Monthly Archives: March 2019

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.

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.

Floodgates

The penultimate scan, prior to commencing treatment, was a CT scan on my chest, abdomen and pelvic region. Not too time consuming and nothing sinister to worry about. Except maybe the injection of dye, which is used to improve image quality. Except also, the insertion of the canula through which the dye is injected.

During my limited time as a season ticket holder at Southampton General Hospital, I have already made numerous visits, many of which I have recounted in these posts, What I have not mentioned previously, is that frequently, when you turn up for your appointment, you are asked if you mind having a student present or perhaps a trainee carrying out part of the procedure.

I always say yes. How else are the next generation of doctors and nurses etc. going to gain experience? It’s never been a problem to me. Well, except for the two occasions when it has been a problem.

The first time was when I was having my blood sampled and an overenthusiastic trainee, despite my bulging veins, had difficulty in inserting a needle into me. So much so that one attempt resulted in the needle being bent. “Too much iron in my blood”, I quipped. This was ignored by my tormentor as she moved to my other side and prepared to launch an attack on my other arm.

Fortunately, the qualified nurse/mentor stepped in at this point and deftly inserted the needle and extracted the samples with such expertise that I barely noticed. Thus saving the trainee from further embarrassment and me, I might add selfishly, from sustaining further damage.

The second time as you may have guessed by now, was when I was being prepared for the CT scan. “Hello. My name is ******, I’m a trainee and I wonder if you would mind if I inserted the canula for you?”.

“Not at all”, I replied, trying to suppress the memory of a needle being bent against my arm. Not that I was able to suppress it for long. I have a very prominent vein situated in the crook of my right arm. It is almost as if it was put there specifically for people collecting blood samples or for the insertion of a canula. Needless to say, the trainee homed in on it straight away.

In the space of a nano second, the needle was in my arm and then out of my arm, followed by a great arc of my blood making its way across the room. “Oh no!” cried the trainee.

“What are you doing?” demanded her experienced colleague.

“You’ve opened the floodgates now. Could this be life threatening?”, I asked. I was doing nothing to alleviate the situation, as I watched this fountain of an essential part of me, exit my right arm.

Well, life threatening or not, the flow of blood was quickly stemmed and the expert, in almost the same way as in the previous incident, stepped in and inserted the canula into my other arm, which still had blood left in it. It was hardly noticeable. I could not help but wonder, how many cases of projectile bleeding there might be between leaving the level of trainee and arriving at the level of expert.

The scan then proceeded without further complication. Just one to go before starting my treatment.

Sleight of Hand

When I signed up for the Pivotal Boost clinical trial I was given a letter to take to my GP’s surgery. As I had to pass the surgery, I delivered the letter on my way home. The receptionist made a copy and returned the original. The letter specified which drug I should be prescribed to begin my hormone therapy, which was an antiandrogen to be taken daily for four weeks, starting after my final scan. Also listed were three different drugs together with the annual cost for each one. It seems that the GP would choose which one I should be prescribed (a decision I hoped would not be made on cost). An injection would be given periodically and indefinitely, commencing one week after the antiandrogens.

After about a week, I phoned the surgery to ask if my prescription was ready for collection. “What prescription?” was the reply from the receptionist.

“For my hormone therapy,” I informed her.

“What hormone therapy?” she asked.

“For my cancer treatment”, said I.

There then followed a discussion as to the whereabouts of my prescription, and/or the letter from the hospital. It seems it or they had vanished. Fortunately, as I still had the original, I was able to return to the surgery and they took another copy, assuring me that all would be well and I could collect the prescription in a few days.

As it happened, I had an appointment booked with the practice nurse for the following day for immunisation against pneumonia. After having the injection, I mentioned to the nurse that I was having problems with my prescription. “Wait there a moment”, she instructed as she left the room. She returned just a minute or two later waving a prescription in her hand. It was dated the 20th February the date that I had first taken the letter into the surgery. For almost two weeks it had been missing and suddenly, not missing at all. How come? Sleight of Hand perhaps.

Options

When the specialist nurse told me I had prostate cancer she advised me of the options I would be given. I could have no treatment, which involved “watching and waiting”. Basically just letting things develop before taking any action. Or, I could choose to have surgery, which would entail removal of the prostate gland. Finally, I could opt to have a combination of hormone therapy and radiotherapy. I was given information on all of the options so that I could make myself familiar with the processes before having further meetings with the consultants.

I was also told that I would need to have a urine flow test on my next visit which meant I had to hold on to my pee for a few hours beforehand. Something that has not been so easy in recent times although until now I have not had any mishaps.

Consultations

Within days I received a letter informing me I had appointments with two consultants on the same morning. The first was to discuss surgery and the second to discuss radiotherapy etc. There would be time in between for me to have my urine flow test.

On the morning of the appointments I arrived early at the hospital, had a coffee at Costa and then popped into M+S to buy a litre bottle of water. I needed a full bladder for the pee test. I then proceeded to the outpatients’ waiting room, where I put on my headphones, got out my Kindle and relaxed while also drinking plenty of water. Mentally preparing myself for what was about to come. Life could hardly be much better. Could it?

My first appointment was running late when I was called in. This one was to take me through my condition and discuss the option for surgery. I listened intently to what was being said to me but the more I heard, the less likely it seemed that I would take this option. If the guy had been a salesman, he would have been talking himself out of a deal. However, I did not have to make a decision yet and I still had to hear about the alternatives.

On leaving the consultation room, I immediately went to check in for my next appointment, only to be told that my name had already been called. I was told not to worry and within a minute or two the doctor called for me again. No worries indeed.

Following the introductions, I asked the doctor, “not wishing to be rude but will you be trying to sell me this treatment? does your budget rely on a certain amount of people having treatment?” The doctor looked a bit shocked but assured me that was not the case. My reason for asking was that in the information pack given to me previously, was an invitation to take part in a clinical trial and I was seriously considering it.

During the discussion that followed, there was a knock at the door and the doctor had to leave to attend to something else. She apologised, telling me she should not be long and then she was gone. I went back to reading my Kindle.

Probably no more than five minutes passed before the doctor returned. More apologies were made, discussions resumed and then I felt the urge to pee. Nowadays, when I get that urge, it’s not exactly an early warning. More of a demand for instant action. Whatever was said to me in that room after that moment was lost on me. I remembered none of it. All I could do was concentrate on not pissing myself.

After what seemed an eternity, the meeting was over. I asked the doctor if she could notify the specialist nurse that I was here for the flow test and that the situation was quite urgent. Fortunately for me, the nurse was close by as was the room for the test and both flowing and testing could begin. Not a moment too soon. Were they taking the piss? Maybe.

The pee test result was fine and was followed by an ultrasound scan to see what was left in my bladder. Not much, I was relieved to hear. I was free to leave. By the time I got home I realised that I could remember everything about the surgery option and very little about the radiotherapy and/or clinical trial option. I had lost my focus and had little choice but to phone the hospital and ask for another appointment. No problem, they said and I was given an appointment for the following week. I guess they are used to this sort of thing.

Consultion Take 2

During the intervening days, having decided againsy surgery, I re-read all of the literature I had on Hormone Therapy and Radiotherapy plus the clinical trial, which is known as Pivotal Boost. I took the precaution of writing down any questions I had in readiness for the appointment.

It all went very well this time and I made the decision there and then to take part in the trial. The decision is not binding and should I change my mind, I can opt out without it having an adverse effect on the treatment I then receive. I will be allocated to a group randomly to determine which specific treatment I get and in the meantime, I have to have yet more scans.

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