Sunday, 31 August 2008

15. Cocoon days

I spent the past few days in a cocoon.

It’s called Grayshott Hall and for the annual budget of a small European Republic you can get a large luxurious room with an enormous soft bed, a bathroom the size of Daniel’s flat, a beautiful view over National Trust Land - and most importantly, a wi-fi connection. You can stay in touch while being pampered.

At Grayshott, there’s an army of middle-aged women to cover you in sweet-smelling liquids. I have been rubbed with lavender and jasmine oils and I smell absolutely gorgeous. Mary has been doused with geranium, which makes her skin 20 years younger and makes her pee a lot. This is apparently a good thing.

Mary opted for holistic body massage and cranial osteopathy (obviously), but I wanted something more exotic. One of the treatments is called Reiki – and rather like women’s beach volleyball – I wish I’d discovered it earlier. Reiki is extraordinary. For most treatments someone comes and washes you or massages you or something. But in Reiki, a woman comes and stands over you for about an hour and does absolutely nothing at all. Then she says she’s cleared your energy channels. It’s sheer genius. The training must take minutes.

I’m really hooked on these treatments now and can’t wait to try some more. I’m particularly keen on Feng Shui - where your energy channels are apparently aligned with bedroom furniture. After much meditation and slow movement, you gently ascend to IKEA. I’d also like to try Thaksin. But you can only get it in Manchester and you end up owing the Thai government 80 billion dollars.

Anyway – in all seriousness – Grayshott was a great success, and we really did get a break from the real world, which we badly needed. Even better, while we were away, Susie and Victor returned home to take care of Dad, who is now out of hospital and back in the care home in Muswell Hill. He's indestructible.

Tuesday, 26 August 2008

14. Staying perfectly still

The picture was taken by Hugh Sykes when we were working for the Today programme in the late seventies. The late seventies, by the look of things, is a reference to the percentage of alcohol in my blood at the time, but whoever was with me in the pub was undoubtedly pleased to hear they were my bestest mate and I bloody loved them. Alternatively, they were receiving my latest lecture on the intricacies of third division footballing styles. Whatever, I publish it here now because I’m a bit short on laughs this week.

Elderly parents are the major topic of conversation of my generation. Many a good party has been ruined by the question “are your parents still alive?” Mine are 95 and 91. They’ve been old for nearly half my lifetime.

Dad was taken to hospital in the early hours of Sunday morning. This is nothing new. I’ve been answering emergency calls of this kind for 25 years. Except this time the call didn’t come to me. I’ve been excused - due to special circumstances.

Instead, the care home he’s been staying in for the past couple of weeks rang my sister. My sister was in Israel. So she rang my nephew, Richard. He was in Ipswich. So it ended up at Daniel’s door and Daniel valiantly saw my father through a sleepless night in the A&E department of the Royal Free.

In the morning, my mother rang Mary to find out what we were doing about dad, and we had no idea anything had happened. When you’re already under pressure, it’s hard to stay cool when more pressure is piled on. So Mary and I went off to the hospital, by which time Richard had arrived to take charge of the situation. Dad was stable – if very confused – and the doctors and nurses at the Royal Free had responded admirably. You fear the NHS might not be much concerned about a 95-year-old man, but it was.

So here’s where we are now. My father is in hospital. There are many serious things wrong with him, yet he will probably survive. My mother is in sheltered accommodation with some support from a carer. She is increasingly frail. My sister is on her way back from Israel. My nephew is in the front line until she arrives.

Many of you are journalists and all of you can think of a million unanswered questions. The contingency planners amongst you will be in a flat spin by now. There are no right answers. Here’s mine (for the time being) – and I will be judged on it:

If you’re stuck on a bus in Mexico (and this happened to me) in 100-degree heat with 95 percent humidity, and the air conditioning breaks down, and you can feel the panic rising around you, the most sensible course of action is to stay perfectly still. The more you huff and puff and fan yourself, the hotter it gets. Just stay perfectly still.

Friday, 22 August 2008

13. Comfort for all

The Marie Curie Hospice offers counselling to friends as well as families of cancer victims. I was asked: do any of your friends need counselling Mr Rose? Blimey, I should say so. Just about all of them. Peter’s diary problems alone would keep them busy for a decade. Dave K still thinks it’s the 1970s. And don’t even think about sorting out Jonathan’s obsession with the Balkans. Still, it’s nice of them to ask.

The hospice has a soothing presence – a bit like my acupuncturist, Mr Ming. I believe that acupuncture is about as effective as knitting, but Mr Ming had a calming effect on me during the bowel operations. “Ah Mr Lose,” he would say, “Did you make wind today?” Yes, Mr Ming, I make wind every day. That’s good, he’d say, then stick needles in my head.

A pet is apparently a great source of comfort to cancer sufferers, so Mary has decided to get a cat. Because she likes to recycle things, she opted for a rescue cat (rather than buying new) even though this probably means we’ll end up with a wild-eyed schizophrenic with a history of kitten abuse. It also means we have to deal with Cat Woman. Cat Woman is from the Royal Society for Barmy Cat Rescuers (or something) and she left a message on our answerphone demanding – yes demanding - to vet our home according to her society’s strict criteria of cat-owning suitability. Two days later she turned up. Mary was concerned I might say something inappropriate so I was unfairly banished to the bedroom out of harm’s way. Well, Mary needn’t have worried. Cat Woman simply loved our house. In fact, she wouldn’t leave. In fact, she sort of indicated that, never mind the cat, she’d quite like to move in herself. So, in the next few weeks, we’ll be taking delivery of either a mildly deranged feline with social issues, or a middle-aged woman, ditto.

I’m going to the Hospice next Tuesday for some more blood tests. The trouble is I’ve given so much blood over the past few months that my veins are seizing up like a junkie’s. They have to hunt around for ages for somewhere soft to stick the needle. Then they take an armful or so - and don’t even give me a biscuit.

The blood tests don’t, of course, tell you much. But then there’s a lot I don’t want to know. I don’t want to know, for example, how far the cancer has spread. What’s the point? It will tell me soon enough.

Tuesday, 19 August 2008

12. No news is good news

I have nothing to report – and this is a good place to report it. No news is good news as far as I’m concerned and if I can, I’d like to have many more weeks of nothing much happening.

My workload has eased considerably since I decided against treatment. I rang the nurses at the hospice offering to track down all my medical records and they said not to worry, they’d do it. That’s amazing. It’s such a relief to escape the battery of administrators and secretaries who make you feel such a pest, causing them a lot of extra work just because you want to live a bit longer.

All this spare capacity has given me lots more time for socialising and answering emails. All sorts of voices have emerged from the past and it’s a real pleasure hearing them again. It’s surprising what an interesting life I had.
You'll be pleased to know that, following intense pressure from you lot, I have finally sent the letter to Prof Cunningham. And I promise to publish the reply. I have also tried again to find out from George Hanna, the surgeon who took out my gallbladder, how I picked up a nasty pseudomonas virus in the Harley Street Clinic. I first asked him about this on July 10 but all I’ve received so far is an invoice for £190. That’s private medicine for you.

The in-laws, Pat and Kevin and Veronica and Dave, came to stay for the weekend and we hardly mentioned cancer at all. This is because cancer is less interesting than sailing (Dave) or Mary’s new watch (everyone else). With reassuring normality, we went out for a curry on Friday and steak and chips on Saturday. Susie and Victor, Dan and Katy, and my parents, all joined us for lunch on Sunday, providing the kind of mass family occasion we rarely had when I was well.

Pain control is still a bit of an issue (although watching beach volleyball in the middle of the night is a help). The Fentanyl patches don’t seem to have kicked in so I’m continuing to take industrial quantities of co-dydramol, my painkiller of choice. Not many people can do this because, with so much codeine, it makes them constipated. But not me. I don’t have a large bowel. A rare plus side to my diminished physiology.

In fact, I’m missing a few other bits as well. Investigating my prostate a few years ago, my GP said she needed to check my rectum. Fine if you can find it, I said. The last time I saw it was under a bell jar at the London Clinic.

Friday, 15 August 2008

11. Mary's birthday

Is it possible for Mary to have a happy birthday under current circumstances? Here’s what happened.

I am not very keen on shopping. That’s an understatement. I am not keen on shopping in the way Russians are not keen on Georgians, or China isn’t keen on civil rights. I am also not keen on department stores. Here are the three worst places on Earth in reverse order: Devil’s Island, Guantanamo Bay, IKEA. And I am also not very thrilled about going into the West End, which is entirely populated nowadays by tourists from the Planet Idiot, whose major talent is to chew gum and say ‘yeah right laterz’ on the phone at the same time.

Despite all this, Mary and I chose to spend her birthday at Selfridges. To help things along, we saved ourselves the unpleasantness of the Tube by driving in to the West End (oh come on, be reasonable, I’m doing enough already to reduce my carbon footprint). On arrival, we went straight to the watches and jewellery section where I instantly became a discerning shopper by steering clear of any brand I’d heard of (Gucci, Burberry etc) on the basis that if I’d heard of it, it was bound to be uncool. We wandered around a bit, chatting to obsequious shop assistants, before exchanging my Mastercard for a Rado watch and Georg Jensen bangle. (No, me neither). Mary noted these items were quite expensive but I said she was worth it. The shop assistant was visibly moved by this, but Mary looked a little nauseous.

By a happy coincidence, the jewellery section is right next to the food hall. So we lunched on a fabulous salt beef sandwich. Then we bought the six largest freshwater prawns on the planet, a perfectly hung piece of fillet steak, and a box of Leonidas chocolates (because the pineapple creams are unbelievable).

In the evening, the kids came round and we consumed it all, along with some salads, melon, prosciutto and Martha’s fairy cakes, and washed down by a bottle of Villa Maria Reserve Sauvignon Blanc and a Napa Valley Cabernet Sauvignon provided by Katy’s sometimes boyfriend. We chatted away for a couple of hours and then we sang Happy Birthday. And it was.

Wednesday, 13 August 2008

10. My new team

There are three new people in my life and I feel amazingly reassured to have them. They are Adrian Tookman, the head of palliative care at the Marie Curie Hospice in Hampstead, Jane Eades, his specialist nurse, and Tony Day, the Macmillan nurse who’s been looking in on me for the past few weeks. Along with Amanda Sutton, my GP, they’re my team from now on in. And I’m delighted they’re on my side.

None of them is an oncologist. Because an oncologist administers chemotherapy and I’ve finally decided not to have any. The odds just aren’t good enough. Chemotherapy can prolong life but it can also kill you. I’m better off with food supplements, Mary’s vitamin gobstoppers, boxes of Belgian chocolates and sheer willpower. I feel a thousand tons lighter having made the decision.

So here’s my immediate plan. I’m going to get some stronger painkillers (Fentonyl patches which you wear for several days at a time). I’m going out to lunch with some friends and pay for it with my newly-granted disability allowance. I’m going to blow up Barclays Bank. And I’m finally going to send that letter to Professor Cunningham. (Yes, I know you were wondering about that, but it was always more important to write the letter than to send it. Now that I’m leaving the Marsden it’s the right time to deliver it).

Tomorrow (August 14) is Mary’s birthday. We’re going shopping at Selfridge’s for something ludicrously expensive, and we’ll pick up a load of delicacies from the food hall to tempt our flagging appetites. Happy Birthday or bust.

Tuesday, 12 August 2008

9. In the middle of the night

In the middle of the night I woke up worried that this blog lacks dramatic tension. You see, I’ve read other cancer diarists and been struck by the fact that their narratives have all been motivated by a central thread - they all believed they were going to be cured (or at least live a long time). But not me. Redemption was never on offer. The outcome was pre-written from the start. I need a dramatic infusion.

So here’s a thought. In a more exciting world, not the dull grey one of blood tests and CT scans, I would surely have glimpsed somebody from the corner of my eye. He would have appeared during one of those gloomy hospital visits, while the doctors were trawling through my notes casually delivering the latest piece of bad news. He'd have been a shadowy figure in the background, a dark spectre maybe, in a hood with a scythe.

In Ingmar Bergman’s film, the Seventh Seal, a mediaeval knight returning from the Crusades challenges such a figure to an epic game of chess. If he wins, his life is saved. Good idea. I will offer something similar. But with Scrabble. I mean, I’m not bad at chess but I think my Scrabble chums will agree that when it comes to seven-letter words I’m virtually a legend. Death defeated by multiple anagrams. I am issuing the challenge.

Most of this blog is written in the sleepless hours of the night. I write far more than I publish. In the cold hard daylight I see what I’ve written and edit it, always cutting it at least in half. This is the bit you get. The nightmare I keep.

Monday, 11 August 2008

8. Vitamins can kill

Who says vitamins can’t kill you? Mary ordered up a bucketload from some place in Bristol and when they arrived they were the size of horsepills. Even chopping them in half nearly choked me to death. And it turns out I’m supposed to swallow four of these gobstoppers a day. Heaven knows what size mouth you need to benefit from alternative medicine.

The vitamins are, of course, a substitute for chemotherapy which I realised, more or less from the start, wasn’t going to significantly prolong my life. They’ll be combined with food supplements, body builders, tubes of Smarties, and anything else I can get down my neck to keep me going. At 12 stone something, I’m still at fighting weight.

I’m also fighting mad about what’s happening at QPR. Sue me if you like, but I think the new owners represent everything second-rate about modern sport. Saturday’s opening game was a display of the worst kind of commercialism. So crass. So naff. First we had the pyrotechnics. Not exactly Beijing standard. More like two sparklers and a rocket. Then, the introduction of the new sponsors, Gulf Air. A big screen revealed sterile pictures of so-called airline employees - all looking so impossibly smug, you’d want to shoot down their planes, not fly on them. And these pictures are played while the game is going on. Yes, during the game. The only reassuring thing about the whole event was the participation of four cheerleaders, so low rent they had to be from the White City estate. And therefore the only authentic part of the proceedings. QPR won 2-1 by the way.

Tomorrow I’m seeing my Macmillan nurse and then visiting a hospice in Hampstead. I’ve learned to look for what I call the Kindness of the Eyes. Most doctors and nurses are objective and professional and keep their distance. But occasionally some reach out to you, saying silently with their eyes that although they don’t know you, they’re really sorry. This is not sad at all.

Thanks for all your emails – and please keep them coming, if only to say hello. Thanks too for the compliments about the writing. Quite a few said I should have been a journalist. Now you tell me.

Thursday, 7 August 2008

7. Choir search

Does anybody know a good gospel choir? The reason I ask is that I’d really like to provide some uplifting entertainment at my funeral, and there’s nothing that raises the spirit as gloriously as a gospel choir. I’m open to suggestions about what they sing, but I was thinking maybe Otis Redding or Aretha Franklin. Or Bill Withers’ “Lean on Me” – that would be good. Of course, they could still do the “praise the Lord” stuff as well if they liked. I wouldn’t mind at all - and my extended family would expect that kind of thing from me anyway.

My eco-aware wife is thinking of something, well, more ecological. I think she wants to turn me into a tree. Which would be OK with me. I’d be happy to be an apple or magnolia or even a plain old rose bush. Actually, I’d like to be somewhere where the kids could come to talk to me. I’m sure that my words from beyond the grave will be much more pertinent than on earth.

I’ve spent this week in the Lister Hospital in Chelsea. I went to see the prof at 9.30am on Monday with a few minor bladder symptoms and ended up on the operating table at 5.

In my Top Ten hospitals in London, the Lister has got to rate as number one. The nurses were just lovely, the receptionists helpful, and my bright, clean room had a pleasing view over Chelsea Bridge. My surgeon, the aristocratic Professor Woodhouse, turned out to be a real charmer, with an admirably clear vocabulary to describe my diminishing options.

The prof explained that the pancreatic cancer had spread outwards to the top of the bladder and that he’d needed to cut out a bit of it to keep my bladder functioning. The bladder recovers quickly and he was betting that the bladder lining would heal quicker than the cancer would regrow. Good game eh?

Actually, it wasn’t as bad as it sounds. I’ve been losing bits of me on the operating table for years. and I'm quite used to it. In fact, I often imagine the confusion of pathologist called upon to do my autopsy; scratching his head; saying hang on, where's everything gone?

The operation was relatively swift, the pain control was excellent, and next morning I was sitting up in bed eating cornflakes. Once again the real burden fell on Mary and the kids, forced to drag themselves across town to see me. All I needed to do was spend the following days lolling around, reading books and watching daytime TV (which I enjoy out of all proportion to its value). Of course, it will never be the same without Carol on Countdown.

All this has again led to the postponement of any treatment and I’m now in search of a new oncologist nearer home. Not that it really matters. The cancer distributed itself through my body long before anyone was aware of it, making it far too entrenched for any targeted treatments. You can’t direct radiotherapy or take a cyberknife to miscellaneous particles scurrying around your system, most of which you can’t even see. All you can do is inject yourself with gemcitabine, a blunt instrument with this type of cancer, with a success rate of just six percent, and where success is measured in weeks rather than months. You can add other drugs to the gemcitabine, but they greatly increase the level of toxicity and don’t improve the odds much in the process.

So I’ve returned home to a rather strange To Do list. It reads: find new oncologist, arrange hospice visits, write nasty letter to Barclays, pay car tax, chase QPR tickets.

The football season starts on Saturday and a few weeks ago I honestly didn’t think I’d make it. But I did. In the needle match against cancer, I’m still ahead on goal difference.

Sunday, 3 August 2008

6. On asking "how are you?"

There’s an obvious problem when people ask “How are you?” My father, who’s 95, solves it by saying “still here”. Which was funny for the first fifteen years or so, but has worn off a bit.

For me the best solution was offered by a nurse at the Royal Marsden. She said: “How are you today?” I replied testily: “Fine - apart from the cancer.” She snapped back: “That’s not what I asked. What I asked was: how are you today?” The key word is Today. One day at a time. And today, actually, is not too bad. Better than yesterday anyway.
In fact, I've had this problem before. Four years ago, I had major surgery to remove four or five feet of large bowel. When people asked how I was feeling, I'd reply with a single word: gutted. Gave me a laugh anyway.

In the weeks since the diagnosis, people have reacted to my cancer in different ways. Some are thrown in on themselves, considering their own futures, re-evaluating their own lives. Have they been good friends, good parents, good partners?

Others have been scouring the internet for solutions that “must be out there somewhere”. Medical trials, experimental drugs, ancient healing arts, spiritual intervention, prayer, reflexology, vitamin c, pomegranate juice. There are people with pancreatic cancer, apparently condemned by doctors to live just a few weeks, who years later are climbing Mount Everest and trekking to the North Pole. Thanks to radiotherapy and an awful lot of bean sprouts, Patrick Swayze will soon be back at the potter’s wheel with Demi Moore.

One or two people have been unable to look at me. They busy themselves around me but simply can’t bear to make eye contact. It’s not that they think cancer is catching; it’s just that they’re frightened of what they’ll see. A ghost maybe.

But mostly I’ve had a lot of very nice hugs - and the conversation has been much the same as it ever was. Gossip and scandal about people and social life and work and football.

And although millions of books have been written about it, and there’s even something of a vogue for cancer diaries, the disease really isn’t that fascinating. As I’ve said before, it’s just shadows. Shadows that are now part of me. Attack the shadows with chemotherapy and you attack the rest of me at the same time. Feed me – and you feed the shadows. Me and my shadows, walking down the avenue.

Yesterday, I had my first real wobble. New symptoms rendered me sick with tiredness and I barely got out of bed. As a result, a sudden panic that I was running out of time propelled me to the computer to frantically tidy up my finances and start constructing a “handover note” to Mary. This note may take some time. I mean, it’s easy enough to describe how to access my pension and get hold of the deeds to the house – but it takes time to explain the correct way to stack the dishwasher, how to change channels on Freeview, or what to do when you lose the toolbar on Word (again).

First thing tomorrow morning I’ll be back at the Marsden seeing yet another distinguished medic, Professor Lord Christopher Woodhouse, who also happens to be the 6th Baron Terrington. No doubt this will be followed by loads more pricking, prodding and poking, albeit at the behest of a genuine aristocrat. “He not busy being born is busy dying” is a line from Dylan, and I now know what he’s getting at.

Last Wednesday, we celebrated my dad’s 95th birthday. Yes, he’s 95 and my mum’s 91. We’re a very long-lived family. Ooops.