Wednesday, 22 August 2012

Who's gonna drive you home?

Yesterday I popped into the Beatson for a wee bleed and to pick up this month’s bumper bag of harsh chemicals. My last. That’ll be six monthly poisonings under my belt come Sunday, with no more due.

I should have got this round of chemo last week, but my white cells were low and my consultant regarded it as “a bit gung-ho” to dole out drugs which batter the immune system while it was already punch-drunk. So the regular envenoming was deferred for a week, my counts returned to normal, and this morning I took the first of my final five doses.

Feeling fine so far.

I’d like to think it’s my last round. It’s the last I’m scheduled for, and the last I’ll get as long as things remain as they are. If one of my three-monthly scans shows anything tumourly trying to sneak back, I’ll be back on the Temozolomide sharpish, but I’m not planning on that happening. I’ve told it not to.

I had hoped that the end of the chemo would mean an end to the off-and-on tiredness which has plagued me throughout this whole process. I’d reckoned that since it takes a month for me to recover sufficiently between treatments, then a month should be enough to get back to normal.


I’m now told that the fatigue can last up to six months after the chemo stops; it depends on the individual, and there doesn’t seem to be any way of telling how it will hit, other than that younger, fitter patients recover more quickly. That includes me (no, really) so with a bit of luck it will ease off sooner than later. Ideally before I go on holiday.

The other thing I wish would just bugger off and leave me alone is the constant stiffness in my legs and occasionally arms. It’s a bit like the sensation you get the day after a long hill-walk, but all the time (I can’t really compare it to many other kinds of exercise, having spent most of my life avoiding them, but I have been known to enjoy the occasional countryside meander). If I sit still for too long I need to haul myself up with my arms and then waddle rather than spring gazelle-like across the room, as was once my wont. This, I gather, is a side-effect of coming off steroids; they cause some muscle reduction, but also a loosening of ligaments in the back and legs. I’m told pregnant women experience something similar: I’m hoping this is the only symptom we’re going to share; I could do without morning sickness, haemorrhoids or childbirth.

But the really grim symptom of all this is the news that I may not be able to drive again for a very long time. I had previously been told that I would be likely to get my licence back a year after the surgery. That was on December 1, so I was starting to look forward to my licence's return. Counting down, even.

Now I’m told that it could be at least two years, and no-one’s very sure from when. It all depends on when the DVLA (not my doctor, apparently) decides my primary treatment ended, or indeed what my primary treatment was.

If they decide the primary treatment was the surgery (which my research suggests they won't) then it’s another year from December. If they decide it was the radiotherapy and first round of chemo, it’s a further year from mid-February. But if they decide the adjuvant chemo I’m just finishing off is part of the primary treatment, then it’s two years from now. And if I need any further treatment during that period, the clock resets.

This is quite crushing. Quality of life is pretty important just now, and not being able to drive is a massive limitation. Blind 75-year-olds and mental teenagers are allowed licences; what makes me less safe than them?

Well, the huge hole in my brain, apparently. But I have only had the one fit, and that nearly a year ago (it’s how I found out about the cancer in the first place). Since then I’ve had the tumour which caused it cut out, the area around it zapped and poisoned, and I’ve taken anti-epileptics daily. I haven’t so much as twitched in all that time. Surely I’m safe to be behind a wheel?

It seems the DVLA thinks not. They won't even ask my doctors for their opinion, I'm informed; the decision will be made by a government medic who will never meet or examine me, based on some forms which don't contain space for my doctors' input.

I understand the reluctance of officialdom to have people with large chunks of their brains missing hurtling around the countryside in cars. But I'm being checked on very, very regularly. Even now the chemo's over and my monthly trips to the Beatson have come to an end, I will still have three-monthly scans. Surely these could be used as the basis for my continued right to drive, with my licence renewed quarterly every time a scan gets the all-clear? It wouldn't be hard to administer electronically, and it would save a lot of misery for a lot of people in my position.

The next scan is in September. It was scheduled for the 28th, but by the time I got the date I’d booked a holiday, so it was moved forward to the 19th. Which is fine, but it means I won’t get the results until I’m back, so I’ll spend my two weeks in the sun Not Knowing. Looming capitals intended.

Still, it should be fine. June’s cerebral photo-shoot wasn’t substantially different from March’s, and I’ll have just finished my treatment, so there’s no reason to think September’s will show any changes either.

So if it is OK, can I drive at least until the Christmas scan, please? It would at least give me something immediately positive out of the cycle of quarterly anxiety I'm going to have to get used to:  the build-up to each scan, the wait for the results, and the hoped-for relief when they come back clear.

Until they don’t. But that might (just might) never happen, or at least not for years. Until then, I could be driving safely and happily.

Just a thought.

Thursday, 9 August 2012

Stating Points of View...

Dear Auntie Beeb,

Can I call you that? It’s just that I’ve known you since I was a wee boy, ever since Brian Cant was the coolest thing on the telly. It’s like we’re family.

Anyway, you might have heard I’ve not been too well, recently. Just a spot of light brain cancer, nothing to worry about, but it has meant that I’ve been spending quite a lot of time in front of the TV. I get quite tired, you see, and it's as good a place as any to have a slump.

But I can’t say I’ve been very impressed.

I have an established pattern, which is to come home from work knackered, watch the news, have my tea, then fall asleep during the One Show, which you seem to have designed for that purpose. I then won’t surface for an hour or more, until around the time the grown-up telly starts. Unless it’s an Eastenders night, in which case I will wake up to change the channel; these people have voices like Stihl saws and even I can't sleep through that. Our cats are convinced the ’Stenders theme tune goes dum-dum-dum-dumdumdumdum-urgh-bloodyhell-click-zzzzzz.

It’s not the most exotic or productive way to spend an evening, but it suits me. And you’ve spoiled it, Auntie. This summer, there’s been nothing on. Nothing I even want to sleep through.

First there was football, all that Euro 2012 nonsense that Scotland wasn’t even in. You even moved the news for that. You can’t do that: the news is at six o’clock – there’s a law or an old charter or something. Moving it is wrong.

Then there was tennis: Wimbledon, the All-England Lawn Tennis and Croquet Club’s annual knockabout. Tennis is boring and goes on for hours; I hoped for a bit more tension from the croquet finals, but you didn’t even show them.

After that there was golf. Some blokes went for a walk, hitting little white balls in front of them, and eventually one of them was given a claret jug and some money. Whoopie-do, Auntie, whoopie-do.

And through all this, there was the building threat of the Olympics. 

The run-up alone seemed to last most of my adult life.

The torch relay just went on and on and on, and it's not even traditional: the Nazis started it in 1936. And I didn't even bother to watch your rowing drama Bert and Dickie; it looked like a damp Chariots of Fire and I can't help suspecting it was partly responsible for holding up Dr Who this year, which is unforgivable.

I watched the opening ceremony, of course, but I did so on iPlayer, mainly because it has a fast-forward button and I couldn't face three hours of bombastic special effects that night; I went to see The Dark Knight Rises instead. Bits of the Boyle-fest were quite good – it really annoyed Morrissey, for instance – but it did leave me feeling that both Paul McCartney and the monarchy have now had their day.

After that, though… well, the thing is, I don’t like sport, so the Olympics have been a bit of an entertainment dead-zone for me.

Maybe I should explain: I have never liked sport. I know, I know, you don’t understand or don’t believe me. That’s most people’s reaction. Others just look at me like I have just admitted to being a Scientologist or a snail fetishist, or are incapable of processing the information and commence The Football Chat anyway.

I don’t know why I don't like it. I was never good at sport and went to a school at which being bad at games ranked you lower than amoebic dysentery, so that might be part of it. But I suspect it’s because I don't get sport. Don’t understand it. No comprendo.

In my defence, there's quite a lot not to get. Like the scoring in cricket, for instance: I played the game (admittedly under duress) every summer for about six years and I still don't understand that.

Or football. Why is that interesting? The plot's broadly the same every time, it has no soundtrack (well it does, but it seems to consist largely of songs about Irish history and Victoria Beckham's bottom) and there is very little chance of a car chase. Yet I've met people who can barely spell IQ but who can and will talk at massive length about the intricacies of a game in which all I have seen has been some very highly-paid haircuts kicking a ball about for rather longer than seemed necessary.

So the Olympics are just the grand culmination of the general sense of boredom and incomprehension you’ve inflicted on me all summer, Auntie.

Why would I feel involved? Why does every other armchair-bound slob seem to gain some sense of personal achievement from the success of highly-tuned athletes who happen to have been born in the same country as them? What have they done to deserve this vicarious thrill, apart from pulled up the roots their buttocks have sent into their couches and wobbled to the fridge and back? Why are they all so offended when Frankie Boyle Tweets that  Rebecca Adlington has an unfair advantage as a swimmer because she has a dolphin's face? I'm sure Rebecca is a lovely woman and a fine athlete, but she is also a celebrity and uses her media profile to make money; which is fine, but it makes her fair game until she stops taking cash from British Gas. "Eek. Eek, eeek. Eeeeek!", as she said herself, while being awarded her medal and a herring.

Nonetheless, I have watched some of the Games; I haven’t had much choice. But that has just raised more questions.

Why do we now have uneven bars? Is “asymmetric” too difficult a word these days?

Why, Auntie, did you spend so much money moving to Salford, then just weeks later head back to London to broadcast from a glass box balanced on some freight containers? And what’s with the black marble altar surrounded by geometric patterns? Is this so Gary Lineker can boost Team GB’s medal count by raising the aid of a dark, demonic force and interview Bradley Wiggins at the same time?

And what makes Michael Phelps the greatest Olympian of all time? He must be, all your presenters have said so. And yet, while 22 medals is quite a lot, all he does is swim; Daley Thompson had to get blisteringly good at ten sports to get just one of his. And he did it to an Iron Maiden soundtrack. How cool was that?

You don’t need to answer, Auntie. I really just want to know one thing: why is it that, with everyone now receiving digital TV and 24 channels of Olympics available, can’t people like me keep BBC1?

Just in case you change your mind, here’s what I’d like to see on a typical night’s viewing for the rest of the Games:

8.30pm Javelin Catching with George Osborne
Short but sweet. Tune in tomorrow for the Michael Gove episode. And the day after for Culture Secretary Jeremy Hunt. You see where we’re going with this?

8.35pm My Great Big Gypsy Website
Sequel to My Great Big Gypsy Wedding in which the happy couples find their new marital homes on a special mapping app comprising a huge arrow pointing to Jeremy Clarkson’s garden.

9:30pm The Only Way Is Wessex
The casts of various reality shows of the last few years are all put in a house without food, drink or spray tan and not allowed out until they’ve read the complete works of Thomas Hardy.

10:00pm News & Weather
Followed by Reporting Scotland and Newsnight, with proper interviewees who don’t wear Lycra for a living, and no abrupt cut off to the cheap local version until the real one is finished.

11:30pm The Late Movie Double Bill
A couple of old classics back-to-back. Maybe The Maltese Falcon, or Gregory’s Girl, or something from The Godfather trilogy. Not Chariots of Fire.

3:00am All-Star Indian Wrestling
With Dale Winton and Archbishop Philip Tartaglia. This doesn’t actually need to be broadcast, we just need to know it has happened.

It’ll be ratings gold.