On the Horns of a Dilemma

Just as I had worked out a strategy to postpone the ultimate defeat, the Dealer has shuffled the pack and re-dealt the cards.

My hand is worse than it was, so it’s all back to the drawing board.

The latest MRI scan has revealed that my cancer has become Intermediate on one side of my prostate. It is thinking of moving on and has started to pack its bags. Active surveillance no longer seems to be the treatment option of choice, and I’m now being offered surgery or radiotherapy with hormone treatment.

I can’t pretend I haven’t got it now and I can’t rely on positivity bluster any more. I need to act wisely and decisively. A sort of Napoleonic surgical strike.

As things are at the moment, both treatments will aim for cure, rather than management, and both treatments have the same statistical outcomes, which are good.

If I opt for surgery I can have radiotherapy later if it’s needed, but if I go for radiotherapy I can’t later have surgery. 1-0 to surgery. Surgery would remove it entirely from my body, so that’s 2-0.

Most people seem to have some degree of bladder incontinence after surgery, and some have bowel incontinence. Either of these impact on quality of life, so the score is now 2-1. The consultants are worried about the possible adverse effects a long operation would have on my MS. So radiotherapy has just equalised.

I’m leaning towards radiotherapy preceded by a course of hormone treatment to reduce the swelling of the prostate. This would start as soon as I decide, then a month later I would go to Leeds every day for four weeks for the radiotherapy itself. Some logistical issues here, but I’ll work that out. I should be fit for England selection by Christmas – bluster bluster.

Actually, I’m worried. There – I’ve said it.

 

 

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T2C

It’s interesting to observe that now I’ve received the official technical description of my tumour, I appear to have been reluctant to share it here. So I’m now going to take the plunge and fight the evil monster by exposing it to the oxygen of blog readers

Ten days ago I had my scan to establish the base line by which we can judge the growth or non-growth of the tumour, and thus make rational decisions about treatment options. The result of the scan is that my tumour is T2C. T1 and T2 are tumours that are still in only the prostate gland. T3 is when the cells have decided to go sightseeing to see if I have another desirable property in which they could live and have more babies, like my lymph system or my bones or my liver.

Mine is T2, so it is still happy staying at home. T2 cancers have three stages, A B and C. C is the biggest. The next stage is T3, so my tumour is on the cusp. It is just thinking about looking in the windows of estate agents. I feel a bit unsafe now, and am waiting for appointments in Bradford to see a surgeon and a radiologist, to see what delights they can offer. At the moment, I’ve ruled nothing out and nothing in.

As you can imagine, my two new books are not at the front of my mind. They’re both still going ahead, and I’ll let you know when they’re available in Amazon.

 

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Living Life to the Full

The reactions of friends and acquaintances to the news of my diagnosis have been many and varied, but none of them have been unwelcome, even the ones that completely ignore the information and carry on exactly as before. This reaction might be saying, “I really don’t know what to say and maybe I’m a little embarrassed.” Interestingly, it is not just men who use this approach. And I don’t mind at all, because sometimes I don’t know what to say or feel, either.

Sometimes it is nice for things to be just the way they were.

Others will offer generalised help in the future, and this is reassuring. “If there’s anything I can do, just let me know.” I have heard others being cynical about such offers, but what else can people say, without blunderingly taking over my life?

And then there are those who give advice about how I should spend the days I have left! Eat this food; drink this liquid, take this drug; but most of all, make a bucket list. Live life to the full.

There are things I could put on a bucket list, but I’m not sure what they have to do with living life to the full. People who think living life to the full means doing lots of things are misunderstanding the meaning of living life.

Being in Japan for a bit would be on my list, for example, but spending two days in airports and on a plane to get there and back is not my idea of living life to the full!

No, the mad dash of the list of activities involves lots of discomfort and stress, and while it is happening you will be planning your next thing. Who lives life to the full in an airport lounge?

Living life to the full is something you need to do all the time, not just when you are actually looking at the Taj Mahal. Every second has become precious and unrepeatable. I want to spend as little time as possible in waiting rooms, cars, trains and planes. I want to live fully now and wherever I am.

So the bucket has only one thing in it. Now it is getting to be rather late in the day, learn to love life, with all its beauty, irritations, pain and change. When I look at or hear a tree, experience it as though I will never see one again. See and hear the world as though I will never be here again.

Remember always that you cannot step into the same river twice.

 

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Another List

10 Seminal Books

Here is another, controversial list. This one is a list of ten books that have changed me in some way – change my mind or change the way I see or think about things. They are not my favourite books, or the best written or ones I would take to a desert island, but they probably represent those books that helped to form who I am now.

Your list will be different, but writing it down helps to clarify, to yourself, who you are.

  1. Essays by George Orwell
  2. The Making of the English Landscape by W G Hoskins
  3. The Way of Zen by Alan Watts
  4. The Doors of Perception by Aldous Huxley
  5. Sapiens by Yuval Harari
  6. Feral by George Mombiot
  7. The God Delusion by Richard Dawkins
  8. Walden by Henry Thoreau
  9. I’m OK, You’re OK by Thomas Harris
  10. The Empty Space by Peter Brook

Plus any map by Ordnance Survey.

 

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Wapping Old Steps

Well, I’ve made it. I am now a State Enrolled Old Person. When I was in my twenties I never thought I would get to be this ancient, with a body and mind that are breaking down, and no longer always selflessly acting in my own long-term interests. I am starting to lose track – multiple sclerosis, blindness, and now prostate cancer. Each day is starting to bring its own bitter-sweet sunset.

I am a little scared of the future, which is a new sensation. In the past, a flight of steps meant a journey to a new place at the top; now I know steps go down as well as up. There are steps to the Thames in Wapping, where we were staying at the week-end. The steps go down to the River Thames where convicted pirates were taken to be executed and then left to hang to be washed by three tides. For the felon, these were the final steps.

Wapping Old Steps to the river

 

We all totter down them eventually. Some go proud and defiant; some go with quiet acceptance; some go sobbing and kicking. Maybe, in our search for wisdom, it is possible to make that decision, a conscious decision as to how we will go down the steps to Execution Dock.

Whichever scenario I choose, it will not change the ending, but presumably it will change the way I live between now and the washing of those three tides.

 

 

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The Waiting is Over!

The waiting is over . . . . for now. It is the waiting that is the worst bit. The wait for the appointment, the wait for the test results, the wait for the letter, the wait in the waiting room. If you allow your mind to follow the demented, paranoid monkey that is your own thought process, it can seem like a huge ante-room for Death. It would be easy to see yourself in a Kafka novel, and oh so easy to become a victim.

I now have the result of my biopsy. They took six cores from each side of my prostate, and found cancer cells in four of them – not many, apparently – 2% in some, 6% in others – which suggests a relatively small and well-behaved cancer at the moment.

Strangely, this is the best of bad news. If the biopsy comes back clear it doesn’t mean you don’t have cancer. The biopsy needles are random, so might miss anything sinister.

So at least now I know.

There are three possible treatment options.

The obvious one is surgery. It has the advantage of being total, but causes urinary incontinence and loss of sexual function. This seems a quality v quantity question. And you can’t change your mind.

Next is to treat with radio therapy, which has the side-effect of causing bladder cancer. This is a frying pan and fire question.

The third option, and the one I chose, is active surveillance, which means regular MRI scans and blood tests to keep an eye on any developments before doing anything drastic. I can change my mind at any time, and I have a good support team around me, including the excellent team at home!

I have no other symptoms than poor stream, as they call it, and no pain, so I have opted for quality of life, knowing that one day things might change and I will have to re-think.

Re-thinking and re-adjusting are fine. MS has taught me how to do that. It is still possible I’ll outlive you all, and die with MS and cancer, not of MS or cancer. Just at the moment I’m finding it all very interesting, and it was wonderful to wake up this morning with the relaxed realisation that I didn’t have to go to see a doctor today!

Thanks for all of your best wishes. They seem to have worked!

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Low-Level Anxiety

This time is all about waiting, and I am not as good at it as I thought I would be.

I had my biopsy on my prostate two weeks ago, the consultant team met to discuss my results last Wednesday, and I am going to the hospital for those results on Tuesday. I like to think I am relaxed about all this, and I trot out the cliché that I don’t feel any different. I feel the same as I did last month.

I like to think I am “interested” in the process, in a detached, authorial kind of way, and, certainly, the biopsy itself was an interesting sensation. It was not a sensation I had experienced before, feeling something inside my body cut and scrape at something else that was inside me, but something nameless that, in some way, actually was part of me. It wasn’t painful – just very strange and sharp.

But then the waiting begins.

Is a long wait good or bad news? Have the bits of me shown no sign of cancer cells? Or have they just lost my results?

When you are waiting, all things become possible. Maybe the news is good; maybe the news is bad.

I will find out on Tuesday. Is that a long time, or does it count as a frantic emergency? It’s like those financial statistics on the news – so many millions of this, so many billions of that. Should I interpret the figure as a lot, or as not very much? Is a billion pounds of a particular thing something to worry about or something to celebrate?

Whatever happens on Tuesday, it feels like a junction. Either I will turn one way and celebrate, or I will turn the other way and my life will change.

Wish me luck, and I’ll keep you informed.

 

 

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