Brief update: have been in hospital on drips, after very severe adverse reaction to the new treatment. I need a much stronger anti-emetic to cope with this Irinotecan stuff; dehydrated very badly, and had to be carted off to the A&E in an ambulance.

Back home, on stronger stuff, hopefully, will be able to continue treatment in two or three weeks.

The corollary of "positive thinking can help healing" is NOT "stop whingeing, grow up! get a grip!" - and indeed I've learned that grief, the lamenting of what is lost, even the abandonment of hope, can be part of the sort of acceptance you have to achieve before the phrase "positive mind set" can mean a thing.

Somewhere in my blog is a piece about the difference between "in denial" and "positive mental attitude" and at the time I wrote it, I found it hard to grasp the issue. I think I've moved closer to "OK, this is the situation. Now what next?"

It's no longer a case of trying to pretend that I can think the tumours away, or slow them down by being ebullient, but something different. It's more like taking the available materials, and seeing what can be made from them.

New chemo sessions, six altogether over the next 12 weeks, start Monday. I'm very ill again, and in noticing my illness, am finding out just how very unwell I was this time last year. I can't understand how on earth I booked my trip to Barcelona, and flew there, and arranged accommodation, and covered the Mobile World Congress in that state. Mary says: "It was all part of your 'I'm not sick' approach" - and that's one way of putting it. I think it was also a case of "I don't care if I'm sick, I'm going to do this."

That's a bit of both - denial, and transcendence. I suspect that the key to the sort of positive thinking which helps healing, is that it startswith acceptance. And I don't think that sort of healing can cure cancer, but I do think it can transform life.

None of which answers the question at the top. I'm going to submit to being systematically poisoned. The toxins are designed to sabotage my body, and in doing so, will probably make me even more ill. Already, I'm suffering from intermittent nausea, and pain in the abdomen before eating. Next week, I'll probably have severe (possibly, life-threatening) diarrhea on top of all the other symptoms. I'll have to take steroids to protect my brain from becoming inflamed. I'm hopeful that the anti-vomiting pills I had last time will be effective this time, but who knows? - different poison, this time. And above all, there's the fear of another cerebral incident similar to the "migraine" I had in July which has left me with my sight impaired, and (probably) was caused by dehydration. Bad diarrhea can quickly produce the same symptoms of migraine. Can it take it to that next stage, almost like a stroke? If I have another, will I lose my sight altogether?

Not "positive thoughts" at all! But all part of the reality of the situation, and a reality I have to accept, and then move on from.

 Apparently, this fingertip and toetip hypersensitivity will pass. That is to say, the process of neural regeneration will take place faster than the progress of my illness. At some stage, then, I'll be able to get up and put my feet on the floor without having to get brave about it first; I'll be able to grab a keyboard and start typing, without gritting my teeth.

And, I hope, I'll be able to wake without being instantly reminded of my condition.

Apologies, both my readers. Neither of you enjoy it when I'm in a negative frame of mind. It helps a lot, when following the blog (I'm assured) to have cheerful, forward-looking and even humorous views of the world - and it can be done. Comedy series on TV have been set in a hospital ward ("Only When I Laugh") and the brave little soldier is an object lesson for most people, because it shows that suffering can be on a greater scale than the everyday irritations of commuting, domestic chores, and sexual conflict - and yet, can be faced with calm acceptance and determination to transcend...

Moaning about how awful one feels, is not quite the way you're supposed to do this. 

Right now, sadly, I'm letting the side down. I wake at 7 AM, from a strange dream (all my dreams are somewhat strange) where I've been taken prisoner by Microsoft and taken to a perpetual Seminar - or where I've been given a seriously difficult programming task to solve, and can't find the manual, or have been betrayed to an implacable enemy by my fellow guerilla warriors. And in all these dreams, I'm just a human being. Not someone with cancer.

As soon as I realise that I'm awake, I realise that I have to have a pee. Can't do that in bed, so have to get onto my feet and walk to the bathroom; and that is going to hurt. 

You'd think you get used to this. I suppose, you do, sort of; but my reluctance to face that first step seems to be growing. My sense of "oh, no" when I think of putting my fingers on the keyboard is reaching the point of rebellion: "I don't WANT to do that." And the ability to close my eyes, and let the dream world reclaim my attention, becomes more and more prized. 

Amazing. Something I hadn't noticed before; the way all my closest friends and family are starting to form a support group, or a series of support groups, not for me, but for each other.

I suppose it would be inhuman of me if I didn't experience some sense of guilt about this. I mean, I didn't do this to anybody, and it isn't an elective experience! But it feels like I did - the same way you respond with remorse when you accidentally tread on someone's foot in a crowded lift.

Guilt passes (well, mostly) and then you realise something remarkable, and quite moving: that you are being privileged to witness some of the process of mourning that will happen after you die. It's quite a poignant realisation, actually. But also, very uplifting... I get a feeling of liberation? absolution? a sense, maybe, that I won't be held responsible for the pain.

This may explain why I'm feeling in quite a positive mood this morning. A lot of the up-beat sense is simply relief at getting yesterday's ordeal done; if yesterday was tense, "exams today!" anticipation and fear, today's is: "Right, it's over!" and even the distress of finding my friend to have been afflicted with the same disease, can't quite dissipate that relief.

The arm was quite sore when I went to bed; the anaesthetic had worn off, and the cut is quite deep, obviously, to expose one of the major veins of the upper arm. I took a single Ibuprofen tablet, and slept without discomfort most of the night.

This morning, one of my loved ones was in deep distress, and I know part of it was dread over the progress of the disease - stirred up by the operation yesterday, I reckon. And I got to hear the edge of a conversation of kindly support and advice. Obviously, I don't know for sure that they will come through this, but it was good to realise that truly, this won't be my responsibility, and that they won't be on their own when I'm gone.

Ran into a fellow-sufferer today; a friend who has been a great help to me in dealing with it all. The thing is, I didn't know this friend was a fellow-sufferer till today.

Here I have to be pretty cautious; like so many cancer patients, this old friend thinks she can't reveal her illness publicly. So one minute, I was sitting in the "Imaging" department waiting room, needing a quick X-ray of my brand-new PICC line to make sure it fits... and expecting my friend to be positive and cheery. And the next, I was listening in disbelief as she described her own diagnosis.

She thought she had piles. But no: same as me, the blood emerging was from a colon tumour. And by the time she got the diagnosis, it had spread to her brain and (they think, possibly) her spine. She's now undergoing radiation therapy. And chemo. It's really not that common for colon tumours to spread to the central nervous system, either. And she's not much more than half my age. Unfair, is it not?

So I took my X-ray to the chemo suite, and they seem to think that it's really not important that we start right away; so instead of Monday 16th, I'll be getting my first diffusion of Irinotecan on Monday 23rd. I have to say, their lack of apparent urgency is strangely reassuring! - in March, when I went in for my first PICC line, they rushed me straight out of the operating room into chemo and began squirting chemicals into my veins before the anaesthetic had worn off!

It is really starting to come home to me that we're all going to die, you know? It's not just me...

I was expecting to have lunch yesterday with a very old friend, who had to ask for a rain cheque - on account of his wife had to go to see a surgeon for the results of a CT scan.

He just rang, and chatted to Mary for about 15 minutes, because she's got advanced colorectal cancer with secondaries not only in the liver, but the lungs as well.

The problem is that he can't tell anybody, because she's the figurehead of a public company which would collapse if her condition were known to their customers. So he's got to go into the office and be Casual and Reassuring for the workers there about where she will be over the next three months and then he's got to go home and be Strong and Positive for the kids and then he's got to go to his wife and be Supportive and Optimistic for her.

And really, he just needs to sit in a corner and cry -  so he's doing that on the drive to work and back.

I've been very lucky. I have so many good friends (and Friends!) who have been able to just sit and listen and offer sympathy... and have kept in touch, without histrionics. And most of my business acquaintances know about it, thanks to Wavey Davey's decision to go public in cix:hacks ! and of course this blog; no I don't think it's fooling anybody at all. But that's not the point; the point is that if you google for me by name, this won't come up, and so only people who know it's me will plug in. I don't want to be a celebrity cancer patient like my old friend John Diamond became. I don't know how Terry is coping with his Alz but I'm betting it's hard having to do it in the public eye.

In local news, the effects of the flu jab seems to be much less pronounced, and although I'm still getting "uncomfortable" around 7 pm and having trouble eating supper, and then having to spend an uncomfy couple of hours getting the food settled in, the sense of dread and panic caused by a perpetual gut tangle all last week is now mostly history. Hope it doesn't come back!

Chemo restarts 14th, or thereabouts. Have installed bucket by side of bed... sense of humour will be stored somewhere nearby, in case of breakage. But it was given a big, big boost by the arrival - entirely unexpected! of Amy and Lily and their mother, Lucy, Monday. Has shagged my productivity to heck, of course! but it was great fun, and cheered me up tremendously. "Come on, Grandad, hide under this curtain with me!" and then "I need a story, Grandad, actually, I need five stories, here you are..." and then "I'm going to sit next to Grandad for lunch" followed by a game of "buried treasure" where the bits of sausage were concealed in holes in the mash and then "discovered" and disinterred and consumed with gusto...

Now, all I need is a working airgun so that I can stop that wretched squirrel from pillaging all the bird-seed from our garden bird-table... and the week will be moving in the right direction.

But not for my old friend. I hope I can help a bit.

I'm being rather racalcitrant. My doctors think I'm suffering from "pressure on the liver capsule caused by enlargement of the organ, due to tumour growth"

I don't.

Of course, in such cases of disagreement, the medical experts are almost always right, and I know that. But I'm having trouble accepting it, all the same.

First, the symptom isn't new. I first experienced it the week of my final chemo treatment back in June (or thereabouts) when, as we know, the liver tumours were all inactive, and shrinking rapidly. It was extremely painful, then, to the point that I had to sit up in bed to get any sleep; and the symptoms are identical, now. Specifically, a combination of slow, reluctant motions (but not hard, dry ones) and this very centralised discomfort right at the point of the breastbone.

As I understand it, the liver capsule is sensitive to enlargement of the liver, and it does hurt when that happens. But everything I've managed to read suggests that the capsule is more to the right hand side, and that when it is stretched, it expands down below the ribs on the right.

Next: this symptom only appeared after my flu jab, last week (Thursday). It lasted over the weekend, and was very painful indeed. Then it eased, gradually, during this week.

Not a lot I can do about it, is there? - apart from what the doctor says, and taking painkillers. And hope it wears off, or that the next chemo course stops it.

But that's no treat. One of the most predicted side-effects of irinotecan is diarrhoea, and it's one of my most-feared illnesses. I get migraines very easily. And experiments show me that if I stay properly hydrated, I don't get them. By contrast, I can have disastrous migraines if I dry out, and this particular poison has that effect.

And it isn't just a question of "I dread the next chemo..." though that comes into it, naturally! It's a problem of appropriate diet.

Here's the problem; all the stuff you can read says "don't eat high fibre food" as a way of avoiding the runs. Now, I do understand the role of high fibre diet in maintaining loose stools! - but the effect doesn't indicate a similar cause. When you're poisoned, the runs are caused by an attempt by the bowel to flush the toxin. High fibre diets don't have that effect, and I'm dubious about equating the two, frankly. It looks, to me, as if someone has just said: "What can cause the runs? High fibre? avoid!" and I think this is faulty logic. 

Oh, yeah... I'm scared.  

If you want to look it up, it's Irinotecan they'll be giving me this time.

Irinotecan is a topoisomerase 1 inhibitor, which prevents DNA from unwinding. Chemically, it is a semisynthetic analogue of the natural alkaloid camptothecin. Its main use is in colon cancer, particularly in combination with other chemotherapy agents. This includes the regimen FOLFIRI which consists of infusional 5-fluorouracil, leucovorin, and irinotecan.

So what's the difference? Simply, it's far more likely to make my hair fall out, and almost certain to give me two days a fortnight of extreme shits. If you've read this blog you'll know how little I like diarrhoea , and you'll understand that there has to be a good reason to switch; and you'll probably remember that it's the tingly fingers and feet that are the problem with the alternative, Oxaliplatin.

I'll be back in hospital for the PICC line in two weeks, and then on chemo for three months. The opinion of my oncologist: "it's not going to be any different, just different side effects." And yes, the hair is much more likely to go, including the beard. That will be strange, but there...

I'm very curious about this neuropathy, because it's referred to as "peripheral neuropathy" because it affects the nerve-endings. Now, that puzzles me. I have nerve-endings in my tongue; very sensitive ones, too. Why aren't they affected?

So, I've asked if Dr Leonard knows a neurologist I can talk to about this. What intrigues me is the possibility that the problem might be the type of tissue you have in your finger tips and toe ends, and in the weight-bearing pads of the sole. If you look at the typical diagram of musculature, you'll note that there are no muscles at all in these areas. Could it be something in the way muscles work, which prevents the oxalates from building up in (and damaging the nerves in) these areas?


Treatment starts in 2-3 weeks, so that will be the end of my swimming, of course; the PICC line doesn't like being immersed. I'm not bothered by that. When we first were warned that the CEA count very possibly means re-starting treatment, I was actually dismayed to be read a sermon about how good orally-delivered chemo is. I really feel that (surely!) if you can get the stuff directly into the blood-stream, it's got to cause fewer problems than if you have to process it through the gut, and probably work better too. This time, we were asked straight: "Are you OK with the PICC line going back in?" and I have to say, I was hugely relieved. And for the hair loss, well, I have little enough of that, in all conscience, and what I do have, I keep pretty short. I shall buy a pretty hat. And the beard will grow back within a month or so, when the course is over. 



But I'm deeply pissed off with this, all the same. Right now, it would have been so very much better to have a miracle, wouldn't it? Who needs chemo?

Me, apparently! So now I have to go and think hard about very expensive honey... - more on that next post.

---

ctd P 94, as they say...

Brief follow up: got the results of my blood test today, long chat with the oncologist, the lovely Pauline.

I was basing my expectations on a gut feeling. The situation is simple enough: I can't use the same treatment that was so very effective in my first 12 weeks (six sessions) of chemotherapy. I turn out to have a very bad response to platinum based chemo, which is by far the most effective for secondary colon tumours. So when the tumours start regrowing, we'll have to use something else, which I fear would be bound to be less effective.

Therefore, I dread the return of their activity, because it feels like a more serious sentence than it would have done. The old treatment wasn't pleasant! - but it was startlingly effective. Nobody knows what the new one will do. The tumours are known to be more aggressive than average.

Well, in the end, we have nothing.

The team decided to monitor my ECA (embryonic cancer antibodies will do as an English expansion!) because they were so low. As long as they stay low (the figure is anywhere between 1 and 5) you probably have no active tumours. So, after six weeks they did a blood test: they were still at 3, and therefore still no activity. Good.

Then, last week, another test: and this time, they were up at 13.

That's not terrible; when I was first diagnosed, they were at 30; and rose to 45 between then and the start of treatment. But it shows something is causing it.

The trouble is, cancer isn't the only thing that causes ECA counts to climb. Some infections can do it, too, and a cold is one. So while "low is good" it doesn't follow that "high is bad" unless you have supporting evidence. And the only reliable supporting evidence is a scan: so I'll have to go into Imaging again and have various dyes poured into my veins, and be X-rayed. Irritating: the whole point of monitoring ECAs was to avoid having to have regular X-rays.

There really is a reasonable possibility that things are OK. It's quite possible that the tumours have resumed growth, but it would be unreasonable to assume they did. I have a sore throat, and have had it for nearly three weeks now; and it is almost certainly the same bug my grand-daughters had when I visited them just before then.

It doesn't sound like good news, does it? But for me, it actually is a let-off: I went into the clinic expecting a short death sentence: "We're really sorry, Guy, but they're back, and we can't offer you any effective treatment, except something which will make your 'peripheral neuropathy' much worse." And I was afraid that would be followed by "It would be irresponsible to predict you'll survive much beyond Xmas..."

In reality, that possibility is almost pathologically gloomy - even if a relatively mild treatment is the only alternative, it won't be useless, and the oncology team expects that I have a two-year span - as a conservative estimate. They don't make predictions like that unless it really is conservative. So, there are good reasons to be positive about the next scan. And of course, the way they measure tumour aggressiveness is based on the response of the biopsy sample in a petri dish: I'm not a petri dish.

The other good news is that my sore throat is, virtually certainly, not a cancer-related one. "I have NEVER known colon cancer spread to the throat," said Pauline. "Very, very occasionally, it can affect the central nervous system, and spread to the brain. So we'll scan your head, if you like, but it won't be in your throat."

The reason I was afraid was, of course, simple Eeyoreism. My voice is almost disabled in its upper register by this infection, and I guess it is time to ask my GP to check it out and see what it is, and whether it can be safely left to heal itself.

The tragedy (of COURSE it's a tragedy!) was revealed when I tried "singing along" with the Last Night of the Proms, which was what revealed the problem; and since that, have discovered I've lost my squeak.

Now that is serious. One of the things I really enjoy about my voice is my ability to completely bamboozle cats. If I miaow, no cat imagines it's anything except another cat. And best of all, I can do a really good imitation of a juvenile; I can miaow like a kitten. It's a talent. It would be a remarkable talent for a boy; for a baritone adult, it's prodigious! And the larynx is just too thick and heavy with this infection ... I have lost my squeak.

How can I hold up my tail amongst the local feline community?

Last Friday, the hospital vampire - a nice cuddly nurse on the chemo ward - took a sample. Next Friday, the oncologist will tell me my fate.

Of course, I haven't any idea what that fate will be, but she'll have a pretty good idea from the blood samples. She'll be looking at my Carcinoembryonic antigen count. "It was found that serum from individuals with colorectal carcinoma,[2] gastric carcinoma, pancreatic carcinoma, lung carcinoma and breast carcinoma, as well as individuals with medullary thyroid carcinoma, had higher levels of CEA than healthy individuals."

At the start of my treatment, my CEA count was over 30; after treatment, it was 3. So everything depends on how the count is going up. She has the level at end treatment, the level a month later, and then two more every six weeks, till last week. There will be a curve. It will go, for example: 3, 4, 5, 6. Or, 3, 6, 8, 12. Or 3, 12, 21, 28. 

The slope of that line defines how quickly my cancer will return. And that, in turn, tells me how old my grand-daughters will be when I die. 


I am really, really having trouble coping with this. 

...yesterday was not one of the good days. I suppose I always knew that there would be bad days, but that doesn't make it any easier when one comes along.

Not to put too fine a point on it, yesterday was a day to fear death. I felt death stalking me, creeping silently closer, whispering threats.

I've had a few days where the neuropathy has finally made it clear that it isn't getting better, and is getting worse. Typing is now painful, and I'm making more and more errors. Walking to the garden centre isn't a long hike, but it was more than just "uncomfortable". And the slight pains I've been feeling in my lower chest have eased, but won't go away. All depressing; and then yesterday, I suddenly felt, rather than heard, the sands of time, running out.

Back in my early chemo days, with a slight fever, I felt no great clarity about what would happen, other than "well, it seems likely I'll still be around in a year's time." At that point, I had nothing to base it on except the Professor's observation that my case was "not a hopeless one."

And I had a dream which was more like a "vision" - in which I saw my two grand-daughters. They were both wearing matching, if not identical, dresses. They were standing at the foot of my bed; Amy at the corner, the other next to her on the side of the bed. Both were giggling, and jumping up and down, with their hands on the mattress. And although the scene was in my bedroom at home, it seemed suddenly obvious that I was in a hospital bed, with little time left.

In the dream I was delighted that the two girls were happy to see me, even if I was very ill. Only when I woke up later, did it dawn on me that Lily, the younger, was incapable of sitting up, never mind standing and jumping. I realised that Amy, in the vision, was at least six or seven. It was a powerful vision, and gave me some hope that I might live a little longer than my sixty-fourth birthday, after all.

Last night, it seemed unlikely, and I suddenly perceived that I would barely make 64, and that this was a much more aggressive cancer than I'd realised, and that my last few months would be spent in pain, disabled by oxaliplatin poisoning, and undergoing a futile set of chemo treatments.

I don't suppose either dream means a darned thing. But today, although I'm feeling more cheerful, I've lost the last sense of hope for a successful treatment. I hope it comes back. Yesterday, however, I felt: "What would be the bleeding point...?"

Fear the worst, always, when Professor Hubert J. Farnsworth enter the room with that phraseon his lips. It always signifies disaster, nicely packaged.

Well, it seems that I can use the "blister reflex" to get about almost as normal. That's excellent news, for me!

The blister reflex is the one you'll probably recall from the last time you went walking in shoes that were too new for the journey, and realised, about half way into the route, that you were developing a blister.

Nothing to be done about it. It's as far back as it is onward. Just keep walking. And, as you go, your body gets the message: "Nothing can be done about it, but I can't stay here!" and it says: "OK, OK, I'll turn off the alarm... but you'll be sorry later!"

Of course, you are sorry later; you get to your destination and find your shoes full of blood... and as soon as you get up again, you find the alarms are really back on!

With my feet, at least so far, there's no "sorry later" moment. It's uncomfortable walking with Oxaliplatin-damaged nerves. But if you simply ignore the discomfort, it stops telling you about it, and you can walk pretty much as usual. And, the good news: when you get up again later, it's exactly the same as the first time. "Oh ow, stoppit!" says the system. "Ignore it," you say. "OK." And that seems to be it.

So far, anyway.

I'm told the tingling will continue, and will probably get somewhat worse over the next couple of months. And then, gradually, it will improve over the next year. As long as I don't repeat the treatment, of course... which is the problem, since I'll almost certainly have to repeat it. Oh, well...!

---

Meanwhile, for those who have worried about "chemo brain" in its conventional sense, there's a lovely article in the NYT about "the opposite of chemo brain" which I completely endorse!

Neuropathy; a failure of some part of the nervous system, I guess. In the case of someone who has had oxaliplatin treatment for tumours, it refers to the loss of sensation, or pins-and-needles effect, which affects the extremities. Fingers, toes, ears, and even (in my case) some effect on the tongue and taste. It affected me every week I had the treatment, but quickly disappeared and by the time the next treatment was due, it was gone.

Or, so I thought. It turns out that "it is quite common for the oxaliplatin neuropathy  to worsen after treatment so be rest assured this does not represent another new pathology," says the oncologist, sympathetically enough. 

It's not really good news, however sympathetic! It means "it isn't going to get better." I'm stuck with fingers that hurt to type for the rest of my days; the damage done by this chemical is permanent. That's a fact that irritates me more than I can easily say. I really, really wanted to think that the tingling was an unprecedented sign of neural regeneration, and that I was someone special.

It must be very hard for the oncology team to give news of this sort.

The other problem with my toes may not be related. I'm still sort of hoping it isn't, because if it is, it's the worst news I've had. I can't walk any distance with the pain I'm getting from my bunions.

What I'm hoping is simple, because I've had this pain before, when the bunions first appeared.  I'm hoping that it's the same thing; damage caused to the nerves between the toes by walking barefoot. Barefoot walking is something I've learned not to do, but on our holiday, feeling pretty optimistic, I marched up and down the beach a lot. And on the stone pavements (which is really silly, cos I know that hurts) too.

As I understand it, the thing that happens with bunions is that your feet widen. The toes move outwards; quite why they think this will help, I can't tell, but they do it. And your shoes, which were too narrow in the first place, now squeeze them together even more, and (this is the tragic bit!) crush the nerves between the toes.

The nerves protect themselves (they think) by developing a hard covering or neuroma. That's what hurts when I walk on them. I did try wearing pads inside my shoes, with specially built (expensively built!) insoles to cushion the area; it actually made it worse. The cure? Wearing Teva Dactyls. So I've worn Teva sandals ever since I discovered that they mitigated the pain.

This pain is rather worse. If I walk without sandals, it's excruciating; but even with the sandals, it's impossible to walk more than a half mile or so, and slowly and carefully.  And what this means is that I can't take my favourite form of exercise; walks. I love a brisk walk, and for six weeks after my treatment finished, gloried in health and strength by taking energetic excursions; marching up to the supermarket for minor groceries, or to the Farmers' Market for special vegetables and bread and meat. Never take a bus if you can walk it in time, run up the stairs... and all of that, gone.

Exercise is said to be a major help in fighting this disease. I'll have to work out some other way of making myself tired... but at least I can still type, even if it hurts.

And I can still hope that if I give my bunions a holiday, they may improve...?

Just got back from hospital, where I did precisely nothing. I went to have a blood test, and cocked it up completely!

Last weekend, Mary made a chicken dinner - thighs wrapped in bacon, with wonderfully cooked stir-fry veg and a salad. She stacked her plate carefully, exactly as she wanted it, and then- instead of picking it up - as if with expertise of long practice, she put it precisely on the floor. One fluent gesture which should have picked the plate up, and only a couple of millimetres wrong; and it was all over the lino.

I felt like that.

The reason I was at the hospital for a blood test starts when we were on holiday in Crete. The beach along the North coast, near Rethymno, is rough - lots of volcanic rocks, very coarse sand. Walking any distance along it grinds your feet, and the resulting tingling sensation seemed to last. It wasn't until we got back home and it started to get worse, not better, that I realised something was wrong.

Yesterday, after a weekend spend waiting for it to get better, I went to the GP. I had something else to tell him too: my eyes are malfunctioning. This time, it's definitely something brain-related, because both eyes are affected identically; a small patch just to the right of centre, has become a blind spot. It started with the worse migraine of my life last Wednesday - drilling pain over my left eye-brow, and loss of vision on most of the right side. That's gradually got less over the past five days, but there's a slow-down in improvement. The migraine itself lasted three days, and I thought the tingling in the arms and legs was related - it can be.

Yesterday, the GP said he was troubled and he sent me straight off to the Western Opthalmic Hospital in Marylebone Road. They signed me in around 6.30 PM, and I got out almost bang on 10 PM, with a clean bill of health - no problem with the eyes themselves (well, I was pretty sure of that myself). And the other thing he gave me was a blood sample envelope.

Not until I was climbing the staircase from the fourth to the fifth floor of the Whittington hospital at 9.30 this morning, did I remember that the test was a "fasting" test; I was not supposed to eat after 9 PM on the day before. I'd not eaten a huge breakfast - just an apple and some peanut butter - but enough to completely invalidate the test. So I turned round and came home.

It's hard to maintain a good, strong ambience of unjustified optimism like this!

Exercise is supposed to be excellent for those taking the chemo cure; it's just very hard to do. But I may have found a way of making it a bit easier. So my doctor asked me to write it down, as a story.

In my case, it was a combination of Sky TV and Adrian that made me realise how it might work.

Adrian is a part-time computer fixer-upper, and so when he heard I needed to move my phone line from my old office to my new one, he showed up with his box of tools and his phone cables and his blow-torch and his putty. But Adrian is also severely dyslexic, and this can affect organisational skills. Maybe that's why he showed up with the wrong type of phone cable?

And Sky TV screwed up on a scale which it is hard to describe. All they had to do was wander around the garden till they found where the signal was strongest, and fasten a dish to the wall. What they actually did was to leave the house in absolute chaos, and cancel the installation. The two events combined to expose something I hadn't realised about "being tired."

Being tired is a standard chemo symptom. Being nauseous is something they can fix (for me, anyway) with powerful anti-seasickness pills - but being tired isn't amenable to anything they have tried on me. Quick description: within a couple of hours of starting the infusions, your arms feel heavy, you want to lie down, your legs won't work properly, and if you move at all, you find yourself panting harder than after a 100 metre sprint.

It's not the situation you want to be in when it becomes imperative that you get up and do things. Going to the toilet is a triathlon experience. Even eating (someone else prepares the food!) is an effort. Just sitting up and operating a computer mouse or typing... no, rather not.

So then the door knocker rattles. It's the man from Sky, wanting to know where to put the set top box.

I got up, carefully went down the stairs, and, sinking breathless into a chair, pointed: "There." He looked unimpressed, went out to his van, and  didn't come back for a while. I gradually recovered my respiration rate and pulse. Then he came back in: "Where do you want the dish?" - now, what sort of question is that? HE's the expert! "Do you want to see the roof," I asked helpfully.

It's a three storey house, and I gave him directions: "Go to the top floor. You'll see a trapdoor in the roof."

He went off, and came back. "I can't get up there."

On top of his van was an aluminium ladder. "Too long." I offered him the loan of my ladder, and he looked dubious. I showed him where it was - in my bedroom. Yes, up the stairs. He took the ladder, leaving me breathless and exhausted on my bed. There were thumpings and scrapings, followed by footsteps: "It's dark in the attic," he informed me. I told him to switch the light on. I told him where the switch was. More footsteps on the stairs, then silence, then footsteps. "It's broken."

I climbed the next flight of stairs. I pressed the light switch and sure enough, no light could be seen. "Hang on a tick," I told him, while I recovered my breath. I went down a flight, found a spare light bulb. I waited for him to come and get it. Eventually, I realised he wasn't going to, so I took it up.

By now, I was starting to get pretty angry, which may explain why, when he looked into the attic and said: "I can't go in there!" I decided that I could at least climb the ruddy ladder and plug the new bulb in. So I did. Then I sat on the top of the ladder for a few minutes. Then I decided that he'd probably need help finding the next trapdoor to the top of the roof, so I went into the attic and opened it.

When I finally got down the ladder, he'd disappeared. It took me another couple of minutes to summon the rage at sufficient levels to come down two storeys, out into the street, and to knock on the window of his van - where he told me that it was"elfans afety" and that he was cancelling the installation.

The problem of installation was solved by putting on my journalist hat and shouting at the Press Office; but the important part of the story isn't the Sky box. It was the fact that I was actually able to climb all those stairs and the ladder and then get back down. But at the time, I wasn't thinking about that. And I didn't think about it till next fortnight, when I was back on the infusion again, and Adrian came around without his phone cable.

We will, I think, skip all the details. It boils down to the fact that once again, I kept having to get out of bed.

Each time I did it, I was exhausted within  minutes, panting - literally - and shaking. But, although I didn't notice this at the time, the recovery period was shorter after each effort.

What I realised, thinking about it later, was that the first effort was crippling; even a one-minute excursion to the bathroom was completely exhausting. But, after 15 to 30 minutes, you could do it again, and this time, you could do quite a bit more.

And ten minutes later, you were ready for something else. And again, this time, you could do it for longer, and move more stuff.

I didn't actually work this out till after the weekend. To understand why this matters, you probably need a quick primer on chemo schedules, and all you really need to know is that you can't survive on continuous chemo; you need a one-week or two-week break, so that your blood can recover. My schedule was a one week on, one week off ritual; start Monday, and by Thursday, you can start the journey back. The weekend, you're wasted; the next week, you gradually get better and by the next weekend, you feel reasonably human again. And it was that second weekend that I decided to walk home from the doctor. And, much to my astonishment, I managed it. No, I wasn't walking fast, but I made the journey, nearly a mile, without feeling exhausted.

That started me thinking, and next time I spoke to the oncology team, I asked, quite seriously: "Is it OK to do exercise while on chemo?"

They were emphatic: "Yes, do all the exercise you can."

Now, I wasn't expecting that. I was expecting to be told: "No! You'll eliminate the active ingredients faster that way, and we need them in your system as long as possible." Not so. It seems that the tumours don't have any way of exercising; once they are jammed full of the stuff, they can't dissipate it rapidly the way the muscles and lymph system do from the rest of the body.

But the muscles and lymph system need you to move around, to do it. When they are jammed full of the stuff, they don't work easily or well. But every bit of exercise you do, helps them start the process of house cleaning. And the more they do, the easier they find the next bit of exercise.

At the end of my first chemo fortnight, I was barely capable of getting dressed AND coming downstairs. I could do one, or the other.

At the end of my second fortnight, I was walking to the end of the road and back. OK, it's only 50 metres.

That was when I asked about exercise, and decided to actually do some.

Lie in bed. Lift an arm, hold it out for a count of ten, then lower it.

When you feel recovered, try the other arm.

Then one leg. Then, a few minutes later, another leg.

When you feel up to it, try again, doing it all twice. Or, if you can, three times. Rest.

A bit later, try again, and see how many times you can do it. Four? Five? Wow...

By the fifth chemo fornight, I was actually walking around the City of London, looking for a restaurant where I was going to meet a business contact, and having a business lunch, and walking back to the bus stop.

And that was the first week of the treatment, the day after I finished having the diffusions. OK, I wasn't sprinting about! - I was walking at a measured pace. And occasionally, I'd be grateful for a red traffic light which let me stand by the road-side for a minute. But I did it. And I was fine the next day, too.

Basically, the more I did, the easier it was to do; and the response was incredibly quick. You wouldn't get that sort of improvement just by doing standard muscle-building and aerobic training. I'm talking about feeling stronger, more stamina, within hours of starting, not weeks later.

Just don't rush it! A little bit, and then another little bit. . . that's all it takes.

It's very hard, having spent so much effort on adjusting to being ill - and then suddenly having to spend time not being ill. You find yourself - well, I find myself! - constantly drifting back to thoughts about the illness, and then realising that for now, and for the next couple of months at least, I can forget all about it, and just be me.

We're playing at grandparents. Amy is spending two nights (has morphed into three) "At Granny's House" and how on earth this child's mother copes with her AND a six month old baby, I simply can't imagine. Monday was our first full day, and it's left us panting! She DOES NOT STOP AT ALL and is completely focused on everything she does, and does it all at top speed. I walk briskly, much faster than average; she just runs, and runs, and runs. I took her round the local park, and 90 minutes later, finally, she slowed down enough to demand that I carry her the last half mile home on my shoulders... where she jogged and bounced and steered me this way and that without any evidence of fatigue at all.

Same couldn't be said of her grandfather when he got home....

We're joining them on holiday next week. That is, if we can avoid swine flu between now and takeoff - flying to Crete Tuesday. Will be the first holiday we'll have outside the UK for a few years. I can remember when being a journalist was a way of achieving a comfortable living...

 It has been decided: the surgeon and the oncology team have consulted, and agree that there's no advantage to taking me into the operating theatre. So forthe next two or thre years (they guess) I'll have my blood monitored, I'll have occasional scans, and if (and when) the tumours start growing again, they'll put me back on chemo.

Yes, I'm disappointed, no I'm not surprised. But the disappointment is quite hard to take. 

You don't tend to know you're being optimistic until your hopes are disappointed. Equally, you don't realise you're dreading bad news until someone gives you better news than expected.

The situation is that I'm not placid.

I thought I was. I had, pretty much, settled in my mind that if they think there's a chance, even a slight chance, that surgery might get rid of all the tumours, I'd just go for it. Actually, I had said as much.

But then... there were other thoughts. One friend said: "But what if they carve you up, and it doesn't affect prognosis at all?"Point. It's perfectly possible, too. I could spend three months recovering from an exploratory operation (mainly, to remove the primary tumour) to make sure there aren't lots of others that the scan missed - and then go for a second operation to get rid of secondaries. And then I could spend three months on chemo to clean up the bits... and then, I could still die in 2011 - which is what I could expect if I just leave everything in there, and have occasional treatment to slow it down.

Then again, I could "manage" the illness, and instead of getting just two years, get 22. My friend Ray tells me his father got my diagnosis 20 years ago. He's had four bouts of surgery, but he's still here. What does my oncologist think?

"We simply don't know," she says, candidly. Well, yes.

So in all this, we have a wait till Friday (when I see the oncologist again) and she'll tell me what the surgeon thinks - if he's been in touch. But (she warned) he may just write to me and say "Do come in for a consultation."

Here's where the mind plays tricks! First, he's got to make a call about how much chance there is of successful surgery. If he thinks there's not much hope, he probabyl won't call me in. And second, even if he does, I still have to resolve the confusion in my mind. And so I resolve to wait patiently. What I don't notice, is the little subconscious imp, which says:

"He hasn't been in touch. If he was going to get in touch, you'd have heard from him. So the first you'll hear, is when you go to see the oncologist, and she says: 'Ah well, it wasn't a guarantee he'd be able to cure you even if he could operate, you know...?' and indeed, you know perfectly well  it isn't."

True, true, you tell the imp. And you miss the sub-text: "He thinks there's no hope." It's not really a sub-text; it's overtly expressed (the way these subconscious imps do it). But that's how you miss it. And then...

... the letter arries from the surgeon: "You have an appointment."

What's your reaction? Relief! He hasn't turned me down!

Honestly, it's like being a 15 year old in love. "Did she look at me? Was she looking pleased? Is she angry? is that something I said?"

So I'm seeing the surgeon on 21st (two weeks today) and we'll discuss it, and I'll have not a clue what's happening till then. And, secretly, bits of my mind will start coming to judgements, and not telling me. And I'll only realise what they were at the point where they turn out to be wrong...

For those who have not seen a real live PICC line, the photo attached will enlighten!

I wanted to have something to give scale, so took a couple of shots including my finger. Sadly, they were out of focus. But you can fit those two green "taps" into the palm of my hand; and the long plastic line is less than a millimetre in diameter.

The hole into which it disappeared in my upper arm is now an almost invisible pimple. The 40-odd centimetres of the line length were just enough to get from that hole, through the main vein, into the heart.

I'm getting used to being without it!

Of all the things I might have expected from today's oncology clinic session, the one I was absolutely not expecting, was to come home without my chemo-delivery enhancement. I had utterly bonded with the catheter they use to take blood samples and to feed cytotoxins into my tumours. And it's gone!

What the oncologist said can be easily summarised: "I've sent your scans to a surgeon, to see if he thinks he can operate."

Naturally, the summary is a gross misrepresentation of the conversation! But at the end of the session, when I got up and went upstairs to obey her command ("Get that PICC line out, now...") I was pretty sure in my own mind that that is the main reality. We have to wait till the surgeon says "Yes, it's worth opening up his tummy," or "No, that's good progress, but it's not safe to try surgery..."

If the second is what happens, then the doctor thinks I'm good for another two years, maybe more, just "managing" the illness. 

Managing it is a question of scans every three months, and more chemo whenever the scans show a resurgence.  Guessing how long that can carry on is just that: guessing. She speaks of two years, but she also admits that it is impossible to predict; one patient can recover quite well, the next may suffer a recurrence within weeks of ending chemo. So I'm going to take the view that she reckons two years is a pretty safe bet, but is well aware that it might be longer.

That's it. When I know more, I'll reveal more. But where I was honestly convinced that I'd be spending next Monday in the chemo suite, I now find myself looking forward to two weeks guaranteed good health, and time to get things done.

Counts as good news, for me!