I’m going to end the blog now. I’m sorry but there’s not enough left of me to sustain the person I want to be.
I’m back in the hospice in Hampstead and I think that’s probably where I’ll stay.
I’m fed now by a constant release of painkillers and anti-sickness drugs – and virtually nothing else – and it’s difficult to be bright and breezy under the circumstances.
I could carry on, I suppose, as the next Steve, but the page would fill up with lists of cancer symptoms, and frankly that’s not something I'd particularly want to read if I were you.
So, I’ll end where I began.
In Blog One, I wrote: “I've got a fantastic wife and kids, superb back-up from friends and family … the pain is tolerable and controllable. I haven't lost my sense of humour ... I've never been scared of living and I'm not afraid of dying ...
So 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 ...
Look after yourself and everyone else."
And those are Steve's last words.
Friday, 7 November 2008
Thursday, 30 October 2008
31. Mission statement
The news today is dominated by a piece of low drama at the BBC.
An inane practical joke played by two over-paid TV presenters has thrown the corporation into complete chaos. What a fuss. You’d think the world was coming to end, which funnily enough it probably is, although not over that.
As it happens, I’ve always admired the BBC’s mission statement – to inform, educate and entertain. It was written over eighty years ago, long before anyone had even coined the term mission statement, and has weathered well.
If I could borrow it for this blog, I’d say: Inform – to keep people up to date with the changes. Educate – because cancer is different for any sufferer and every cancer sufferer is different. And Entertain, yes entertain, because I like to think you’re enjoying what you’re reading. Why be miserable? You’ve got problems of your own.
The snag from my point of view is that capturing moments of enjoyment from this diminishing sphere of activity will take rather more effort from now on, and I’m not sure I’ve got enough good material to work with.
Start with the arena. The stage is comfortable enough - but with limited possibilities. Just the bedroom (disguised as a bedroom/lounge/office/pharmacy/operating theatre) and the next door bathroom (and you wouldn’t want to spend much time there despite its luxuriant towels).
Then, the view. Overlooking back garden and allotments. Nice enough, but not offering much variety in a winter landscape.
The timescale is unclear. The inviolable “one day at a time” mantra forbids me to estimate how long, but you can guess that each passing day will involve less and less physical movement.
There are lots of props of course – mostly drugs, including the new Fentanyl lollipop which you rub along the inside of your cheeks to give you an instant boost of opiates. Tastes like fake strawberry and makes you feel vaguely sick. Same as most lollipops.
But really it’s up to you now to help me complete the story. To you, the visitors – whether by phone, email or up the three flights of stairs to see me.
Until now I’d avoided visitors to the house in case I turned it into a mausoleum. It’s a happy house – you’d be amazed how many people have spontaneously said so – filled with light and laughter for 25 years. The trick now is to keep its narrative alive with its assortment of family and friends, doctors and nurses, and one crazee cat.
By the way, in case you haven’t seen me for a while and you’re planning to pop in, you’ll be struck by one thing for sure – the diet definitely seems to be working.
An inane practical joke played by two over-paid TV presenters has thrown the corporation into complete chaos. What a fuss. You’d think the world was coming to end, which funnily enough it probably is, although not over that.
As it happens, I’ve always admired the BBC’s mission statement – to inform, educate and entertain. It was written over eighty years ago, long before anyone had even coined the term mission statement, and has weathered well.
If I could borrow it for this blog, I’d say: Inform – to keep people up to date with the changes. Educate – because cancer is different for any sufferer and every cancer sufferer is different. And Entertain, yes entertain, because I like to think you’re enjoying what you’re reading. Why be miserable? You’ve got problems of your own.
The snag from my point of view is that capturing moments of enjoyment from this diminishing sphere of activity will take rather more effort from now on, and I’m not sure I’ve got enough good material to work with.
Start with the arena. The stage is comfortable enough - but with limited possibilities. Just the bedroom (disguised as a bedroom/lounge/office/pharmacy/operating theatre) and the next door bathroom (and you wouldn’t want to spend much time there despite its luxuriant towels).
Then, the view. Overlooking back garden and allotments. Nice enough, but not offering much variety in a winter landscape.
The timescale is unclear. The inviolable “one day at a time” mantra forbids me to estimate how long, but you can guess that each passing day will involve less and less physical movement.
There are lots of props of course – mostly drugs, including the new Fentanyl lollipop which you rub along the inside of your cheeks to give you an instant boost of opiates. Tastes like fake strawberry and makes you feel vaguely sick. Same as most lollipops.
But really it’s up to you now to help me complete the story. To you, the visitors – whether by phone, email or up the three flights of stairs to see me.
Until now I’d avoided visitors to the house in case I turned it into a mausoleum. It’s a happy house – you’d be amazed how many people have spontaneously said so – filled with light and laughter for 25 years. The trick now is to keep its narrative alive with its assortment of family and friends, doctors and nurses, and one crazee cat.
By the way, in case you haven’t seen me for a while and you’re planning to pop in, you’ll be struck by one thing for sure – the diet definitely seems to be working.
Sunday, 26 October 2008
30. An extra hour
The clocks go back tonight. It’s no longer British Summer Time. It means I get an extra hour. I've decided to use it here. I haven’t added anything in the past few days because I was hoping for something to lift the mood. Well, Not yet. That’s my new most-overused phrase. “Not yet”.
I’m in our bedroom, the airy loft conversion Mary persuaded me to build after only 20 years of gentle nudging. It’s around midnight. I’ve been up here pretty solidly for the past two days. Despite constant coaxing, I haven’t been able to eat anything. It’s because a reverse law of gravity applies to cancer – everything that goes down must automatically come back up. This includes the pain medications and, with due irony, the anti-sickness tablets. They go down – but then re-emerge, often with violent intensity.
So they have to be injected, a process that’s needed both the Macmillan and district nurses, plus – by chance - a rather weird Russian doctor from the out-of-hours service. She wanted to know where to stick the injection. Leg or buttock?
The last district nurse left five hours ago. Like the others, she noted the steepness of the climb to the loft. Mary does this dozens of times a day and can look exhausted.
I’m at a desk in the corner of the room, facing the wall. My laptop is plugged in. Cold perspiration is dripping from my head. I mop it with a yellow towel. I don’t know why I’m sweating. Could be the drugs, could be the cancer, could be the sheer effort of my heart beating to keep me alive. I will probably never know why. But it happens all the time and I feel myself going grey. The remedy, as usual, is to stay perfectly still.
I was thinking about this room. I will be seeing a great deal of it in the near future and I want to keep it looking like a bedroom.
Not a hospital room. I want to hide the paraphernalia of my illness – all the drugs, pills, syringes, sharps box, and cartons of Complan.
Not an upstairs office. I’m forever scribbling notes about the drugs I’m taking, my blood sugar and blood pressure levels, memos to self and doctors’ phone numbers, and I can do without the clutter.
And not another lounge - even though it comes with tv, dvd, dab and all the other digital delights. Mary’s paperbacks are OK – but that’s about it for visible home entertainment.
No, it’s a bedroom, with a handy next-door bathroom, stocked with mulberry towels, and a surprisingly tranquil view over the allotments of Muswell Hill. My intention is to wake to that view in a few hours’ time. It just so happens that the night is one hour longer than I’d expected.
I’m in our bedroom, the airy loft conversion Mary persuaded me to build after only 20 years of gentle nudging. It’s around midnight. I’ve been up here pretty solidly for the past two days. Despite constant coaxing, I haven’t been able to eat anything. It’s because a reverse law of gravity applies to cancer – everything that goes down must automatically come back up. This includes the pain medications and, with due irony, the anti-sickness tablets. They go down – but then re-emerge, often with violent intensity.
So they have to be injected, a process that’s needed both the Macmillan and district nurses, plus – by chance - a rather weird Russian doctor from the out-of-hours service. She wanted to know where to stick the injection. Leg or buttock?
The last district nurse left five hours ago. Like the others, she noted the steepness of the climb to the loft. Mary does this dozens of times a day and can look exhausted.
I’m at a desk in the corner of the room, facing the wall. My laptop is plugged in. Cold perspiration is dripping from my head. I mop it with a yellow towel. I don’t know why I’m sweating. Could be the drugs, could be the cancer, could be the sheer effort of my heart beating to keep me alive. I will probably never know why. But it happens all the time and I feel myself going grey. The remedy, as usual, is to stay perfectly still.
I was thinking about this room. I will be seeing a great deal of it in the near future and I want to keep it looking like a bedroom.
Not a hospital room. I want to hide the paraphernalia of my illness – all the drugs, pills, syringes, sharps box, and cartons of Complan.
Not an upstairs office. I’m forever scribbling notes about the drugs I’m taking, my blood sugar and blood pressure levels, memos to self and doctors’ phone numbers, and I can do without the clutter.
And not another lounge - even though it comes with tv, dvd, dab and all the other digital delights. Mary’s paperbacks are OK – but that’s about it for visible home entertainment.
No, it’s a bedroom, with a handy next-door bathroom, stocked with mulberry towels, and a surprisingly tranquil view over the allotments of Muswell Hill. My intention is to wake to that view in a few hours’ time. It just so happens that the night is one hour longer than I’d expected.
Tuesday, 21 October 2008
29. Slowing it down
There’s one thing that definitely isn’t happening – and that’s waiting around to die. Far from it. Never been so busy. Every day. Renewals, resolution, redemption, matters of life and death. I’ve learned a huge amount in these past few weeks. I didn’t know there was so much to know. I just wish it would all slow down a bit.
And, beyond my own swirling circle, more movement. Babies are born. I have pictures of William and Isabella, and Amy sent me the scan of her latest. Others leave. Another friend, going all the way back to West London school days, loses her husband, even before I’m back from hospital. Can we just slow it down please?
OK, let’s get the narrative in order.
Friday. Lunchtime. Prof Woodhouse and his team are removing the bladder tumour they cut back ten weeks ago, but which has regrown. Trepidation. Another general anaesthetic with unknown outcome. Mary’s sisters arrive from the Wirral. They’re the support team while Mary and kids negotiate another hospital, this time the Royal Marsden. I await the usual bumpy recovery. Confusion, sickness, noise.
And then – for once and at long last – a genuine victory. How long have we waited for this? Something goes better than expected. The operation is successful. It promises ten weeks of remission, and maybe more if it can be followed by some mild radiotherapy. And the Marsden comes through with flying colours. Efficiency with care. It is possible. Doctors who talk to you. Nurses who care. Take a special bow, Charli in the Transitional Unit, and even more so, Jasna in Recovery, the first time I’ve ever been smoothly coaxed back into consciousness. The catering staff were smiling. Even the television was made to work. And yes, I have already written to them. These people do good things every day.
On Saturday, I got up and went home in a taxi. Everyone was elated. It was sunny. We had tea in the garden. QPR won 2-1. Rosey Rose the Crazee Cartoon Cat celebrated in style – launching a massive all-out attack on her own tail. I slept a painless sleep and woke up hungry.
But Sunday – and the phone goes early. Always a bad sign. Dad died during the night. Susie, Victor and I go to my mum’s flat to tell her. Mum is calm. She will carry on as before. They had been separated over the past few weeks and, ironically, this gave them the space to become reconciled. At one point mum looks upwards towards heaven and says “I suppose he’s up there by now.” Susie and I sit with her, while Victor goes into hyperdrive making all the arrangements. It’ll be a Jewish funeral. It’ll be tomorrow.
And here it is. And we have been to Bushey Cemetery. The day starts to blur. The weather holds and the service is mercifully short. Dad’s coffin seems very small. I take up sentry duty around my mother. Dan does the same for me. People are not sure how to address me. It is customary at Jewish burials to wish the bereaved a long life.
Mary is not well, a virus adding to the stress, but somehow we’re getting through all this. I think it’s because we’re not fighting a battle. We’re not battling cancer. We're not battling fate. We’re trying to follow what’s happening in the hope that we can – even for a short while – get ahead of the game. But it’s all so busy and I do wish it would slow down.
And, beyond my own swirling circle, more movement. Babies are born. I have pictures of William and Isabella, and Amy sent me the scan of her latest. Others leave. Another friend, going all the way back to West London school days, loses her husband, even before I’m back from hospital. Can we just slow it down please?
OK, let’s get the narrative in order.
Friday. Lunchtime. Prof Woodhouse and his team are removing the bladder tumour they cut back ten weeks ago, but which has regrown. Trepidation. Another general anaesthetic with unknown outcome. Mary’s sisters arrive from the Wirral. They’re the support team while Mary and kids negotiate another hospital, this time the Royal Marsden. I await the usual bumpy recovery. Confusion, sickness, noise.
And then – for once and at long last – a genuine victory. How long have we waited for this? Something goes better than expected. The operation is successful. It promises ten weeks of remission, and maybe more if it can be followed by some mild radiotherapy. And the Marsden comes through with flying colours. Efficiency with care. It is possible. Doctors who talk to you. Nurses who care. Take a special bow, Charli in the Transitional Unit, and even more so, Jasna in Recovery, the first time I’ve ever been smoothly coaxed back into consciousness. The catering staff were smiling. Even the television was made to work. And yes, I have already written to them. These people do good things every day.
On Saturday, I got up and went home in a taxi. Everyone was elated. It was sunny. We had tea in the garden. QPR won 2-1. Rosey Rose the Crazee Cartoon Cat celebrated in style – launching a massive all-out attack on her own tail. I slept a painless sleep and woke up hungry.
But Sunday – and the phone goes early. Always a bad sign. Dad died during the night. Susie, Victor and I go to my mum’s flat to tell her. Mum is calm. She will carry on as before. They had been separated over the past few weeks and, ironically, this gave them the space to become reconciled. At one point mum looks upwards towards heaven and says “I suppose he’s up there by now.” Susie and I sit with her, while Victor goes into hyperdrive making all the arrangements. It’ll be a Jewish funeral. It’ll be tomorrow.
And here it is. And we have been to Bushey Cemetery. The day starts to blur. The weather holds and the service is mercifully short. Dad’s coffin seems very small. I take up sentry duty around my mother. Dan does the same for me. People are not sure how to address me. It is customary at Jewish burials to wish the bereaved a long life.
Mary is not well, a virus adding to the stress, but somehow we’re getting through all this. I think it’s because we’re not fighting a battle. We’re not battling cancer. We're not battling fate. We’re trying to follow what’s happening in the hope that we can – even for a short while – get ahead of the game. But it’s all so busy and I do wish it would slow down.
Sunday, 19 October 2008
28. William Rose 1913 - 2008
Thursday, 16 October 2008
27. The long view
You have to take the long view. If my life is laid out in timeline form, then this last part – the cancer bit – is just a few blinks. Add in a few illnesses during the past ten years, the casting of a few shadows. All the rest is dappled sunshine. Not bad by anyone’s standards. Put it into percentages: say, 95 percent smooth, four percent rough, one percent ‘bloody hell’.
This weekend I’ll be taking the long view. I’ll be spending it in the Royal Marsden Hospital (not my favourite) undergoing another bladder operation. I went for preliminary tests today and if I’m fit enough, we’ll get it done. As you can imagine, this is hell on Mary and the kids, so please don’t call them. Emails will emerge in due course.
The op itself is no big deal (I’ve had it before) and Prof Woodhouse is again presiding, with his top team. But big hospitals aren’t much fun - with their systems and processes and huge variations in quality of staff and care – and I had hoped to keep away longer. With luck I’ll be out on Monday. From Friday to Monday is just a few blinks.
This weekend I’ll be taking the long view. I’ll be spending it in the Royal Marsden Hospital (not my favourite) undergoing another bladder operation. I went for preliminary tests today and if I’m fit enough, we’ll get it done. As you can imagine, this is hell on Mary and the kids, so please don’t call them. Emails will emerge in due course.
The op itself is no big deal (I’ve had it before) and Prof Woodhouse is again presiding, with his top team. But big hospitals aren’t much fun - with their systems and processes and huge variations in quality of staff and care – and I had hoped to keep away longer. With luck I’ll be out on Monday. From Friday to Monday is just a few blinks.
Tuesday, 14 October 2008
26. Mulberry towels
Dan was quite alarmed when he heard where I’d gone on Monday. He’s gone where? He’s never done that. We should call the police.
I was in Brent Cross Shopping Centre and I can explain. For the first time in my life, I wanted new towels. Great big fluffy hotel-style towels that would grab you from the shower and give you a great big hug. And I wanted new sheets – expensive top-quality super-soft cotton sheets that you curl up in top-class American hotels. And I wanted new shirts and sweaters that fitted my new actual size and didn’t hang off me as if I’d borrowed them from a fitter, older brother. I may be getting smaller – but I don’t want to feel it. I would rather dress to kill than dress to die.
Mary, of course, was very good about this. Normally, she has quite strong opinions on bed linen and so on. She likes things to “match” – a concept I’ve never come close to understanding. But this time she was hugely generous in relaxing her branding policies – although she did give me the odd gentle steer by saying things like “by all means have the yellow, although it is slightly acidic”.
We’ve always had trouble with colours. Mary can tell the difference between literally dozens of different shades of a colour, every one of which I call beige. Well, not every one. Some are magnolia. Our whole house is a variation on beige and magnolia. Wear bright colours when you visit us or we won’t be able to find you. Our new towels, however, are bright purple – a colour faux pas I have finessed by calling them mulberry.
It was sunny at the weekend and I was virtually pain-free. I went to see my dad at his care home. It’s a nice enough place and it didn’t take him long to crack the system there. As he’s quick to point out, the staff love him because he’s never any bother. I gave him a printed copy of the blog. It’ll be the first time he’s seen it.
New emails arrived. Some are still the result of the radio broadcast. I’m amazed people have taken such a lot of time and effort over them. Others date back to my student days in Sheffield. They have a particular tone of voice. It’s the caricature drawl of the oh-so-cool 1967 stoned dead hippy and it resonates across the decades, apparently untouched by any intervening real life (whatever that means, man). I never did a lot of drugs at university. You should see me now.
I was in Brent Cross Shopping Centre and I can explain. For the first time in my life, I wanted new towels. Great big fluffy hotel-style towels that would grab you from the shower and give you a great big hug. And I wanted new sheets – expensive top-quality super-soft cotton sheets that you curl up in top-class American hotels. And I wanted new shirts and sweaters that fitted my new actual size and didn’t hang off me as if I’d borrowed them from a fitter, older brother. I may be getting smaller – but I don’t want to feel it. I would rather dress to kill than dress to die.
Mary, of course, was very good about this. Normally, she has quite strong opinions on bed linen and so on. She likes things to “match” – a concept I’ve never come close to understanding. But this time she was hugely generous in relaxing her branding policies – although she did give me the odd gentle steer by saying things like “by all means have the yellow, although it is slightly acidic”.
We’ve always had trouble with colours. Mary can tell the difference between literally dozens of different shades of a colour, every one of which I call beige. Well, not every one. Some are magnolia. Our whole house is a variation on beige and magnolia. Wear bright colours when you visit us or we won’t be able to find you. Our new towels, however, are bright purple – a colour faux pas I have finessed by calling them mulberry.
It was sunny at the weekend and I was virtually pain-free. I went to see my dad at his care home. It’s a nice enough place and it didn’t take him long to crack the system there. As he’s quick to point out, the staff love him because he’s never any bother. I gave him a printed copy of the blog. It’ll be the first time he’s seen it.
New emails arrived. Some are still the result of the radio broadcast. I’m amazed people have taken such a lot of time and effort over them. Others date back to my student days in Sheffield. They have a particular tone of voice. It’s the caricature drawl of the oh-so-cool 1967 stoned dead hippy and it resonates across the decades, apparently untouched by any intervening real life (whatever that means, man). I never did a lot of drugs at university. You should see me now.
Saturday, 11 October 2008
25. TV fundraising
I'm sure you can’t have missed the huge TV fundraising campaign going on across all channels at the moment for cancer charities in general and my friends, the Macmillan nurses, in particular. Now, obviously, I’m a huge supporter of all this, but it does tend to put a bit of gloomy slant on my own telly viewing.
“Living with cancer can be a real struggle” intones across the whole digital spectrum, no matter what time of day or night. Tell me about it. In fact, tell everybody about it – but not necessarily on every channel at the same time.
I mean, how much money can this campaign really be raising on Paramount Sci-Fi Gold Repeat + 2, or Sky 3 Action Bible Interactive, or Discovery National Geographic circa 1994 (the bits we didn’t show yesterday) channel, or Dave? For a moment yesterday, I thought I’d escape it on Film Four Movies (+1) where they were showing the excellent Kite Runner movie. But then, would you believe it, the dad – the very nice, noble, dignified dad, who’s Afghan for heaven’s sake and could be killed in any number of tragic and exotic ways, goes and dies of cancer anyway.
On Wednesday, my own Macmillan team came to my rescue after yet another “worst night of my life” scenario. Waking around 3am, I was experiencing what doctors tend to call “deep cancer pain”. At least, I assume it was deep cancer pain. Or, put it another way, if cancer pain goes any deeper than that it’s going to come right out the other side.
This propelled me into manic self-medication mode of a particularly furious kind, as I hurled bucketloads of morphine, anti-emetics and tranquillisers down my throat, culminating (inevitably perhaps) in the most colourful display of projectile vomiting since the Beijing Olympic fireworks. At which point, and with Mary’s soothing help, I must have passed out.
Daylight came - followed shortly by the amazingly swift and reassuring appearance of Tony and Jo from Macmillan. Decisions were made with admirable speed. I’d been really sick. So I probably hadn’t absorbed much medication. So I needed it injected. Calls were made, drugs and syringes, procured, injections given. I promise never to forget how lucky I am to have this level of specialist support available at such speed.
The Wednesday crash meant I missed the second part of my survey on spirituality (chapter 19). A shame – because my mention of it attracted the attention of David Webb, the fearless defender who played a central role in what was probably QPR’s best ever team. David (I certainly won’t call him Webb-y) heard my radio broadcast, and dropped me a line, thus forging an interesting and unexpected link between spirituality, finality and football. And it struck me that it was a bit like the 1966 World Cup final in reverse. Some people think the Grim Reaper is on the Pitch… they think it’s all over… well it isn’t just yet.
“Living with cancer can be a real struggle” intones across the whole digital spectrum, no matter what time of day or night. Tell me about it. In fact, tell everybody about it – but not necessarily on every channel at the same time.
I mean, how much money can this campaign really be raising on Paramount Sci-Fi Gold Repeat + 2, or Sky 3 Action Bible Interactive, or Discovery National Geographic circa 1994 (the bits we didn’t show yesterday) channel, or Dave? For a moment yesterday, I thought I’d escape it on Film Four Movies (+1) where they were showing the excellent Kite Runner movie. But then, would you believe it, the dad – the very nice, noble, dignified dad, who’s Afghan for heaven’s sake and could be killed in any number of tragic and exotic ways, goes and dies of cancer anyway.
On Wednesday, my own Macmillan team came to my rescue after yet another “worst night of my life” scenario. Waking around 3am, I was experiencing what doctors tend to call “deep cancer pain”. At least, I assume it was deep cancer pain. Or, put it another way, if cancer pain goes any deeper than that it’s going to come right out the other side.
This propelled me into manic self-medication mode of a particularly furious kind, as I hurled bucketloads of morphine, anti-emetics and tranquillisers down my throat, culminating (inevitably perhaps) in the most colourful display of projectile vomiting since the Beijing Olympic fireworks. At which point, and with Mary’s soothing help, I must have passed out.
Daylight came - followed shortly by the amazingly swift and reassuring appearance of Tony and Jo from Macmillan. Decisions were made with admirable speed. I’d been really sick. So I probably hadn’t absorbed much medication. So I needed it injected. Calls were made, drugs and syringes, procured, injections given. I promise never to forget how lucky I am to have this level of specialist support available at such speed.
The Wednesday crash meant I missed the second part of my survey on spirituality (chapter 19). A shame – because my mention of it attracted the attention of David Webb, the fearless defender who played a central role in what was probably QPR’s best ever team. David (I certainly won’t call him Webb-y) heard my radio broadcast, and dropped me a line, thus forging an interesting and unexpected link between spirituality, finality and football. And it struck me that it was a bit like the 1966 World Cup final in reverse. Some people think the Grim Reaper is on the Pitch… they think it’s all over… well it isn’t just yet.
Friday, 10 October 2008
24. Wedding anniversary
Today is our 28th wedding anniversary. Mary gently woke me with a cup of tea and a greetings card. The words are by Edward Monkton. The photo was taken in Sheffield in 1968.
Tuesday, 7 October 2008
23. A financial coup
I’ve never been very interested in finance. Well, in all honesty, I’ve never needed to be. I always earned a decent salary, was never unemployed, and my tastes and expectations never exceeded my means. I always felt we had just about enough of everything – food, housing, transport etc – but rather too many cushions and soft furnishings, which was not of course my fault.
Working in offices was a help, giving me unlimited access to the great twin joys of office life – post-it notes and fine-line pens. In latter years, they even gave me free cd-roms and memory sticks. There are few pleasures to equal a newly stocked stationery cupboard.
So, I’m quite surprised to find that in my final days I’ve pulled off something of a financial coup. I’m richer than Lehman Brothers. I have more money than the Royal Bank of Scotland. Just at the point when the world’s great financial wheeler-dealers have gone into meltdown (we knew they would), I have beaten the system by gracefully liquidating all my assets to avoid probate problems. I remember somewhere back in the days of junk bonds, some hot-shot New York banker boasting that “when the world ends, the one with the most money wins.” He never guessed it would be me.
Better still, I have already passed my good fortune to my kids. In a single master stroke, born from years of not giving a toss about the FTSE Index, I recently introduced them to the single instrument of savings I fully understood - the enduring world of Premium Bonds. It is all they need to know. As a result, not a single month has gone by without them winning at least £50 from the indefatigable ERNIE, and with the promise of untold riches to come forever into the future. Brilliant. In the end, their fiscally-challenged father is shown to have true financial acumen. And without ever having to lie or cheat or steal his way to get it.
Ok – I know what you’re thinking – it’s the drugs talking. There’s more to international high finance than he can get his head around. Fill anyone with enough morphine and steroids and they think they're masters of the universe. Not so. For the first time in weeks, I seem to have the drugs under some kind of control and I haven’t had a hallucination all day. On the other hand, I have just been watching Newsnight – so maybe all bets are off.
It’s Monday night and I’ve been home from the hospice for a few days now. Getting some predictability into the drugs regime was a real help over the weekend. I am hoping for some stability. Without it, I tend to use a walking stick in case of dizziness and my voice can waver and disappear without much warning. On Sunday afternoon, I sat down with my mother and said she could ask me any questions she liked about my illness and I would answer completely truthfully. We sat together quietly, occasionally holding hands.
Working in offices was a help, giving me unlimited access to the great twin joys of office life – post-it notes and fine-line pens. In latter years, they even gave me free cd-roms and memory sticks. There are few pleasures to equal a newly stocked stationery cupboard.
So, I’m quite surprised to find that in my final days I’ve pulled off something of a financial coup. I’m richer than Lehman Brothers. I have more money than the Royal Bank of Scotland. Just at the point when the world’s great financial wheeler-dealers have gone into meltdown (we knew they would), I have beaten the system by gracefully liquidating all my assets to avoid probate problems. I remember somewhere back in the days of junk bonds, some hot-shot New York banker boasting that “when the world ends, the one with the most money wins.” He never guessed it would be me.
Better still, I have already passed my good fortune to my kids. In a single master stroke, born from years of not giving a toss about the FTSE Index, I recently introduced them to the single instrument of savings I fully understood - the enduring world of Premium Bonds. It is all they need to know. As a result, not a single month has gone by without them winning at least £50 from the indefatigable ERNIE, and with the promise of untold riches to come forever into the future. Brilliant. In the end, their fiscally-challenged father is shown to have true financial acumen. And without ever having to lie or cheat or steal his way to get it.
Ok – I know what you’re thinking – it’s the drugs talking. There’s more to international high finance than he can get his head around. Fill anyone with enough morphine and steroids and they think they're masters of the universe. Not so. For the first time in weeks, I seem to have the drugs under some kind of control and I haven’t had a hallucination all day. On the other hand, I have just been watching Newsnight – so maybe all bets are off.
It’s Monday night and I’ve been home from the hospice for a few days now. Getting some predictability into the drugs regime was a real help over the weekend. I am hoping for some stability. Without it, I tend to use a walking stick in case of dizziness and my voice can waver and disappear without much warning. On Sunday afternoon, I sat down with my mother and said she could ask me any questions she liked about my illness and I would answer completely truthfully. We sat together quietly, occasionally holding hands.
Thursday, 2 October 2008
22. Steroid Rush
Hang on. I recognise this. It’s a steroid rush. I’ve had it before. Like jump starting a car. 8mg of dexamethasone is washing through my bloodstream and I’m looking up. It’s all quite clear right now.
There was the radio interview - and for a moment, it was just like being back at work. The broadcast media – my home territory – breathing extra life at the end of life.
Phones ringing. Mobile humming. Emails clicking up in bold in all three inboxes; old names, new names, weird names, shopping vouchers, subscription pleas, offers of viagra (yeah, right). Click, Click. Click.
It all goes a bit Alice in Wonderland. One pill makes you larger. One pill makes you small.
We were in a taxi going from the BBC to the hospice. But then my sister rang and we detoured to her house and – by amazing serendipity – spent Jewish New Year with her and Victor for the first time in years. I think we had smoked salmon on lightly toasted cholla. Tasted good.
I nodded off on their sofa for a moment. There was a dream sequence. Lynn FW came by and I showed her the Facebook site “It’s a Potential Death Trap!” Yes, it really exists. In those days, we saved a mullion wee babies from exploding toasters. We chased mildly dangerous people, armed only with a four-man film crew.
Lyndsay came in from the corridor complaining that she hadn’t been mentioned in the blog. She was left in the corridor too long – I admit that now. We worked on bids and tenders together, but her first victory was without me.
Ann and Viv were somehow trying to make arrangements and there were a whole load of other people with diary problems almost as bad as Peter’s. No, that can’t be right.
Mary’s sister Ann was here – and she bought me some Slippery Elm Food (unmalted). And chocolates. And got rid of the credit crunch (probably not). I’m glad she came.
Martha bought two toys for Rosey Rose the Crazee Cartoon Cat, who then launched a relentless assault on Katy’s old pet monkey. The monkey hasn’t got a hope.
And somewhere, behind and beyond all this haze, Mary has been dealing with builders and decorators and shopping and domesticity and hospice visits and the whole relentless up and down of it all – and she is truly truly amazing. No need for the spellcheck. That’s truly twice, as it should be.
And the most important thing to realise, the most important thing of all, is that I know she will get through it.
And Dan and Katy will get through it too.
And it may just be a steroid rush – but I can see clearly right this minute – and I know they have the strength.
There was the radio interview - and for a moment, it was just like being back at work. The broadcast media – my home territory – breathing extra life at the end of life.
Phones ringing. Mobile humming. Emails clicking up in bold in all three inboxes; old names, new names, weird names, shopping vouchers, subscription pleas, offers of viagra (yeah, right). Click, Click. Click.
It all goes a bit Alice in Wonderland. One pill makes you larger. One pill makes you small.
We were in a taxi going from the BBC to the hospice. But then my sister rang and we detoured to her house and – by amazing serendipity – spent Jewish New Year with her and Victor for the first time in years. I think we had smoked salmon on lightly toasted cholla. Tasted good.
I nodded off on their sofa for a moment. There was a dream sequence. Lynn FW came by and I showed her the Facebook site “It’s a Potential Death Trap!” Yes, it really exists. In those days, we saved a mullion wee babies from exploding toasters. We chased mildly dangerous people, armed only with a four-man film crew.
Lyndsay came in from the corridor complaining that she hadn’t been mentioned in the blog. She was left in the corridor too long – I admit that now. We worked on bids and tenders together, but her first victory was without me.
Ann and Viv were somehow trying to make arrangements and there were a whole load of other people with diary problems almost as bad as Peter’s. No, that can’t be right.
Mary’s sister Ann was here – and she bought me some Slippery Elm Food (unmalted). And chocolates. And got rid of the credit crunch (probably not). I’m glad she came.
Martha bought two toys for Rosey Rose the Crazee Cartoon Cat, who then launched a relentless assault on Katy’s old pet monkey. The monkey hasn’t got a hope.
And somewhere, behind and beyond all this haze, Mary has been dealing with builders and decorators and shopping and domesticity and hospice visits and the whole relentless up and down of it all – and she is truly truly amazing. No need for the spellcheck. That’s truly twice, as it should be.
And the most important thing to realise, the most important thing of all, is that I know she will get through it.
And Dan and Katy will get through it too.
And it may just be a steroid rush – but I can see clearly right this minute – and I know they have the strength.
Tuesday, 30 September 2008
21. Radio Times
Not quite to plan. Hoping to avoid a bog-standard cancer victim interview on Radio 2, I fear I ended up producing exactly that. What about the gags, Steve? The cute witticisms? The slightly off-colour asides? Can we get a little mustard on that ham?
Ok, don’t go crazy, I'm not beating myself up about this, but somehow I felt I couldn’t cut through the familiarity of a radio interview. Too comfortable. Not enough pressure. Everyone was so nice. My edge blunted by cosiness and a bloodstream full of morphine. I didn’t really hit the spot.
Did I even deliver a clear set of headlines?
I’m dying of cancer, but I’m still the same bloke. I choose to deal with this head on. It wouldn't suit everybody.
It’s not about me. It’s about Mary and Dan and Katy and all the things they have to deal with in all their relationships every minute of everyday. How they learn and grow and gather strength. Tough for me? I don’t think so. Look around and see who else is involved.
And what about the wider and widening circles of friends and family and how their lives are moved? Don’t just look in the obvious places. Emotional release comes easy for some people – but the more restrained have feelings too. I can see that now. The most surprising people are affected.
OK, it’s getting late, the pain is coming back, and the broadcast has attracted hundreds of emails I’d like to read. So I’m rushing to prĂ©cis here. I want to be clear – at the risk of being trite.
It’s the little things that count. I’m staying close to home.
Normality can become profundity.
People are much kinder than you ever imagined.
I’m still not angry. What was done cannot be undone. What was missed can stay uncovered.
As the pain worsens, one day at a time can become one hour at a time or even one moment. But let me tell you, even that moment can be enjoyed, if you can get your head up to experience it.
I’ve learned a lot in these past few weeks – and still I’m not afraid.
OK – enough of the potted philosophy. It was a good day. I enjoyed my few minutes on the radio – complete with the statutory BBC taxi that didn’t know where it was going – and I’ve got a load of new stuff to read. But, pain permitting, I want to get home now. Apart from everything else, I’m missing out on the continuing adventures of Rosey Rose The Crazee Cartoon Cat. And that's not to be missed.
Ok, don’t go crazy, I'm not beating myself up about this, but somehow I felt I couldn’t cut through the familiarity of a radio interview. Too comfortable. Not enough pressure. Everyone was so nice. My edge blunted by cosiness and a bloodstream full of morphine. I didn’t really hit the spot.
Did I even deliver a clear set of headlines?
I’m dying of cancer, but I’m still the same bloke. I choose to deal with this head on. It wouldn't suit everybody.
It’s not about me. It’s about Mary and Dan and Katy and all the things they have to deal with in all their relationships every minute of everyday. How they learn and grow and gather strength. Tough for me? I don’t think so. Look around and see who else is involved.
And what about the wider and widening circles of friends and family and how their lives are moved? Don’t just look in the obvious places. Emotional release comes easy for some people – but the more restrained have feelings too. I can see that now. The most surprising people are affected.
OK, it’s getting late, the pain is coming back, and the broadcast has attracted hundreds of emails I’d like to read. So I’m rushing to prĂ©cis here. I want to be clear – at the risk of being trite.
It’s the little things that count. I’m staying close to home.
Normality can become profundity.
People are much kinder than you ever imagined.
I’m still not angry. What was done cannot be undone. What was missed can stay uncovered.
As the pain worsens, one day at a time can become one hour at a time or even one moment. But let me tell you, even that moment can be enjoyed, if you can get your head up to experience it.
I’ve learned a lot in these past few weeks – and still I’m not afraid.
OK – enough of the potted philosophy. It was a good day. I enjoyed my few minutes on the radio – complete with the statutory BBC taxi that didn’t know where it was going – and I’ve got a load of new stuff to read. But, pain permitting, I want to get home now. Apart from everything else, I’m missing out on the continuing adventures of Rosey Rose The Crazee Cartoon Cat. And that's not to be missed.
Thursday, 25 September 2008
20. The wrong time of day
It all depends on what time of day you call. This morning wouldn’t have been good. In fact, this morning I thought it was all over. Clammy and exhausted, I might even have said so.
With the Fentanyl pain patch boosted from 12 mcg to 100, and the morphine top-up raised from 10 to 25 - plus the inclusion of a bunch of steroids, anti-emetics and the odd tranquilliser - I hoped I'd be feeling the benefit. But it was getting away from me. I thought a new strategy was necessary and Mary called a summit for tomorrow.
But then – in the space of an hour - it all changed. And I had to hit the phones, trying desperately to remember who I’d spoken to in the last couple of days, and saying, no hang on, it’s not that bad, it’s not over yet. Rumours of my death etc… Must go now, I have to interrupt a few grieving processes.
What changed everything was when Doctor Jane arrived to calm me down. We’re not finished yet, she said. There are more weapons in the armoury. More steroids for a start – so they got doubled straight away. Some steroids can be useful in reducing liver inflammation and they also can help to revive your appetite. Within a couple of hours I was microwaving some miso soup Vicky bought me from the local deli. (It’s what ordinary shops sell round here. When they run out of mung beans).
And more to the point – and yet almost as an afterthought – my blood tests had come back from the lab and they were OK. Ah Doctor Jane what a pleasure to see you. Bringing real evidence that if indeed my days are numbered, then they are at least in more than single figures. I hereby grant you a full consultancy, with lifetime tenure.
And so the day is completely rewritten. Heaven knows, this is exhausting. And I’m the least of it. Imagine what it’s like for Mary and Dan and Katy.
It’s Thursday evening now and the morphine-laced fog of the past couple of days appears to be clearing. Now I’ve calmed down a bit, I’m recalling a couple of possible hallucinations. I had a call from the producer of the Jeremy Vine programme on Radio 2, which has apparently taken an interest in this blog. A strange way to boost programme ratings, but OK with me. And I somehow believe QPR won 1-0 at Aston Villa, and not even in HD. Can they possibly be winning in standard definition as well?
Oh, and Paul G wrote after my last blog and said he’s glad he’s not God because he would be fed up with me. But if he was God, he would forgive me.
With the Fentanyl pain patch boosted from 12 mcg to 100, and the morphine top-up raised from 10 to 25 - plus the inclusion of a bunch of steroids, anti-emetics and the odd tranquilliser - I hoped I'd be feeling the benefit. But it was getting away from me. I thought a new strategy was necessary and Mary called a summit for tomorrow.
But then – in the space of an hour - it all changed. And I had to hit the phones, trying desperately to remember who I’d spoken to in the last couple of days, and saying, no hang on, it’s not that bad, it’s not over yet. Rumours of my death etc… Must go now, I have to interrupt a few grieving processes.
What changed everything was when Doctor Jane arrived to calm me down. We’re not finished yet, she said. There are more weapons in the armoury. More steroids for a start – so they got doubled straight away. Some steroids can be useful in reducing liver inflammation and they also can help to revive your appetite. Within a couple of hours I was microwaving some miso soup Vicky bought me from the local deli. (It’s what ordinary shops sell round here. When they run out of mung beans).
And more to the point – and yet almost as an afterthought – my blood tests had come back from the lab and they were OK. Ah Doctor Jane what a pleasure to see you. Bringing real evidence that if indeed my days are numbered, then they are at least in more than single figures. I hereby grant you a full consultancy, with lifetime tenure.
And so the day is completely rewritten. Heaven knows, this is exhausting. And I’m the least of it. Imagine what it’s like for Mary and Dan and Katy.
It’s Thursday evening now and the morphine-laced fog of the past couple of days appears to be clearing. Now I’ve calmed down a bit, I’m recalling a couple of possible hallucinations. I had a call from the producer of the Jeremy Vine programme on Radio 2, which has apparently taken an interest in this blog. A strange way to boost programme ratings, but OK with me. And I somehow believe QPR won 1-0 at Aston Villa, and not even in HD. Can they possibly be winning in standard definition as well?
Oh, and Paul G wrote after my last blog and said he’s glad he’s not God because he would be fed up with me. But if he was God, he would forgive me.
Sunday, 21 September 2008
19. Spirituality and technology
I’ve always been keen on new technology. I have frequently told my less advanced friends (well, just Bob D actually) that this blog is much better in broadband. It’s faster, more colourful and better written.
And a few days ago I saw QPR on High Definition TV. Rather than go to Loftus Road, I went round to Dan’s flat to watch them on his HD plasma. They won 4-1 and that never happens in real life. (Also, there was no queue for the toilet, and no idiot bellowing obscenities in my left ear).
In one of my previous jobs I played a minor role in introducing new technology to the BBC. With hindsight, both my life - and the lives of my colleagues - would have been considerably improved if my role had been even more minor. Nevertheless, I did what I did, and current occupants of the 24-hour news hamster wheel will have to get their fun where they can. I was planning to discuss this with Mark and Richard S when we had lunch on Wednesday – but we found more important things to say. Credit to both of them, they never once answered their Blackberries, despite their exalted status in the Corporation.
The slowness of technology is one of the drawbacks to life at the hospice, although (I think) I am managing to get most of my emails – which I greatly enjoy. My favourite this week was from a man called Stuart who’d come across my blog while pursuing a Google alert he’d put out on the Chelsea Building Society (mentioned briefly in chapter 5). It must be the first time the Chelsea has been useful for anything.
I have not, however, received a reply – electronic or otherwise – from Prof Cunningham (chapter 2). Well, he’s a busy bloke, but an acknowledgement from his secretary might have been nice.
I came home for the weekend carrying a Tesco’s carrier bag full of drugs. In case you’re passing – and you’re short of the odd painkiller – I’ve got a dozen different kinds, from paracetemol through to morphine, with steroids in between. Plus of course the drugs you take to counteract the side effects of the other drugs. Valda and John came to lunch on Friday – but they stuck to the lamb. Mary cooks it Nigella-style and the only side effect is a craving for more. Rosey the Cat was crazy for it. She turned into an instant cartoon character on first taste, throwing her head around and swivelling her eyes with astonishment, as in, wow, what the hell was that?
It’s back to the hospice on Monday for more drugs trials. Although it looks like a hospital, it doesn’t feel like it at all. There are none of those irritating hospital routines, where people are in and out of your room all the time, asking you questions you’ve already been asked by someone else. Instead, you get a steady supply of Complan, an occasional volunteer to get your shopping, and even – from time to time – a drinks trolley, yes a drinks trolley with real alcohol, like they used to have at the BBC. Well, if you’ve got to go, you might as well go happy.
But most of all, it has the reassurance of a nice kind Irish nurse when you spring up in the middle of the night, brain addled by pain and morphine, convinced you’re losing the plot and you need a great big injection of sedative. You’ll be needing a cup of hot sweet tea, she says, and brings it.
I’m not sure how long I’m staying in the hospice, but in the meantime, I’m one of 392 people taking part in a “study to explore the associations between beliefs and psychological status in patients with life threatening illnesses.” In other words, will I find God before I die? Especially if they give me really strong drugs? I only hope I live long enough to find out. (As I’d really like to know).
In all honesty, I’m not sure that the evidence of me and the other 391 (for statistical purposes) will be of much help, as the survey seems to confuse spirituality with religious belief. But as it sets out to tackle questions that have baffled the world’s greatest thinkers since time began, and as I may not get to complete the final questionnaire, I’d like to give my answers now:
1. No God or gods
2. No religion, thanks very much
3. Mankind is essentially good
4. I’ve had my fair share
5. Imagine all the people… living life in peace…..
If any of this changes in the next few weeks, blame the drugs.
And a few days ago I saw QPR on High Definition TV. Rather than go to Loftus Road, I went round to Dan’s flat to watch them on his HD plasma. They won 4-1 and that never happens in real life. (Also, there was no queue for the toilet, and no idiot bellowing obscenities in my left ear).
In one of my previous jobs I played a minor role in introducing new technology to the BBC. With hindsight, both my life - and the lives of my colleagues - would have been considerably improved if my role had been even more minor. Nevertheless, I did what I did, and current occupants of the 24-hour news hamster wheel will have to get their fun where they can. I was planning to discuss this with Mark and Richard S when we had lunch on Wednesday – but we found more important things to say. Credit to both of them, they never once answered their Blackberries, despite their exalted status in the Corporation.
The slowness of technology is one of the drawbacks to life at the hospice, although (I think) I am managing to get most of my emails – which I greatly enjoy. My favourite this week was from a man called Stuart who’d come across my blog while pursuing a Google alert he’d put out on the Chelsea Building Society (mentioned briefly in chapter 5). It must be the first time the Chelsea has been useful for anything.
I have not, however, received a reply – electronic or otherwise – from Prof Cunningham (chapter 2). Well, he’s a busy bloke, but an acknowledgement from his secretary might have been nice.
I came home for the weekend carrying a Tesco’s carrier bag full of drugs. In case you’re passing – and you’re short of the odd painkiller – I’ve got a dozen different kinds, from paracetemol through to morphine, with steroids in between. Plus of course the drugs you take to counteract the side effects of the other drugs. Valda and John came to lunch on Friday – but they stuck to the lamb. Mary cooks it Nigella-style and the only side effect is a craving for more. Rosey the Cat was crazy for it. She turned into an instant cartoon character on first taste, throwing her head around and swivelling her eyes with astonishment, as in, wow, what the hell was that?
It’s back to the hospice on Monday for more drugs trials. Although it looks like a hospital, it doesn’t feel like it at all. There are none of those irritating hospital routines, where people are in and out of your room all the time, asking you questions you’ve already been asked by someone else. Instead, you get a steady supply of Complan, an occasional volunteer to get your shopping, and even – from time to time – a drinks trolley, yes a drinks trolley with real alcohol, like they used to have at the BBC. Well, if you’ve got to go, you might as well go happy.
But most of all, it has the reassurance of a nice kind Irish nurse when you spring up in the middle of the night, brain addled by pain and morphine, convinced you’re losing the plot and you need a great big injection of sedative. You’ll be needing a cup of hot sweet tea, she says, and brings it.
I’m not sure how long I’m staying in the hospice, but in the meantime, I’m one of 392 people taking part in a “study to explore the associations between beliefs and psychological status in patients with life threatening illnesses.” In other words, will I find God before I die? Especially if they give me really strong drugs? I only hope I live long enough to find out. (As I’d really like to know).
In all honesty, I’m not sure that the evidence of me and the other 391 (for statistical purposes) will be of much help, as the survey seems to confuse spirituality with religious belief. But as it sets out to tackle questions that have baffled the world’s greatest thinkers since time began, and as I may not get to complete the final questionnaire, I’d like to give my answers now:
1. No God or gods
2. No religion, thanks very much
3. Mankind is essentially good
4. I’ve had my fair share
5. Imagine all the people… living life in peace…..
If any of this changes in the next few weeks, blame the drugs.
Monday, 15 September 2008
18. Hospice days
I’m in the Marie Curie Hospice in Hampstead. In one of the new rooms. Tastefully decorated in my favourite shade of beige, and complete with excellent room service and hot and cold running drugs of your choice. As a connoisseur of fine hospital rooms, let me tell you this competes with the best of them. And there’s no charge for it. The hospice and all its support activities are a third funded by the NHS, the rest by voluntary donations. Amazing.
Admittedly, the food isn’t all that great but, hey, there’s a microwave oven down the corridor and my diet nowadays consists increasingly of powdered food supplements. These do not require great culinary skills. Just add water or milk for a refreshing drink in any of three flavours: strawberry, banana and wall paper paste. Personally, I prefer the strawberry in the mornings, while the evenings go better with glue.
Oh – and I do have a gripe about the television, an airline type monitor which is difficult to operate before you get your engineering degree. It takes four separate operations just to turn it on, then another eight before you can switch from television to radio. The decision to install it for doped up cancer patients was genuinely brave.
I am here to try to sort out my pain relief. I need to work out a drugs regime that won’t render me unconscious for most to the day. Morphine is very effective in stopping your suffering but it’s also effective in stopping everything else. So I need to establish a balance between taking drugs, eating, sleeping, and going to parties – and you all know how tricky that can be. Also, I had better throw in the necessity to keep up this blog, as my silence on this site has led to (tiny) howls of protest from around the globe.
So, over the next few days I will try to update you all. But first I’ll finish the bit I was writing about the new cat. Ah yes, the cat.
The top part of her face is deepest black, the bottom half brilliant white. Like two halves of a cat stuck together. It makes her difficult to photograph – plays havoc with the autofocus.
We didn’t get her from Cat Woman - as we feared that Cat Woman might move in too. Alison down the road kindly promised to feed both of them if necessary – but we thought that would be pushing it. So we went to the RSPCA where we found eight cats with social issues hanging from the tattered curtains of a front room in Stanmore. Rosey seemed slightly less flakey than the others.
We decided on the name Rosey because post-ironic names for pets simply don’t work. My nephew, James, called his cat Morrissey, which seemed cute until he had to go round the neighbourhood calling out the name, and heaven knows he’s miserable now.
In her own mildly demented way, Rosey can hardly believe her luck. Her improved postal code has propelled her into middle class luxury, complete with daily choice of cat food (wet or dry madam?) and a beautiful fleece-lined bed, which she doesn’t use because it’s cosier to sleep behind the washing machine. She spends most of her day skidding across the floor assaulting imaginary objects. Her speciality is the surprise attack on slow-moving shoes.
I’d like to get home before she turns into a fully-fledged terrorist but I’m not sure how long I’ll stay here. It feels very comfortable and safe, but communications are a problem. The mobile phone signal is very variable and internet access is by mobile dial-up which is v..e..r..y slow. It’ll take ages just to upload this.
Admittedly, the food isn’t all that great but, hey, there’s a microwave oven down the corridor and my diet nowadays consists increasingly of powdered food supplements. These do not require great culinary skills. Just add water or milk for a refreshing drink in any of three flavours: strawberry, banana and wall paper paste. Personally, I prefer the strawberry in the mornings, while the evenings go better with glue.
Oh – and I do have a gripe about the television, an airline type monitor which is difficult to operate before you get your engineering degree. It takes four separate operations just to turn it on, then another eight before you can switch from television to radio. The decision to install it for doped up cancer patients was genuinely brave.
I am here to try to sort out my pain relief. I need to work out a drugs regime that won’t render me unconscious for most to the day. Morphine is very effective in stopping your suffering but it’s also effective in stopping everything else. So I need to establish a balance between taking drugs, eating, sleeping, and going to parties – and you all know how tricky that can be. Also, I had better throw in the necessity to keep up this blog, as my silence on this site has led to (tiny) howls of protest from around the globe.
So, over the next few days I will try to update you all. But first I’ll finish the bit I was writing about the new cat. Ah yes, the cat.
The top part of her face is deepest black, the bottom half brilliant white. Like two halves of a cat stuck together. It makes her difficult to photograph – plays havoc with the autofocus.
We didn’t get her from Cat Woman - as we feared that Cat Woman might move in too. Alison down the road kindly promised to feed both of them if necessary – but we thought that would be pushing it. So we went to the RSPCA where we found eight cats with social issues hanging from the tattered curtains of a front room in Stanmore. Rosey seemed slightly less flakey than the others.
We decided on the name Rosey because post-ironic names for pets simply don’t work. My nephew, James, called his cat Morrissey, which seemed cute until he had to go round the neighbourhood calling out the name, and heaven knows he’s miserable now.
In her own mildly demented way, Rosey can hardly believe her luck. Her improved postal code has propelled her into middle class luxury, complete with daily choice of cat food (wet or dry madam?) and a beautiful fleece-lined bed, which she doesn’t use because it’s cosier to sleep behind the washing machine. She spends most of her day skidding across the floor assaulting imaginary objects. Her speciality is the surprise attack on slow-moving shoes.
I’d like to get home before she turns into a fully-fledged terrorist but I’m not sure how long I’ll stay here. It feels very comfortable and safe, but communications are a problem. The mobile phone signal is very variable and internet access is by mobile dial-up which is v..e..r..y slow. It’ll take ages just to upload this.
Friday, 12 September 2008
17. Slight change of plan
Today's blog was going to be about our new rescue cat. She's called Rosey and probably has some social issues as she was born in Tottenham. But the RSPCA, delighted by the upgrade of her postal code to Muswell Hill, are sure we'll get along just fine.
Unfortunately there'll have to be more about Rosey next time - as somewhat out of the blue, it was decided about ten minutes ago that I should go into the hospice at Hampstead for symptom control. I've been having a few new problems and Tony, the Macmillan nurse, thought I'd be better off being looked at by doctors.
So, don't panic. It's not what you think. It's just an opportunity for the hospice to evaluate me. I'll probably stay there for a few days. And will return to the blog at the earliest technological moment.
Saturday, 6 September 2008
16. Bad days and good lunches
The problem with having a few bad days is that you start to worry they won’t be followed by a few good ones. One bad day, OK. Two, never mind. But three - and you start to wonder. It’s time to start reciting the mantra - one day at a time. Fortunately, everyone agrees cancer does not proceed in a straight line. It’s as unpredictable as the rest of me. The end is not in sight. One day at a time.
The pain kicked in just before last weekend. I’m not particularly scared of pain but it does sort of take the fun out of things. I started to cancel social engagements – a pain in itself. And I saw the pain in Mary’s eyes as she saw the pain in mine. And that really hurt.
But I’m well supported here – by the hospice and the Macmillan nurses and the GP - and by Monday afternoon I’d got a new drug. It’s called oramorph and cancer fans will know it’s on the top rung of the painkilling ladder. Forget your codeines and paracetemols. This is hardcore. It’s so cool you don’t pour it on to a spoon. You suction it with a syringe then squirt the stuff straight down your throat. Fifteen minutes later you go all woosy.
And that’s the trouble with strong painkillers. They’re great at controlling pain – if you don’t mind being rendered unconscious. But, hey, I’m a social butterfly. I need to be out there. Nothing amusing happens to you when you’re spark out for the day. So on Wednesday, I relaxed the oramorph and went lunching in the West End. Best decision ever.
So... I am in a Turkish restaurant just up the road from Broadcasting House, nibbling some bread and hummus, and chatting to Tim and Fiona and Chrissie, and waiting for Rachel and Kav to arrive. (None of the names in this story will be changed to protect the innocent, as frankly they can look after themselves). As we’re sitting there, I spot the frantic figure of Mark, in his usual desperate hurry, about to leave the restaurant. Then he sees me. Unexpectedly. Out of context. And clearly not dead. What to do? He’s madly busy and he can’t stop. On the other hand, if it really is me, and apparently still breathing, then he can’t NOT stop.
So he stands frozen, ashen-faced, eyes like saucers. “Take it easy Mark, you look like you’ve seen a ghost,” said Tim. “Not yet,” added Chrissie, helpfully.
Lunch was great but because much less alcohol is taken nowadays, it only lasted about three hours. In earlier days, it was a minimum of six. And in the very early days (see picture), it lasted until the following Sunday. It was illegal to leave any earlier.
I caught a taxi home and got one of those miserable cabbies who complain that Muswell Hill is the end of the known world. You’ll have to give me directions, said the driver, clearly fed up about leaving central London. Really, I said, didn’t you do the Knowledge? Yeah, he said, but that was 20 years ago. You can relax mate, I said, Muswell Hill hasn’t moved since then.
The following day I was back in the West End for Viv’s leaving party. I like the familiarity of a BBC gathering. It’s nearly ten years since I left the BBC, but the corporation is like an old overcoat you can pick up and wear at any time and always feel very comfortable. That’s why people keep going back to work there – myself included.
Leaving parties are important. It matters how you leave a place – or a job, or a relationship or even the Planet Earth itself. If you leave on good terms, you’ll always have a residual affection for it. So always make your peace. At my own BBC leaving party, I tried to express this with for a suitable quotation. I was hoping for a bit of Aristotle or Shakespeare or Bernard Shaw, but eventually settled for something by Gary Barlow, the blond one from Take That. “Whatever I said, whatever I did, I didn’t mean it.”
I was planning to ask some of the people at Viv’s party to my funeral – but it’s a real snag trying to set a date. Safe to say, if they’re reading this, they’re invited.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Wednesday, 30 July 2008
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.
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.
Thursday, 24 July 2008
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.
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.
Sunday, 20 July 2008
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.”
“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.
Thursday, 17 July 2008
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?
Monday, 14 July 2008
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,
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
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