the made-to-measure devices that some people need for radiotherapy; and all sorts of other people with very strange and specialised job descriptions.
So I went in for some treatment and got tattooed. This is to do with preparing for radiotherapy on my bowel tumour. They have to get a precise fix on where it is, so that they can target just the tumour and not the healthy tissues surrounding it. So I had another CT scan, during which they kept calling out various numbers and co-ordinates, and finally tattooed my rear end with indelible markings, which they'll use in subsequent treatment sessions. As if it wasn't beautiful enough already.
Another thing you find at Tumourworld is patients. There is something that strikes you immediately when you first see a number of cancer patients in one place, and it's this: they don't really look any different to you or me. Their foreheads are not branded. Honestly, it can _feel_ so different being a cancer patient that it's really hard to remember, sometimes, that you don't necessarily look any different. Because by the time you have received a cancer diagnosis, especially one like mine, you have crossed, like it or not, a dividing-line. You have gained the entrée to an exclusive club (but not all _that_ exclusive, mind you!). Apart from anything else, you have now become the sort of person who spends a lot of their time at places like Tumourworld, for example. It does become a part of your identity, if not in your own perception then certainly in the perception of other people. And sometimes in very subtle ways.
But enough of this philosophising. My next ride at the Tumourworld Kingdom was the MRI roller-coaster. This is, of course, really another kind of scan. This is the one where you are sent into a long tunnel and have to lie there for about 40 minutes while being bombarded with magnetic fields.
First they gave me an injection in my thigh to stop the peristalsis. This is the normal involuntary constriction and relaxation of the intestinal muscles, which usually goes on all the time. They wanted my intestines to be absolutely still so as not to fog the picture. As it happens, this made things particularly comfortable for me, so I was well pleased. The whole MRI ride was for me much nicer and more relaxing than the CT scan experience. After CT I tend to feel really stressed out and need to rest and recuperate a while.
MRI is very noisy. You can bring a personal stereo and have that playing as you lie there, but I hadn't brought mine so they gave me a choice of music to put on - quite a wide choice, too - and played it through headphones. It really helped, even though the music I chose turned out to be lousy. MRI can also clearly be quite distressing for some people. I know this because they gave me a distress call thingy to press if I ever needed to. Which I didn't. It got rather warm in that tunnel, but apart from that I was fine. But I guess some people get claustrophobia. Or moving along that narrow tunnel might trigger re-experiencing their own birth trauma.
11 June 2003
On my next trip to Tumourworld I spent the whole day at the Chemotherapy Pavilion. As most people know, chemo is drugs. There are over 50 different drugs used in cancer treatment, and sometimes you get combinations of drugs. Add to that the different dosages and different time periods over which these drugs might be administered, and you begin to realise that if someone says they are on chemotherapy that's about as informative as saying they have a car.
These drugs are cytotoxic - poisonous to living cells. The idea, however, is that they attack cancer cells more than healthy cells, and that any healthy cells that do get zapped by the chemo will be able to repair themselves without too much hassle.
First of all I had a blood test to see if I was healthy enough to withstand the treatment. Most of the blood counts they get within a minute or two, while-u-wait, but since this was my first visit they also had to send a sample off to the lab for a further test to make sure my body will be able to get rid of the toxicity via the kidneys and the urine, otherwise it could build up inside me. So that test took rather longer to come back.
Meanwhile I had a consultation with a specialist nurse, mostly about side effects and what to do about them. Also a warning about using a condom for sex during chemo, to prevent toxic substances being passed across. You have to do that whichever partner is having the chemo.
Contrary to popular belief, not all chemo treatments cause hair loss. There's a whole long list of possible side effects and how to deal with them, but the main ones are nausea/vomiting, constipation/diarrhoea, and the biggie - tiredness. Fatigue is the side effect that most people find the most difficult to cope with. It isn't just feeling sleepy, it's a sort of lethargy and weariness on both a physical and mental level, so that things are physically much more of an effort while at the same time your attention span is reduced and you can find it very hard to concentrate. Extra sleep doesn't necessarily help, and in any case you might not be able to get it so easily because of another possible side effect - insomnia!
It's partly to do with the fact that the chemo can reduce the red blood cell count, to an extent starving the brain of its nourishment. It can also reduce the white blood cells, leaving you more vulnerable to infections. So people on chemo have to be very attentive to any signs of infection - eg raised temperature - and seek medical attention (antibiotics) right away rather than waiting till morning. It can also reduce the platelet count, making it more difficult for the blood to clot naturally, leaving the patient vulnerable to bruising and bleeding.
Side effects can appear at different stages during the treatment period. Some might appear initially, then perhaps tail off. Others might appear later, and gradually get worse. Some of them can be expected to continue for some time after a period of treatment has ended.
The Chemo Pavilion is no 90-second white-knuckle experience. For many it's a long, long ride, taking hours. This is because after all the checks and chats and stuff, your drug prescription has to be individually ordered from the on-site pharmacy, made up, checked, sent over to your nurse, and checked again. Then you have to be rounded up from wherever you've wandered off to meanwhile, and sorted out for the treatment. (Actually I leave my mobile phone number at reception so they can call me even if I've left the site.) And the treatment itself can take a long time, because the drugs are often administered via a drip into a vein. The whole thing is a bit like a visit to an expensive hairdressing salon, possibly culminating in several hours spent under the drier.
Anyway, after the chat with nurse Ian it was time for the chat with my Dr Onco, as I shall call him. At this point came the good news. I won't be having drips, I won't need injections. I'm to have tablets, which I can easily take myself at home. No daily slogs on drips in the chemo kingdom for me - yippee! The drug I'm getting is called Capecitabine (brand name Xeloda), and I just take the tablets twice a day (12 hours apart) every day for two weeks, then nothing for a week, then the cycle starts again. So I only need to make the trip for chemo once every three weeks. This is great news.
Onco is very enthusiastic about capecitabine. We had quite a chat about it. He told me he's been working with it since 1995 with excellent results. He did some research on it himself in the early years and found that it resulted in between four and eight times the concentration in cancer cells as in normal cells (depending on the individual patient). In other words, it tends to make a beeline for the cancer and bed itself down there and leave the rest alone - relatively speaking. Consequently the side effects are greatly reduced.
He told me that he is so enthusiastic about this drug that whenever it crops up in the media they tend to 'wheel him out' (as he put it) to be interviewed about it. I told him I'd watch out for him. As it happens, there was a big splash on this drug in the British press just a week or two earlier, and I had seen some articles on it, so for some reason it's big here just at the moment. I've forgotten why, however, since when I was reading about it, it sounded so good that I naturally assumed that it wouldn't be appropriate for me, it was only for other, luckier, people. So there you go.
When they first discovered my bowel tumour there was some idle talk of possible surgery, then I had some scans and they discovered the secondaries on my liver. Now if I had gone in for surgery at the time it would have meant that the liver tumours couldn't be treated at all for something like three months, which obviously isn't a brilliant scenario. Having the chemo now will start to treat the liver secondaries as well as the bowel primary, so this is at least encouraging.
Of course part of the reason for this consultation with Dr Onco is to get me to sign a consent form for the chemo treatment. We had been chatting away about this and that (as one naturally does when meeting with a consultant oncologist in a clinical setting), when he asked me,
'You're not a lawyer, are you?'
I told him I wasn't.
'In any case,' he said, 'the consent form isn't a legal document'.
'Oh good,' I replied, tongue in cheek, 'so even if I sign the form I can still sue you, then?'
'Oh yes, of course,' he laughed.
I signed it and gave it back to him and he countersigned it. 'By the way,' I said, 'did you notice that I signed it "Faust"?' [It does sometimes feel at such times that I'm signing my soul away.]
He chuckled, swept up the form and his other papers, and went off whistling merrily.
In due course my final blood result came through OK and the on-site pharmacy sent my package of drugs over. It seems that no-one on chemo just gets a simple treatment. People get given goody-bags with all sorts of stuff. Other drugs to take for the side effects of the chemo. More drugs to counter the side effects of the drugs you take for side effects. Home injection kits. Steroids. Possibly all sorts of other stuff - incontinence pads, wigs, and goodness knows what else. Some of the regimens of which drugs to take, what dosage, and how often, and on which days, and so on, are really complicated, and could be pretty difficult to follow, especially if you are feeling woozy anyhow.
As you might expect with my wonder-drug I didn't do too badly. Apart from the chemo itself I just got something to take for nausea and something for diarrhoea. As it happens, the drug they gave me for diarrhoea - loperamide - is one I had been getting myself over-the-counter, not actually for diarrhoea but simply to suppress my bowel symptom for long enough for me to be away from home for a few hours. Like coming to the h2g2 summer meet at the pub and getting home again in a reasonable condition.
I'm allowed alcohol, by the way, you'll be pleased to know, in reasonable quantity. But apparently beer and wine are less likely to cause nausea than drinking spirits, so spirits are not recommended. Pity about that - I have some excellent single malts at home.
So off I went with my goody-bag and promised to come back in three weeks. But as it turned out, I was back at Tumourworld much sooner than that.
June/July 2003
I've been meaning to write about my radiotherapy experience but have put off doing so because I don't find it very easy to describe. There are two reasons for this. One is the fact that the equipment moves around quite a lot during the treatment session in ways that are hard to put into words; and the other is that the position I am in at the time gives me very limited visibility so it's hard at first to know what's going on.
I've been surfing around for a link to a reasonable set of pictures of the equipment, but haven't come across any yet. Those I have found so far are a) much too small, b) not nearly detailed enough and c) not necessarily of the same make and model of machine they've been using for me, so a bit different in appearance, which doesn't help. The machine is actually called a Linear Accelerator, but machines called that seem to be used for all sorts of purposes that are little to do with radiotherapy treatment for cancer patients, so I'm a bit confused.
Anyway, I have a treatment every day Mon-Fri at the moment, so having had a few I'm beginnning to get some idea of what's going on. Before the treatments proper began, I had a session on a simulator which, rather like a flight simulator, reproduces exactly what will happen during a live treatment session. This is so that the radiographers can check that everything will go according to plan.
It's all very high tech, and the treatment plan will have been worked out with the aid of computers so as to target the radiation on the tumour, the whole tumour and nothing but the tumour, so help me God - within certain tolerances, I suppose. The radiation with which the tumour is to be bombarded is apparently an intensified form of X-ray, and I won't feel a thing and it won't make me radio-active. The treatment plan will of course specify the intensity and duration of radiation to be applied, as well as the area or areas to be targeted.
What I did feel was the absolutely disgusting taste of the barium drink they gave me before the simulator session. It was a creamy white concoction and needed chasing down with large quantities of water to try to get rid of the appalling taste. Fortunately that appetiser seems to have been a one-off just for the simulator's benefit, and I haven't been given it since.
The treatment room itself seems surprisingly empty when you first go in. There's a table, of course, for the patient. The equipment seems to consist of what I might as well call a computer-coloured (light beige) vertical column some way off, with a large dial half-way up it and what looks like some kind of projection at the top.
I remove my shoes and nether garments and lie face down on the table, with my arms folded round the top of my head and my left cheek resting on a firm pillow. (By the way, fellas, it's an extremely good idea at this point to ensure that your manly bits are disposed downwards towards your thighs rather than upwards towards your sixpack. Otherwise they get irradiated. Which makes them sore. Believe me, this is a tip worth remembering.)
I am urged to remain as still as possible, so apart from an excellent view of my right upper arm I can see very little, and that only with such peripheral vision as is left to me. The table I am lying on is moved into position. As well as moving fore and aft horizontally it also swivels horizontally and of course there is a vertical height adjustment too, so in the hands of an enthusiastic operator it can be quite a ride.
There seem to be at least two radiographers in attendance for each session, and I somehow get the impression that there is a pecking order, a junior and a senior. Funny how you latch on to things like that. Once they've got the table right, they start to adjust me. Just gently shifting my position ever so slightly. I feel fingers touching my rump: they are sometimes warm and sometimes cold. I tend to prefer the cold ones, because it's quite warm in the room. Sometimes they seem to be making some marks on that area with a pen. X marks the spot.
It's all rather pleasant, I must admit, and puts me in mind of those old Victorian drawing-room ballads, the Indian Love Lyrics by Laurence Hope, set to music by Amy Woodforde-Finden; and particularly the 'Kashmiri Song' -
Pale hands I loved beside the Shalimar,
Where are you now? Who lies beneath your spell?
Whom do you lead on Rapture's roadway, far,
Before you agonise them in farewell?
Of course I can't actually see whether the particular hands beneath whose spell I lie are pale or dusky, but no matter. Is that a faint scent of the roses of Isfahan, or the jasmines of Mossoul wafted on a delicate breeze - or just the woody notes of my underarm Givenchy? Whatever, I give myself up happily to the gentle touch sensations and imagine myself dwelling on a cool lakeside somewhere just out of Srinagar.
Meanwhile a mysterious conversation is going on, sotto voce:
'Seven point three...'
'Right, so that's 22 then...'
'Nine right...'
- and so forth.
During the session I'm vaguely aware of a lighting display, with the room lights being switched on an off at different times, and machine lights coming on sometimes. Anyway, once they have me where they want me, if you see what I mean, I'm told to lie very still now, and I guess that they leave the room and retire behind lead shields and concrete barricades to run the machine.
The machine starts whirring and humming, and sometimes it seems from where I am lying as though the walls and ceiling are closing in on me. What's actually happening, I have since discovered, is that when the radiation machine, the linear accelerator, gets going it puts out tentacles. Telescopic arms emerge and encircle me. The whole structure seems to gyrate and revolve around me. I get three shots of radiation, each in a different position - right side, centre, and left side. They are quite right, I don't feel a thing.
Among the various whirrings and buzzings and hummings of the machine it sometimes makes a short sound just like a telephone ringing. I find out later that it isn't the machine at all. It's the phone in the control room that also rings in the machine room. Duh. Mind you, it always seems to get answered after one short ring.
I get chatting to a senior radiographer and start telling her about this site and what I am doing here. I mention that I'm writing about my experience partly because I found so many people, myself above all, ignorant about even the basics of cancer and cancer treatment, in spite of the fact that almost everyone will at some stage know of someone with cancer. She's very interested. She tells me how sometimes cancer or radiotherapy crops up in the storyline of a TV soap, and how they always seem to get it wrong, in her eyes, misrepresent it, and give people an entirely wrong idea. So much so, apparently, that after some soap episodes mentioning the subject she can get patients ringing up to cancel their treatments. She told me how she once had a TV producer as a patient, and spent a lot of time trying to persuade him to put on a really accurate and informative documentary about it.
Oh, by the way, having started the radiotherapy my chemotherapy regimen has been changed slightly, to fit in with the radiotherapy. Apparently the two therapies really potentiate each other and work well together. The treatment plan at the moment is to run both in tandem for a total of five weeks, then have a complete rest from these treatments for six weeks. During the time the radiotherapy continues to work. I guess after that six-week period I'll be having another scan and we'll see how things are at that stage. By that time I calculate we'll be virtually into October.
By the way, I came across a statistic recently - for my cancer situation the five-year survival rate is less than ten per cent. Just so you know what we're talking about here.
13 July 2003
Having just re-read that last paragraph, and from the interesting discussion it has prompted over on the discussion thread, I realise that although I knew perfectly well what I meant, no one else did. Anyway, it's like this, sort of, if I can get my thoughts in order.
As we go through life we make various decisions, short-term decisions and longer-term decisions, which to some extent we base - consciously or unconsciously - on assumptions we make about the future. Do we commit to this relationship, decide to have children, go in for a mortgage, apply for that job, join a pension scheme, travel round the world, etc etc.
Now we all know that we could be run over by a bus tomorrow, be murdered by an axeman breaking into our house at night, be killed in a train crash or something. All these are possibilities, but most of us, when making long-term decisions, decide these are not worth very serious consideration. Of course, we will maybe get the insurance policies just in case - or maybe we just take our chances.
Most of us don't organise our lives around these remote possibilities which could happen but probably won't. But how do we know they probably won't? Statistics! So whether we realise it or not, we do make decisions having regard to the statistics. It's the only rational thing to do. The chances are the statistics will come out for us pretty much as we thought, and as far as possible we cover the remoter possibilities, but not to the extent of making our present lives a misery. If you save all your money for that rainy day that may or may not dawn, you might live a miserable existence meanwhile.
Now all this is fine unless and until something goes seriously wrong. Maybe you have a heart attack, maybe you get over it - but nothing will ever be quite the same again, ask any insurance underwriter. The risk has increased.
Maybe you get a cancer diagnosis, and it may turn out that you live another twenty years. But you don't know that. Yet at the time of the diagnosis you might want to rethink your plans and goals and strategies to take account of the possibility that you have never really seriously considered until now, namely that your life-span might be more restricted now. Sure, it's only damned lying statistics, and you might live on to a ripe old age. But the thought is bound to occur to you now - what if I don't? Are the arrangements you originally made for your widow, your children, your elderly parents and the budgie still as valid as they ever were, or would it be an idea to have a bit of a rethink in the light of changed circumstances and new information?
We normally think about passing property on down the generations, because that is what usually happens. But what if the child predeceases the parent? If we are used to making the decisions on these matters in the normal course of events, what will happen if we are not around to make them? Is it worth sorting things out in advance so that things will work out after your death pretty much as you would like?
We normally do this sort of thing based on various assumptions - that we will live an average life span, that our parents will die first, that our children will survive us, and so on. This is all based on statistics.
Now that I know I have cancer and have some idea of how advanced it is, I need a new and realistic working assumption of what my life-span will be. Obviously anyone's life-span is only ever an assumption until they die, and it could be way out, but if you have to make decisions you have to base them on something.
It would be absurd to ask you to put yourself in my shoes. You don't know anything about my personal circumstances, my complicated family relationships, and so on. So let me give you an example of the multiplicity of dilemmas I am facing at the moment.
My elderly mother manages to live alone in her own house, with some help, mostly from me. She has had a heart condition for a number of years, and inevitably as the years roll by she becomes gradually frailer. Her eyesight is gradually failing, her hearing is too, and so is her physical strength, though her mind is still sharp.
Until recently we have naturally both been assuming that in the event that at some stage she has to go into some sort of care facility, I will of course be around to sort that out, organise it, do whatever is necessary, help her settle down in her new home, deal with her existing house, and all that sort of thing.
But what now? Should I just go on assuming that?
Is it OK to imagine that whatever the statistics say can safely be ignored, that I need do nothing different now that I know what I know?
Is it fine to risk leaving mother high and dry because I have made no provision for the event that I might predecease her?
Is it fair to leave the burden of dealing with her situation entirely to other family members, who will also be grieving?
In any event she will be shattered at the untimely and distressing death of her son, were it to occur. Would it be unreasonable to try to give us both some small measure of peace of mind by taking whatever steps I can now to pre-arrange things for her declining years?
As old Churchy once said: "No one pretends that democracy is perfect or all-wise. Indeed, it has been said that democracy is the worst form of Government except all those other forms that have been tried from time to time."
That's pretty much how I feel about statistics - the worst basis for forecasting except... - and that's what I meant in the previous piece.
I do appreciate discussing these topics in the discussion thread, so do please feel free to make further comments there. Thank you.
