The seven year hitch

I have made a lot of mistakes in my life, although I am hardly alone in that respect, I’m sure. With respect to cancer, I now realise that, given just how extensive and life changing the prostate surgery had been, and the statistical assurance from the surgeon that I was very likely to be clear of it for ten years, I let a dangerous complacency creep in to my attitude – something about which Sue (a far wiser head than mine throughout our marriage) had cautioned me. I told lots of people that the surgery had been a success, implying ‘total and irreversible triumph’. Which it wasn’t – the cancer had returned within a year. More accurately, it had never gone away, and had been lurking quietly, somewhere deep inside me.

A course of treatment was proposed, given that the likely culprit was some cancerous cells left behind in the prostate bed – that is, the spot at the base of the bladder from which my prostate had been removed. The term used for the treatment is salvage radiotherapy, which basically means mopping up stragglers who are left behind and causing trouble. Medical advances have been considerable since 2013 – but back then, the aim of the radiotherapy (which would continue every day for 35 sessions) was to get the cells wherever they were hiding although in truth, it was a little indiscriminate.

A date was set to start. Although I was lucky enough to have private insurance through work, the best place to deliver the therapy was actually the NHS Southampton General.  However, I would be treated as a private patient, which I thought was going to be an interesting experience. I arrived on day one and was shown to the ‘private patient waiting room’, adjacent to the main waiting area, through which I had to walk.

I have to say, they’d done their best. It had a couple of slightly more comfy chairs than outside, a rather sad wilting pot plant and two dog-eared copies of Country Life. It might as well also had a sign on the door which said “Entitled knobbers – this way PLEASE!” as far as I was concerned.

I never set foot in that wretched room again. Outside in the main area there was laughter, kind and bright eyed people, having all manner of friendly chats, all with the shared bond of cancer. I wanted to be with them, often seeing the same ones every day as treatment progressed.

The radiotherapy sessions required great accuracy to ensure that the highest concentration of radiation hits the right target area. To achieve this, three little dots were tattooed on my lower abdomen and either side of my hips. These, incidentally, are my only tattoos, a fact to which only the most unfortunate among you will be able to bear testimony.

These tattooed dots line up with a matrix of lasers to make sure I was always in exactly the same position and posture for every session. Dead clever and so simple.

If only it were that easy.

You see, it’s like this. The radiography team had to make sure my internal organs were in the same configuration every time, as well as my ‘dots’. ‘Why wouldn’t they be, Martin?’ I hear you ask, not unreasonably.

Cue the next mirthsome experience. They do a quick MRI scan to check everything is where it’s supposed to be, before ‘squeezing the trigger’. If they could see that my internal organs were displaced, they had remedies. Oh yes. This, my friends, is the point my dignity packed it’s bags and emigrated.

The radiographer ensured I was all lined up nicely and then headed to the control room. Then the machine began. On completion of a quick whirring scan, silence ensued.  But then a minute later, the distant sound of approaching footsteps.

“We can’t do it yet – you’ve got a gas pocket. Go outside and maybe run a bit…”

A gas pocket, you say? Come again?

What was meant – and this was pointed out by the very patient radiographer on my second day – is ‘your lower bowel has “gas” in it which is distorting your internal architecture, so please go outside and run around in the car park until you have done a suitably substantial fart. We can’t start zapping you until you do, so get cracking’. 

Actually, anyone who runs regularly will tell you that the first kilometre or two of any run is where such phenomena occur. That’s why runners chat so much at the start of a communal run – to mask the inevitable. So it’s a fair request.

However, I learned to dread that sound of approaching footsteps after the initial scan, when lying on the bed of the treatment room, so much so that I’d exclaim loudly “Oh, not AGAIN!” before the radiographer had entered the room, usually laughing. 

Off I’d trot, to try to add to the world’s methane problems.

But the 35 days passed and the side effects were just about manageable. Burned skin (like bad sunburn) and absolute fatigue – my body had been poisoned, so it was going to be a bit tired. I think the lowest point was when I had a morning meeting at the London Transport Museum a week or two after the treatment had concluded, and decided to walk to Covent Garden from Waterloo. I only made it as far as the beginning of Waterloo Bridge before I found myself unable to take another step and had to slump down on the low wall. Odd looks from passers-by to whom I did not know how to say, through tear-filled eyes, “I wonder if you could help me – I don’t think I can stand up…”

But I managed to get to my feet eventually and trudge on to my meeting. Over the following weeks, the symptoms gradually lessened. Most importantly, my PSA had dropped dramatically, and Sue and I began to feel cautiously optimistic.

Seven years of remission ensued, so much so that we moved to six monthly blood tests, with my confidence increasing, year by year, that it might be beaten. Once more, Sue was more cautious and level-headed.

Until 2020, when it started rising again…. Funnily enough, I didn’t feel it was personal (“…why me…??”), though I know some people certainly do, when their cancers doggedly resurface, sometimes after years. We’ll return to that topic.

Fortunately, in the intervening years, there had been advances in radiotherapy. Instead of the more holistic treatment, I was able to have a PET scan (“Sir – do you have any chihuahuas hidden about your person?”) – actually positron emission tomography, which uses radioactive tracers injected into your bloodstream to locate exactly where the cancer cells are, (in this case, identifying a new tumour in my pelvis) enabling a highly accurate, high dose system of radiotherapy to be used. This new system is called SABR or stereotactic ablative radiotherapy – which sends fine high energy beams from multiple angles to all converge on the cancerous cells. Fewer doses are needed, and side effects are lessened. And it seemed to work well – the PSA dropped again.

By now, expectations for both Sue and I were more realistic, and Sue’s experience and caution was proved right. It therefore came as less of a surprise, albeit still distressing, that monthly blood tests showed another rise in late summer 2021 – this time rising fast, confirmed by a follow on test days later. Another PET scan was arranged.

We met Catherine, the oncologist who I had been seeing since 2013, in Southampton to hear the results in September 2021. She explained that the cancer was now present in two locations – in my femoral head and pelvis – as well as my lymph nodes. Radiotherapy was no longer an option – it would actually be harmful to radiate the same area again, although radiotherapy could be used to treat the pain that would inevitably be coming at some future point.

Instead, hormone therapy awaited me. So innocuous-sounding; almost benign.

I have heard other people in my situation use the phrase “the horror of hormone therapy”. That’s probably fair, looked at dispassionately. Hormone therapy is also known as androgen deprivation therapy, and halts production of testosterone, which male cancers such as prostate cancer need to grow. It consists of daily oral chemo drugs (in my case, Abiraterone) combined with a slow release agent called Zoladex, that is injected quarterly into the fat of your stomach (big target area – plenty to aim at), all helped along with daily steroids. The fun never stops, my friends.

The list of side effects does read like a particularly nasty nightmare. Amongst many, many things it does to you, to add to the weakened bladder that I had struggled to control since surgery….

• Instant loss of libido – all desire is gone forever; distressing, disorientating and highly upsetting
• Hot flushes at all hours of the day and night – I have a friend in the prostate cancer community who on a summer night tells of being so hot through his therapy that he went into his garden and lay on the dew covered grass in his boxers for an hour. I however receive no sympathy from menopausal friends, nor should I expect any
• Debilitating fatigue – there is no escape; all treatments do this and hormone therapy is among the worst
• Skin roughening – hands feel like sandpaper
• Nausea – the oncology team can give you anti-nausea tablets but frankly, the side effects of those are worse than the nausea so one just learns to cope
• Weight gain – for some reason, no-one noticed this one in my case. I cannot comprehend why…

So what stops me from slipping into a slough of despond and industrial levels of glumness over this total shitshow? Easy – hormone therapy is the price of survival. I will take it, without question and with unbounded enthusiasm.

Catherine the oncologist had told Sue and I that now, the cancer is advanced and cannot be cured. In prostate cancer terms (graded differently from other forms of cancer), I am T0N1M1… that means no primary tumour (T) (removed in 2012) but tumours in my lymph nodes (N) and distant bone metasteses (M). Equivalent to Stage IVb. Or in other words, it cannot get any worse.

Of all the information we were given about where I now ‘was’, the hardest part to take was being told that the aim of the treatment is palliative. To improve quality of life. I had always thought palliative treatment is what is given to those being cared for in a hospice. Not true, I discovered, but still hit me like a mallet.

At a subsequent meeting, she told me what the likely prognosis was – information that I am not going to share. Not least of all because I fully intend to reach that survival milestone, wave cheerily to it as I march triumphantly past, making appropriately insulting hand gestures and, with luck, go on for many more years.

You see, I don’t want anybody thinking or whispering to friends “He’s supposed to have gone by now isn’t he? Looking a tad peaky, mind.. And I thought people were supposed to LOSE weight when they were pegging out from cancer..? Could have fooled me…”

Most of all, being told that you have an incurable cancer that can now only be managed and contained, and will shorten your life, has the greatest effect, not on your body, but on your mind. Everything changes in your life and in so many ways, for those around you.

That’s what I’d like to talk about next, if you will stay with me.

Thank you for reading.