What has been going on – well life as normal except that, as it was later described, I had a few months history of lower urinary tract symptoms (i.e. I had found I had an issue peeing especially first thing in the morning). Liz must have been prescient when she bought me Bill Bryson’s latest book for Christmas. So when I next saw my GP I mentioned this and she arranged for a PSA (Prostate Specific Antigen apparently) test and also confirmed that I had an enlarged prostate (if you really want to know I can tell you how she diagnosed that). When the PSA tests results came back they showed an elevated level. Doesn’t prove anything by itself other that shouting “have more tests – there may be a problem”.
So I saw an Urology Consultant and two days later I was looking at an MRI machine from the inside. Very relaxing. Then an NMR scan where I was injected with a radioisotope given a couple of hours to cook and then back for a lie down. I took a CD of Adiemus to listen to for the hour I was being scanned. I could see images building up on the screen at the side of the room but they were too small for me to really see what they showed other than a few dark areas. The third test was a prostate ultrasound and biopsy. The Consultant said it would be quite uncomfortable and he wasn’t wrong! I winced a bit (and even said ‘ow’ once).
A couple of weeks later and the results were in. Prostate cancer confirmed – apparently without treatment I had got 18 months. My silent reaction was something like “oh crap”. I think I was coming to terms with the fact that what I will call my Bryson issue (after the title of his latest book) was more than just an enlarged prostate and PC was changing from possible to probable. However I had also been reassuring myself with the knowledge that I knew several people with PC who were doing well including one who had been diagnosed 10-15 years ago. I guess that the big difference was that they were receiving the appropriate treatment.
So the first thing was to go on hormone therapy to reduce the testosterone that feeds the cancer. So we left with a sheaf of results and a letter for my GP to arrange for me to have a weeks worth of pills to stop ‘tumour flare’ when I have an injection of triptorelin. This injection will have to be repeated every three months. We were due to go away for the weekend for granddaughter #1’s birthday so I chased up the prescription the next day and started on the tablets.
That weekend we had a most enjoyable four days in a log cabin in the New Forest. The granddaughters didn’t know we were there (we arrived first) and first wondered why the car outside the cabin looked like ours and then were excited to see us. The Harry Potter Choosing Hat birthday cake was also a great hit.
Next was a consultation with the Medical Oncology Consultant who explained the options and said that I should start a course of chemotherapy. This would be six doses three weeks apart at Stoke Mandeville Hospital (SMH). I was also offered the opportunity to take part in a STAMPEDE trial. This has a number of arms one of which used a drug which was being developed when I was at BTG so I was quite interested in that (my spies tell me it really works). I had a pre-chemo meeting set up the week before it started and a date to start was set as 31st March. At the meeting I also discussed the trial and signed up for it – it is a randomised trial so I didn’t know which arm I would be on but when they had rolled the dice in a distant lab (or picked a number out a hat or whatever they do) I was allocated a key position (well I like to think of it as a key position) in Group A – the control group. A little disappointing but there is always the option to have aberaterone acetate later if needed and the upside is that I will be monitored more closely and won’t have to remember to take even more tablets.
We had been given plenty of information to read including some excellent booklets from Macmillan and all the medical staff took time to explain what was happening and to answer questions. So I read about all the side effects that might or might not happen – some of them seem to be the opposite of each other so if I got both of them they should cancel each other out. With so much information it was easy to imagine that I was suffering from all sorts of side-effects but hopefully I will be able to distinguish the imagined from the real.
What was clear (and we had started to take account of this) was that we would have to rearrange our life. One of the impacts of the chemo (docetaxel) would be a lowering of my white blood cell count which would make me very vulnerable to infections. This would be OK for about five days and drop to its lowest 7-10 days after each chemo session before recovering so that they could zap me again (if all goes well). I have emergency numbers to call if I feel unwell or if I have a high or low temperature and a card to fast track me through A&E if necessary (a wrist band as well would be good – I think I will suggest it). Other potential side effects include tiredness (will anyone notice) and hair loss – so I had a haircut the day before chemo started so that the loss of what was left wouldn’t be too extreme. When the granddaughters saw the haircut they just laughed – but they have been promised a head-shaving party if it does fall out.
More seriously we have had to take a sabbatical from various committees, although we can keep in touch by phone and e-mail. We will not take the granddaughters into school and will have to be careful about how and when we take our daughter out avoiding anywhere where someone might have a cold or fever.
I have had to cancel a couple of talks I was due to give to local U3A groups. I have told them that at the moment I don’t know how the chemo will affect me, so far no bad side effects but it’s early days, but I will be avoiding places where I might pick up an infection and possibly will get quite tired (my sister in law said she slept for three days after her chemo finished). It may be that I will have no side effects or it may be otherwise and obviously I wouldn’t want to cancel with only a day or two’s notice. I will be keeping away from anywhere I might pick up an infection for the next few months. The granddaughters will probably have to Facetime me! Hopefully fully back in action after that. So with a bit of luck I will be fit and raring to go after August.
A fellow Trustee of an organisation I am involved in who had chemo a few years ago said that “at least you’ll find out what you look like bald. I always was really annoyed that I was fine until they started the treatment! It will be not nice, I can’t say it’ll be fine because it won’t, but better than the alternative. You will get better.” Another said “I am sure you are approaching it with your usual stoicism and pragmatism but still a difficult time .”
So here goes – in purdah for a few months – but at least we are heading into summer and everyone is being very supportive.
Next post: Three days, three needles