A Long Hiatus

This post has got long, so let me write the moral up front: if you are a man (defined as having a prostate) then after age 50 make sure you get regular blood tests for PSA (prostate specific antigen) levels. Early detection of prostate cancer can lead to a long and almost unchanged life.

Other comment before going on: Thank you to the NHS, my GP practice, and the folk at St George’s Hospital and Royal Marsden Hospital.

Nearly five years ago, I had a routine medical at my GP surgery. I should have had it four years earlier, and in hindsight things would have been very, very different if I had. Anyway I didn’t, and I did, and the result caused some chaos, not to mention a lot of angst.

The blood test showed that my PSA level indicated a problem. In men it should be in the range [0, 4], mine was 194. So off to St George’s Hospital Tooting to see a consultant. Appointment was about 20 days after the balloon went up with the GP. First visit was to a surgeon, who had a feel at my prostate, and said "rock 'ard, mate", and "no point in surgery". Then a round of biopsy, bone scan, and CT scan, and the medic pointed out "aggressive meta-static prostate cancer", Gleason score of 9 with metastases in the hips and lower spine – not bone cancer but prostate cancer in the bone. He quickly got me a consultant appointment to discuss options.

The consultant explained how I was going in to long-term palliative care (no cure, no remission, the cancer will kill me) and that the median life expectancy for a man in my situation was five years. So onto anti-androgens because that is what they do for all prostate cancer cases – get rid of the testosterone (chemical castration for those who like such terms). Clinical trials of early chemotherapy were happening at the time, but the consultant said "you aren’t going into the experiment as you might not get the treatment, we are going to just give you the treatment." I am not sure it was allowable, but she did it anyway.

So the first four months of 2016 was chemotherapy using docetaxel. Apparently some people carry on working during chemotherapy, I have no idea how. I even had to fail to turn up to ACCU 2016 which I was supposed to be chairing. I managed four of six scheduled sessions before ending up as an in-patient with a fever. I also was getting peripheral neuropathy in the left big toe – more on this later.

Things got a lot better cancer wise except that I was getting worse and worse right side sciatica. So trips to Royal Marsden Hospital, Chelsea for some radiotherapy. 20 Gray in five fractions put paid to the sciatica. Big Win.

I did some work for clients in the second half of 2016 and the first quarter of 2017. Whilst it was fun, and I think I did good jobs, there was a tension between being available for clients and being available for medics. After discussion with my financial advisor, I decided to declare myself retired as of 2017-03-31. My financial advisor sorted out my pensions and I decided to pay myself a monthly income such as to avoid paying tax. So big cut in income.

With no paid work, I decided to have my inguinal hernia repaired – I should have done a lot earlier than I did, there is another moral: do not live with a hernia, get it repaired. Everything seemed to go well except that a week after the surgery I got a massive hæmatoma. I shall leave discussion of that to another time. Lots of fun, and depressing, stories of a long weekend in one of St George’s surgical wards.

A hang-over from the earlier chemotherapy was that the nail bed of my left big toe had died, same toe that had peripheral neuropathy from the chemotherapy. So the local podiatrist fixed that by taking off the big toe nail. I haven’t missed it.

My cancer was getting worse but not rapidly so the consultant thought maybe some localised radiation in the bone would help shrink the metastases. So off to Royal Marsden Hospital again (Sutton initially but then Chelsea for all but the initial consultation). A series of six injections of Ra223 every four weeks. It didn’t seem to do anything magical but neither was it a total failure.

Consultant then thought lets do a bit more hormone therapy, so abiraterone acetate for four months. Sadly it did almost no good and gave me high blood pressure. So on to blood pressure reducing drugs. Managed to ditch them a year later thankfully.

Various metastases in the spine were looking like they were pressing on nerves. This is a Very Bad Thing. So off to Royal Marsden Hospital for a blast of radiotherapy, 8 Gray in one fraction. Had some effect, but nothing like as good as the earlier treatment for sciatica.

Then some more chemotherapy, cabazitaxel this time. I got a fever after the first session, so two weeks in St George’s. Having recovered from that they did the second session and I had a full on allergic reaction, anaphylaxis. Long story of reactions to anti-histamines, steroids at too low a level (fixed by GP), shingles, and then post-herpetic neuralgia. If it could go wrong it did. Fortunately I am retired so no conflict with work and income generation. Seven or eight months recovery time though.

Come New Year 2020, time for more radiotherapy due to pains, weaknesses and numbnesses in various places. Consultant did some naughty cheating of the system to get me in quickly. Excellent stuff. 20 Gray in five fraction in two different places on the spine – so 40 Gray overall. After five months it appears to have sort of worked. Long story. The Big Event was though meeting Bernie Fineman and his wife, Lisa. I totally disagree with his politics, but what a person and with some wonderful stories.

Then February to June 2020 cabazitaxel chemotherapy using slow delivery with massive anti-histamines and steroids to avoid anaphylaxis. First three sessions as an in-patient then four sessions as an out-patient. Consultant terminated the programme as it had stopped having the needed effect and my body had had enough.

And so here we are five years on from first being put into palliative care and three years on from me writing my last post. I am sure I could have written some posts, but I just never could get to do it.

I think there is no way I could have worked in the last three years so very good job I declared myself retired.

Hopefully hiatus now done, and years more of posts. Thanks to the NHS, my GPs, all the staff at Trevor Howell Day Unit, Trevor Howell Ward, Gordon Smith Ward, uro-oncology clinics, St George’s Hospital, radiotherapy medics, and the staff in the radiology department at Royal Marsden Hospital.

Moral of the story: get your PSA tested sooner rather than later.

Early detection is exactly what I didn’t have which is why I now have metastases throughout my skeleton and am somewhat unlikely to make it for another five years. I will though be doing technical posts on a fairly regular basis for as long as I can and have material for.

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