Changing the conversation about work and cancer

Palliative Perceptions

I’ve been on palliative care for two months now. As I revealed in my last article, I was transferred from hospital to hospice. While death is a long-established taboo subject, I’ve discovered that the words ‘hospice’ and ‘palliative’ create their own frisson as well. Can friends send you a message asking simply how you are? Do they wonder if this implies the question : ‘are you dead yet?’

Well, the answer to that question is that I’m still around. I was told to ‘think months not years’ and I’m determined not to be short-changed. As I’m no longer having scans, I can’t tell how well the tumours inside are developing. The only one I can see, a lump on my right thigh, is not an encouraging indicator. It started the size of a marble, has now progressed through the stages of ping pong ball and tennis ball, and maybe when it reaches football size I won’t have a leg to stand on. I also have a lymphoedema in my right arm that plays a similar game. I wear a compression sleeve on the arm and the hand swells up, and then I wear a compression glove on the hand and the arm swells up, a strange pneumatic drill over which I have little control. I have visions of myself as Michelin man by the end. As the queue of the clinically obese is bound to be the longest it might increase my chances of sneaking through the pearly gates. I shall feel rather deflated if it doesn’t.

Like just about everything else at the moment, palliative care is not what it used to be. Unlike most other things, it has improved. It’s now a personalised service tailored to the needs of the individual. In the case of those much more ill than I am, it can end up with full-time care in a hospice. In my case, so far, it has entailed precisely nothing. I’ve had a meeting with the palliative care consultant and been told, effectively, that I’m now on their list, that they’re there when I need them and to call them when I do. This will include specialist support and equipment.

I’ve made it clear that I want to die at home, so a hospital bed will be required when we reach the end stages. We were asked to go away and think where we’d want to put it. When we told my daughter Marian, a qualified nurse, we’d decided on an upstairs bedroom, her response was : ‘if you think we’re hiding you in an upstairs cupboard you’ve got another think coming. You’ll be down in the living room with the rest of us’. So it all begins to sound very convivial. This is the way the world ends, not with a bang but a party. Palliative care is all about maintaining or improving the quality of life in its final stages and, although I probably shouldn’t, I’ll drink to that.

‘Thinking months’, as the consultant suggested, presents its own interesting challenges. Last week I developed a bad toothache, which reminded me of one of the consolations of death: I won’t have toothache again. I need penicillin to clear out the bacteria, but then I was given two choices for the broken tooth : root canal work or pull the damned thing out. That’s not a difficult decision when your time is limited, and you don’t need to spend any of it having someone digging into your face to save a tooth that like you only has months to live. There’s no point in buying new clothes either, which for me will mean not changing the habits of a lifetime. I’ve never been a model of sartorial elegance, and for years relied on Marks and Spencer to provide me with the same clothes at around seven-year intervals. Then Marks and Spencer went mad, introduced crazy clothes in garish colours, and I migrated to John Lewis. There I found kindred spirits. An old man in a beaten-up Barbour jacket came into the local store soon after my migration and said : ‘I don’t know if you can help me, but I’d like another jacket exactly like this one, only newer’. I was back amongst friends. I’d never heard my philosophy of clothes buying articulated so clearly.

My activities are pretty restricted now as my main symptoms are fatigue and sudden exhaustion after doing something formerly routine like climbing the stairs. I used to be a fanatical exerciser, and still use my exercise bike and the set of pedals that sit by my chair to get a bit of exercise while watching TV. I can now only exercise while sitting down. After my strokes last summer, I get sudden moments of dizziness which, to my chagrin, prevent me from going out on my bike, something I’ve done regularly since I was four years old. Aside from the dizziness, the state of the roads means that death is only a pothole away. I’m happy to think months, but thinking minutes is quite another matter. So bike rides are off the agenda.

Well, that’s the story of my palliative care so far. It provides the prospect of a much better ending than old folks had in the past, where they were often transferred to a care home, drugged until they were almost comatose, and then sat round in a big circle waiting to be shovelled up and removed when the end came. That was the shocking situation when my grandfather ended up in one in the early 1970s. Thank heaven thinking has changed. As for me, I just hope that Michelin man doesn’t explode in the queue before he reaches those pearly gates. I wouldn’t want my cover blown at such a crucial moment.

This weekend, our daughters are taking us for a night away in Southwold. I have a long relationship with the town, dating back to the time when collecting a barrel of Adnams beer was a Christmas tradition. Southwold was a delightful town back then, when you could probably have bought the place for fifty quid. The Sunday magazines and a visit from Gordon Brown and family put an end to that.  Now, most people living there are probably happy to spend fifty quid on a sandwich. Transformed beyond measure, but somehow still the same old Southwold. A walk along the seafront is one of our unmissable experiences, but now we have to wonder if I’d have the strength and breath to walk back. So we’ve hired a wheelchair, which stands proudly in our entrance area. It’s the first stage of things to come, a house full of gadgets to help me deal with the routines of life. Our predecessors in the house had just removed a stair lift when we arrived, but I’m damned if we’re having one of those fitted. If I can’t walk upstairs, I’ll crawl. There are limits!

Harmer Parr, 23/04/24