5. Brighton Weekend

We spent the weekend at a massively expensive hotel in Brighton. Well, I’m not saving up for anything. And the food was terrific - as was the weather, the coastline and the conversation.

It was Katy’s 25th birthday and we’re all very proud of her because despite everything that’s going on at the moment, she’s been promoted at work and named “employee of the month” (which is a good thing, obviously). Dan’s girlfriend, Emily, came down, as did Katy’s oldest schoolfriend, also called Katy, and we all had dinner together and it was just lovely. A brighten weekend (see what I did there).

A word of caution, however, about the Hotel du Vin. It’s all very stylish of course – but what exactly do they mean by the term superior rooms? Superior to what? Superior to the inferior rooms down the corridor? And you’re stuffed if you have a car. Because you have to park it in a foul-smelling graffiti-ridden underground bunker which Brighton Council will charge you £15 for the privilege. In this blog, you get free hotel reviews with every health update.

I do feel the world is conspiring against me unduly. The devil – disguised as Virgin Media – disrupted my emails and wiped my inbox. Then he forced the remote control on my car to stop working and made it impossible to fit a new light in the oven. Finally he dressed up as Barclays Bank and sent my ISA into oblivion. He’s currently working at the Chelsea Building Society (in case you’re thinking of opening an account there).

On my last visit to the Marsden, I was shown pictures of my cancer from the latest CT scan. What a disappointment. Somehow I’d expected something mean and aggressive with sharp teeth, like a fluorescent Pac Man or mad grinning space invader. Nothing of the sort. Instead, it’s a couple of miserable dark patches on a monochrome screen, with a few other dark patches as offshoots, all barely distinguishable from the rest of my dull grey interior. It doesn't even have a solid shape. It's just shadows.

The object of the scan was to decide on treatment. But I’ve been overtaken by events. I have new symptoms. I’ll spare you the details, but suffice to say, they would delay chemotherapy even if I thought time was a factor. (Which it isn’t, because nobody can predict anything). I will now probably be referred to yet another specialist at yet another hospital, where once again they will take my history and mislay my notes, which they will say don't really tell them anything anyway.

Indeed, looking back over the past few weeks, I have to conclude that my tours of London hospitals, with all the blood tests and CT scans and MRIs and liver biopsies; all the poking and prodding and inserting of needles; all the hot, sweaty, miserable tube journeys, haven’t really added anything significant to the original diagnosis on June 25. I could write everything new I’ve learned on the back of a postage stamp.

Meanwhile, my sister-in-law Pat (the cancer expert) kindly sent me John Diamond’s book about his cancer treatment. Somehow he managed to stay cheerful. Me too. No idea why. Maybe it’s a journalist thing.

4. People are kind

I’ve been socialising this week. Very jolly. It may be a bit late to twig this – but people are kind. They say “anything I can do” and mean it. Come and stay with us; borrow our homes in France or Italy or Austria; even have my air miles (anywhere you want to go as long it’s via Qatar). If by chance this illness turns out to be some mad mistake, we could travel the world and live rent free for years.

People are generous. They come at their own expense from far away places – like San Francisco and Twickenham. And I’ve become generous too. No collection box is passed without donation. Waiters get bigger tips to boost the economies of Eastern Europe. Big Issue sellers must think it's Christmas.

The big news about pancreatic cancer this week is actor Patrick Swayze. Allegedly given a few weeks to live, he sought radical treatment in California and is now apparently back at work. The details are elusive but I've decided it’s worth pursuing, especially if it turns out that the Royal Marsden cannot help me. Also I'd quite like a shot at the remake of Dirty Dancing.

I’m going to the Marsden later today for a CT scan and back again tomorrow for a consultation. No doubt they’ll ask again for my medical history and once again I will say: how long have you got? Which is strange because in my mind, I’m rarely ill. I always considered myself strong, both mentally and physically. I really don’t remember having many days off work. Yet my medical notes read like War and Peace - they'd need to be drastically edited for the paperback edition.

There was illness, obviously, but somehow I wasn’t there. In many ways, I still haven’t arrived – and that’s why I’m still hoping.

3. In praise of normal

There are some new readers to the blog, who are very welcome, but who probably shouldn’t start here. Better to scroll down to the diagnosis and start there (like I did). But before you go, here's a short story:

“A man goes to see the doctor for the tenth time in a fortnight. The doctor says the trouble with you sir is that you’re suffering from acute hypochondria. Oh no, says the man, not that as well.”

Yesterday, Daniel, Richard and I drove 30 miles up the A1 to see QPR play a friendly at non-league side Stevenage Borough. It strikes me that if I get to meet my maker I might find this difficult to explain. You spent your last precious hours on earth doing what?

Well, you see, it’s the normality of it. I have changed my view of normality. I used to equate normal with unimaginative or dull. I conspired to undermine it, often with gleeful mischief. Now I find normal equals happy. I am walking down the street with Mary and I am happy. I am having a curry. Seeing friends. Chatting on the phone. Tapping away at the computer.

After my liver biopsy, I was tired and lay on the bed drinking tea. It felt normal. Katy was tired too after work and came and curled up on the end of the bed. Daniel was in a chair recalling his adventures in Cuba. A normal family. Happy.

I am gradually resolving my dilemma about treatment. The “someone called Janine” mentioned in the previous entry turns out to be a lovely, helpful, research nurse who’s trying to track down my medical paperwork. On Friday, she kindly arranged for a research scientist from the Marsden, Dr Watkins, to call me to discuss statistics. Specifically, the statistical probability of chemotherapy actually making any difference. It was good of him to call. I took the best part of an hour asking him questions he couldn’t scientifically answer, because the figures are so small, the data so raw. That’s what they’re working on now.

Pancreatic cancer is usually (but not always) very aggressive. No-one has offered an opinion about how fast mine is moving. Chemotherapy can slow it down. The general consensus is that some treatment is better than none. Probably. Depending. Good luck.

I’m due back at the Marsden on Thursday. We’ll see.

Meanwhile, I’ve changed the layout of this blog and stopped the comments. I forgot that blogs are very public and can attract random emotional outpourings from people I’ve never met. No thanks. The only drama queen allowed here is me. Comments by email on the other hand are greatly welcomed.

2. To treat or not to treat

I am on a tour of London hospitals. Last Thursday (July 10), it was the Wellington, overlooking Lords Cricket Ground. It was a lovely sunny day, England were playing South Africa outside my window, and I was having a liver biopsy. No need to tell me how to have fun.

Actually, it was OK. The biopsy was virtually painless and only took about half an hour. They numb you with local anaesthetic, then stick a needle inside you. There’s a sharp thump as they snip bits off your liver. But you have to lie flat for five hours afterwards in case you bleed internally. Luckily, I was entertained by the cricket on the telly and by a Hungarian male nurse called Czaba, who was a dead ringer for the camp Austrian fashionista played by Sacha Baron Cohen, when he’s not being Borat. “Cricket, omygod cricket, don’t talk to me about cricket,” he lisped in an Austrian-sounding accent. “When I was au pair with this English family, they said hit the ball and then run, and I said run where, where do I run, omygod.”

The reason for the biopsy was to establish whether the lesions on my liver were offshoots of the mass on my pancreas. No-one ever uses the word cancer. They say mass, or tumour, or lesion, or suspicious cyst. But we all know it’s cancer – might as well say it.

The results were sent to Prof David Cunningham at the Royal Marsden in Chelsea. But don’t imagine this happens automatically. If you’re a cancer patient, you have to organise this yourself, chivvying away at doctors’ secretaries, finding phone numbers, checking appointment times, and in one case actually driving to the London Clinic to pick up the cd of my CT scan. It’s quite exhausting this dying business.

I never really wanted to go the Marsden on the basis that the tube journey alone would probably kill me. But I was assured that Prof Cunningham was the best in the business and that the Marsden was running a unique drugs trial for pancreatic, er, disease.

This is true – but unfortunately the experience at the Marsden was the first one I’ve had since the diagnosis which I would have to describe as harrowing. I’m now going to cut and paste the letter I’m going to send Prof Cunningham when he returns from holiday:

“Dear Prof Cunningham,

I am writing to you, constructively I hope, about communicating bad news to new patients.

In the past few weeks I have visited many hospitals and spoken to many doctors, but my meeting with you this week was by far the most dispiriting.

Let me explain it from the patient’s point of view.
My wife and I are ushered 25 minutes late into a room where the chairs are arranged so we cannot sit together and provide physical support for each other. There are two women in the room, who do not acknowledge us or explain who they are. One is sitting on the bed, texting, or filling in forms or something.
You begin to take a medical history of facts that are already in the papers you have. Suddenly you get up, unexplained, and leave the room to take a call. You return and whisper something to one of the women.
You then do a cursory physical examination without saying why.
Then a man in a suit comes into the room, unexplained, sits down, answers his phone and sends a text. He asks a question which has already been answered and you are a bit sharp with him.

Gradually, we get to the point of all this coming and going and texting and phoning. Someone in the room is about to die and it happens to be me. Perhaps I will be suitable for a clinical trial. Perhaps BUPA will help fund my participation. There are other options but all will lead to my imminent death.
Someone called Janine is then summonsed and my now shell-shocked wife and I are escorted to a windowless room which has two chairs for three people. Janine begins her explanation of my options sitting on the floor.
Later, my wife and I sit together on a sofa in the corridor. My wife is sobbing that “they’re awful – they have no respect.”

Now, I understand that you’re an eminent scientist dedicated to finding ways of prolonging life. I understand you’re extremely busy and pulled in many directions. And I understand that you and your team cannot become attached to patients who may all be dead soon. And, frankly, I’m a resilient soul who can withstand a bit of emotional negligence. But my wife was in pieces. You could do better.”

So, as of today (July 18), here’s where I am. I am talking to the Royal Marsden about joining their clinical trial. This would involve taking an intravenous cocktail of four toxic drugs – two kinds of chemotherapy, two biologic. The drugs kill everything that grows in your body. There’s a good chance they would stop the cancers growing – but at an unknown cost.

The alternative is to let the cancers take their course and try to stay well as long as possible. I am still eating and sleeping well, still getting out and about, still finding things funny, still enjoying life. Should I trade quality time now for more time (of unknown quality) in the future?

1. The diagnosis

This blog is about my last days or weeks or months. Right now, I have no way of knowing.

I'm writing here because it's convenient for family and friends and because I want everyone to hear the facts directly from me.

I think it's best if I start with the email I sent to old friends when the diagnosis was confirmed on July 7th 2008.

Hi all,

I know I haven't been in touch for some time - and actually I wish I wasn't getting in touch right now. This is not an email I'd ever want to write, but word is getting out now, and because each of you is special to me, I want to tell you myself.

This isn't pleasant, so if you're feeling fragile, better look away now.

On June 4, following weeks of intermittent (but not debilitating) pain, an ultrasound examination discovered I had a gallstone. So, on June 17, I had a small operation to remove my gallbladder by keyhole surgery . Not a big deal. Just another troublesome body part to shed (and I've shed a few of them). I went home the following morning feeling fine.

A week passed, the operation wounds healed, but the underlying pain was worse. Normal painkillers wouldn't shift it. On Wednesday June 25, I went back to hospital for a CT scan. I was asked to hang around for the result and went off for a sandwich.

Two hours after the scan, I was surprised to find the doctor greeting me with a strangely pitying look. He handed me the pathology report. The scan revealed a 5cm tumour on my pancreas with lots of other little tumours on the liver. Pancreatic cancer is known as a silent killer. You get the symptoms when it's too late. And it's quick. Once it has spread to the liver or other organs, life expectancy is less than 6 months.

Mary called her sister, who's a cancer expert for the NHS, and asked her for the best pancreatic cancer man in London. She gave us the name of Prof Brian Davidson who happens to be at the Royal Free, just up the road from me. He saw me the following day and ordered blood tests and an MRI scan. I got the results last Thursday.

Pancreatic cancer is extremely complicated. There are many different kinds and they affect people in different ways. Mine is inoperable. The only treatment I can be offered is chemotherapy to slow the progress of the disease. The effectiveness of this can only be guaged by a liver biopsy, which I will have in the next few days. I'll then be referred to the Royal Marsden.

I've no idea how people normally react in these circumstances, but I'm completely calm. My offal may be, well, awful - but my brain is untouched. I've never been scared of living and I'm not afraid of dying.

From now on, it just has to be one day at a time, and there are important things in my favour. I've got a fantastic wife and kids, superb back-up from friends and family, and the best care the NHS can provide and Bupa can buy. The pain is tolerable and controllable. I haven't lost my sense of humour (although it may be a bit black for most people's tastes) and I'm still eating OK. In fact, I look and feel quite well.

Obviously, my main concern is Mary and the kids and I'm extremely busy rushing around trying to tidy up everything for them. It's not easy instilling a sense of urgency in banks and building societies. When institutions say they'll send you details in seven to ten days, it's quite difficult to restrain myself. On the other hand, I saw an advert in the paper today offering 42" plasma TVs with nothing to pay until 2009. Pretty tempting for someone in my position.

For the immediate future, I plan to concentrate on Mary and the kids. Their pain is far greater than mine. In the longer term, I would like you come to my funeral and make it a boisterous affair. I'll get my sister to do the catering, so the food should be fabulous.

In the meantime, no pity please. I've had a wonderful life - full of fun and warmth and laughter - and blessed by great family and friends, great work, and great adventures. I've never been one for mawkish sentimentality. Years ago, I wrote in some dreadful student magazine that my epitaph should be "if nothing else he was good for a laugh". Still seems about right.

I'll automatically put you on an email list for updates of what's happening, which Mary will take over when I'm in hospital. We know there's nothing anybody can say. It's OK to just say that.

Look after yourself and everyone else,

Steve