Doubts

It has been a week since I had the terrible reaction to the hormone injection and I am pleased to say that so far, there has been no recurrence.

The clinical trials team have been in touch with me this week, twice. The first time was to inform me of the result of the bone scan. The result was good. No cancer in my bones and no reason why I should not take part in the trial. I just had to wait to be “randomised” by the computer to find out which “arm” of the trial I would be in. There were four possibilities with varied treatment.

The second call from the trials team was to tell me that I had now been randomised and the computer had decided that I would go into the group which was receiving the basic treatment. I have to say I was disappointed. I had hoped that I would be in a group which would get at least the treatment that I would have chosen for myself. There was no point in trying to hide my disappointment from the researcher and I was still reeling from the episode following the hormone injection previously.

I told the researcher that I was having doubts. Not necessarily with the clinical trials but that I was unsure whether I wished to have any treatment at all. My mind keeps coming back to the question of quality of life and it is giving me a hard time in trying to work out which will be the best way to go. For me. It is difficult to reconcile that, before last Xmas, I was “living the dream”, feeling fit and comfortably running up to 5km. Following the tests, diagnosis and commencement of treatment, my dream is now a nightmare and I probably could not run a 100m.

When I signed up for the clinical trials, I was not being altruistic. Quite the opposite. I am a very selfish person and I would have been hoping to get some benefit from taking part. That is likely to not be the case now so if I do decide to have treatment, I will probably fall back on the choices offered to me when I was diagnosed. I don’t have to decide yet. Not for another month at least.

Unusually, I am stuck for something funny to put in this post so I am going to add a little verse that I put in a facebook conversation recently. I need humour!

So it's true, no longer a rumour.
I have got a prostate tumour.
But I'm not one for quitting
And hormones permitting,
I won't lose my sense of humour.

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Last Post

In my last post I wrote that I had not had any side effects from the hormone treatment. Not for the first time I was a bit premature. Within two hours of publishing that blog post, something started happening in my body, which would, over the next few hours, supersede all previous bad experiences as it became the worst event in my life, ever. Really!!

It started out with the chills, a slightly raised temperature and aches and pains in my chest, arms, shoulders etc. Almost everywhere in fact. The symptoms were similiar to those of flu, although it could not have been that as I had my flu vaccination back in the autumn. The special jab for over 65s (how does flu know how old you are?).

Similar symptoms also, to the infection that saw me hospitalised earlier this year. A voice somewhere in the labyrinth of my mind was screaming, “not the hospital again, not another bloody catheter! I won’t go!” I fought off the rising panic, realising that it was likeley to be side effects from the hormones and I should wait and see how it developed. I phoned my eldest daughter, Melanie, and explained the situation and asked if she could check on me in three hours, which of course she agreed to do.

This had all begun at about 3pm and when Melanie called at around 6pm, I was in quite a bad way. A couple of years ago I had gout in my ankle. It only lasted a couple of days as it was quickly identified as a side effect (pattern forming) of a drug I had been prescibed for acid reflux. I can testify however, that gout is one of the most painful experiences you can have. The pain I was feeling this time made gout seem trivial. I felt as if I had been beaten soundly with a baseball bat and then rolled down the side of a mountain. I hurt badly.

A readthrough of the possible side effects of Decapeptyl SR 11.25, reinforced my fears that the drug was responsible for my condition. The only effect that I seemed not to have, was blurred vision. Handy really, as at least I was able to read which ones I did have.

I curled up into a foetal position in which I remained for most of the night. I hardly dared move as the pain was so intense. The responsibility for checking on me passed to my younger daughter, Jo, but apart from checking to see if I was alive, there was nothing that could be done. I just had to ride it out. I drifted in and out of sleep, or consciousness, until 5am. The whole episode had lasted for fourteen hours and left me in a dire state, like a blob of jelly.

For the next 24 hours I was feeling very weak and severely depressed. My mind toying with the idea of not having treatment. Was it possible that the cure could be worse than the disease? Would I be sacrificing quality of life in attempting to gain more quantity of life? My experience so far, is that it would not be worth it. I still have ten weeks before my next injection is due and if there are no similar episodes before then, well I guess I would continue with the treatment. Once again it is wait and see.

Fiasco

Although it comes as something of a shock when you are told you have cancer, it can be tempered by the knowledge that in your particular case, it has not spread yet and may be curable. For me, that was the best thing I heard when I was told of my diagnosis. After that comes so much information, both about your particular cancer and the choices of treatment, it can be overwhelming.

I made up my mind very quickly that I did not want surgery, choosing hormone therapy followed by radiotherapy. I was told that hormone treatment would probably give me symptoms of the menopause. “Not likely to be a problem for me”, I informed the nurse. “I’ve experienced quite a few of those by association.”

“Well, now you get to have one of your own”, she replied.

My mind was made up though. It was down to personal preference and I did not have any doubts. That is, until I read and re-read all the information that was available. Then I had doubts. And more doubts.

The doubts were mostly centred on the side effects of the various treatments. Many side effects are available and nobody is assured of getting any or all of them. That, however, was also the information given to me about the chances of contracting an infection following a trans rectal biopsy. Not much chance, hardly any, was how I interpreted it. That small chance became larger and larger a few days after the procedure, as I lay in a hospital bed suffering from a massive infection, which so wasted me that almost two months later, I am still not fully recovered.

The prescription for my hormone treatment had been given to me to deliver to my GP. A course of anti androgens for four weeks with an injection of one of a choice of three drugs to be started the following week. The choice being made by my GP. I read up on all of them and reached the conclusion that I did not relish taking any of them, so I made an appointment to see the GP to take place immediately I had had the whole body scan.

During the intervening period I went on line to book an appointment with the nurse for a vaccination against pneumonia. While I was online I saw that I had already been assigned to a hormone drug. It just happened to be the cheapest of the three. I wanted to make sure that the choice was being made based on medical history and not cost, so I phoned the surgery to see if I could schedule the appointments so that I saw the doctor before the nurse. It made sense to me but no matter how hard I tried I could not get any help from the receptionist. I would have to wait a further three weeks to get synchronised appointments.

What started out as an urgent referral last October which should have seen me start treatment within eighteen weeks was now turning into a fiasco, timetable wise. I was already at twenty two weeks and my fate was in the hands of a “jobsworth” receptionist. Not one to suffer fools, I took a different route and in a short time I had an informative chat with a consultant at the General Hospital, who managed to allay my latest round of fears.

During the conversation with the GP’s receptionist, I explained about the nurse having to inject the hormone drug into me and asked whether it was something that would be readily available. She told me that I would need to collect a prescription from the surgery, take it to the pharmacy and bring it with me to see the nurse. I said I would collect it the following day.

It was the following afternoon that I turned up to collect the prescription, only to be met with a notice on the front door proclaiming, ” Closed for training.”

“Not soon enough”, was my first thought. “A few weeks sooner would have been better”, was my next. I was to be injected the following day with a drug that I did not have the prescription for. They could have warned me about being closed for training. Maybe communication was one of the topics. Mmm, this could be going better.

I walked the short distance to the pharmacy, where I explained the situation and inquired if they had the drug in stock. Fortunately my memory is still quite good and I remembered the drug, Decapeptyl SR11.25mg. No, they did not have it in stock but they would order it without having the prescription and I would be able to collect it the following morning in time for my appointment. Nice people at the pharmacy.

As a result, I am now into my third week of pills and second week of the long term drug after being injected. So far, I am not aware of any major side effects. Early days.

Old Bones

The final scan before commencing treatment was a Whole Body Scan. This took place at the Department of Nuclear Medicine at Southampton General Hospital. This would involve being injected with a small amount of radioctive material, then spending the next three hours drinking copious amounts of water whilst waiting for the material to settle into my bones.

As usual I arrived early at the hospital and was fortunate to be called in to start the procedure early. Perhaps I could save some money off the car parking charges, which are very expensive. The hospital uses the parking fees to maintain the car park with any surplus going to patient services, whatever that means. For those, who have a long term illness, requiring frequent visits to the hospital, a valuable patient service might be having to pay less to park their car.

Meanwhile, back in Nuclear Medicine, I was being prepared for the input of radioactive material – via a canula. I looked around me. Just one nurse. “Are you alone?” I asked.

“Yes”, she replied. “Why?”

“Just wondering if there was going to be a trainee this time”, I said.

“Not today”, she replied, making me feel much more relaxed.

After looking at both my arms, which were covered in bruises and scratches from previous encounters with needles etc., she decide to insert the canula into the back of my left hand, giving the usual warning, “you may feel a scratch”. Why do they say scratch instead of prick? The definition of prick is more suitable. Well, one definition is.

“I’ve felt a scratch in almost every department in the hospital”, just doesn’t have the right ring to it.

Canula in, radioactive material in, canula out. All within a few minutes. I was now free to roam the hospital for the next three hours, as long as I drank lots of water. If I needed a pee, I had to flush the toilet twice to avoid leaving contamination. Radioactive pee!!

I made good use of the time by seeking out people who may be able to address some concerns I had about the treatment I was going to be receiving. Particularly the hormone therapy, which has many potential side effects. None of which are particularly appealing. I was fortunate to be able to have a chat with one of the research team for the clinical trial I have signed up for. She was very helpful in answering some of my questions and arranging for someone to phone me with the answers she could not provide. How wonderful these people are.

I then popped into the Macmillan Centre for a coffee and a chat. Free coffee and biscuits plus a wealth of information is available for people suffering from cancer. There is lots of support around if you need it.

Time to go back to the Nuclear Medicine Department for my scan. The scan itself was a slow process and the staff were chatting to me about various things they could see as the imaging was taking place. They could see that I probably suffered pain in my hands, wrists and elbows. Also that I had previously suffered a back injury and broken ribs. My poor old bones had suffered a bit over the years.

Finally all the tests and scans were done and soon my treatment would begin.