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.

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.

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.

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.

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.

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.

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.

In that still and settled place
There’s nobody but you
You’re where I breathe my oxygen
You’re where I see my view
And when the world feels full of noise
My Heart knows what to do
It finds that still and settled place
And Dances there with you

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.

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.