On New Years Eve 2016 we posted our first blog to keep friends and family up-to-date with John’s cancer treatment over the coming months. Even our naturally optimistic outlook did not allow us to dream that we would be updating the blog 6 years later. Our first posts highlighted the treatment and side effects of the chemo, and we set out to be truthful and honest about our experiences. We received supportive comments about our experiences, particularly the description of the chemo side-effects which most people understand to be limited to hair loss and fatigue – not so! Having got through the chemo life ticked along nicely and there was really little to report health-wise in the blog which then developed into regular holiday updates. Having given up full-time work, John has said on many occasions over the last 6 years that he has never felt so well.
As you are aware, we attend regular oncology appointments where the PSA (a marker of the cancer’s spread) is monitored. John has shared his PSA graphs in this blog, which shows the expected steady rise of the PSA. Our consultant, Dr Woodward, advised that when the PSA reached 10, or if it rose sharply, she would look to introduce another treatment. There is a temptation to ask for any treatment to be given immediately if it can help, but we know that given the limited options; the time span for efficacy of treatments, and anticipated side effects, timing of changing treatments is important. In September this year the PSA reached 11 so Dr Woodward prescribed a new drug, Bicalutamide which she described as a ‘gentler’ treatment with fewer anticipated side effects. Earlier this month John had another routine blood test which showed that the PSA had jumped to 17 – the largest rise that we have seen, which to be honest was disappointing, alarming and concerning. Dr Woodward then introduced the ‘less gentle’ Enzalutamide which comes with expected side effects including fatigue. She also mentioned possibly having another round of chemo at some point. John has now come off the Stampede Trial and no longer takes the trial drug Metformin. Having come off the Stampede Trial there may be other options to join other trials which we need to investigate and research.
In hindsight perhaps neither of us should have been surprised at the rise in PSA, as for the last 6 months or so John has been experiencing a few niggly problems. I said earlier that we aim to be truthful and honest sharing our experiences, but we have considered keeping some things private. However, we have come to realise that what is happening is natural, and due to no fault of our own, and if our experiences can help to inform others of the implications of prostate cancer, we ought to share our story. Dame Deborah James (Bowel Babe) proved that there should be no shame in talking about poo, so we have a duty to do the same for prostate cancer.
If you don’t wish to hear the details look away now….
About 6 months ago John started to need to pee more regularly and with a little urgency. This is typical for older chaps, but particularly so with prostate issues as pressure is put on the urethra by the enlarged prostate. Another drug was introduced to help combat the symptoms which we fondly named Turbo Piss as initially it helped enormously. The Turbo Piss effect was short lived, and John found that he was getting up many times during the night – every 10 minutes or so, and was unable to empty his bladder. This became exhausting and debilitating. We have commented many times before about the amazing treatment that we have received from the NHS. This treatment has continued and John has been seen at short notice on several occasions – incredible when we hear such negative reports about the NHS which coincide with industrial action being taken. We can’t fault the service we have received and it feels like we are getting private treatment. The week before Christmas John was seen at short notice by a urology nurse. He underwent a urodynamics test which basically involved peeing in a bucket and then having an ultrasound scan which showed that his bladder was not emptying. To his great relief the nurse showed him how to carry out ‘intermittent self-catheterization’ which he now does before going to bed at night. It’s a temporary measure, but has been of great benefit and we are both able to sleep better – hurrah. It does feel like we have suddenly and prematurely entered the realms of ‘old man’s territory’, but it’s still a minor price to pay in the grand scheme of things. The next step is to have an operation known as a TURP (Transurethral resection of the prostate) otherwise known as a ‘re-bore’. If any chaps are reading this without wincing at the thought, then you are dead hard and I’m very impressed. Again, incredibly, John has an assessment appointment with a Urology consultant in the first week of January. Our NHS is second to none.
These recent issues had little impact on us having a great Christmas shared with nearest and dearest:
As I write this John is doing a stock-check on seeds and is about to place a seed order ready for spring propagation. We start the New Year with excitement looking forward to John having the ‘TURP’ in good time, and have fingers crossed that it doesn’t affect our holiday plans to celebrate my 60th in March.
If you are still reading, we wish you a very Happy and Healthy 2023. Don’t put things off, and enjoy life. 💕
