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
My father died during the night. Peacefully and painlessly.
We were resolved.
Our last conversation was about this blog, which had made him very happy.
He said that, if he could, he would willingly give me his remaining time.
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.
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