Tag Archives: Southampton General Hospital

Good News and Bad News

The Good News Is…

…Six weeks after my radiotherapy finished I have had my blood sampled and tested for PSA level. During a consultation with the oncologist two days ago, it was revealed to me that the level was 0.02, which apparently, is as good as I might hope for. I am, it seems, in remission.

I will be subjected to blood tests to monitor PSA levels for the rest of my life or until the cancer returns, which if it does, will hopefully be some years from now.

The consultant was of the opinion that I was somewhat subdued considering the good news. Possibly depressed. I pointed out that although I was very happy with the outcome (thus far) with the cancer treatment, I had further health issues, as yet unresolved, which had become evident during the previous two months.

The Bad News is…

…During a routine appointment with my GP, for which I had a list of things to discuss, I got to the third or fourth item which was, chest pains. Upon hearing my description of the pain I was experiencing, the doctor instructed me to go straight to the A+E department at the hospital. Apparently, I may already have had a heart attack.

I went to A+E as instructed and very quickly was hooked up to an ECG machine and a cannula inserted into my arm. Over the course of the next several hours I was subjected to various tests and examinations before being told that nothing bad had been found and was I discharged in the early hours of the morning into the care of a very nice taxi driver.

It is possible that the pain is yet another side effect of hormone therapy, or perhaps related to the heart murmur that was recently discovered. The report on the heart murmur indicates that intervention is not required and I should have a further examination in two years from now. So perhaps not a great cause for concern.

I am also waiting to attend a vascular clinic as I have a possible problem with the blood supply to my right calf. I have an appointment for three weeks from now and I am trying to stay away from Doctor Google.

More Good News

I have started swimming again and also go to the gym several times a week. I am making good progress and have got some muscle tone back. It was quite scary to see how far my physical strength had diminished but I will be persevering with it as I can already feel the benefit.

In addition, I have not seemed to have suffered much in the way of side effects from the radiotherapy. Fatigue mostly but the exercise will help combat that. As I regard myself as a side effect magnet, I am really happy not to have got any of the nastier effects.

I am not sure whether I should end this blog now or should I report periodically on how the test results go and possibly updates on the other health issues. Feedback would be appreciated. Whatever happens, I would like to thank everyone for the support they have shown during a very difficult time.

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.

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.

Diagnosis

The day finally arrived to visit the hospital to find out exactly what was wrong. All I knew up until then was my prostate was enlarged. It could be benign or not be benign.

The information was given to me by a specialist nurse. The same one who had previously inserted a camera into my penis and a finger into my backside. Mercifully, not both at the same time. She explained the state of the cancer and what it meant in terms of types of treatment available to me. Assuring me that the intention would be to cure it.

I have a grade 2 cancer with a score of 7 (3+4) on the Gleason Score. It was mostly still contained within the prostate but there was a small section which was close to spreading and so it is classed as Locally Advanced. Not exactly a death sentence but not really a cause for celebration.

I was given a large and comprehensive information pack covering diagnosis, treatment, help and support. I will be doing a lot of reading and research in the coming weeks.

Next stop, appointments with two consultants on the same day to discuss the treatments available to me.

Alarm

Following the transrectal biopsy, the blood in the urine stopped after a day and the blood in my poo stopped after two days. Great! The pain gradually diminished and after about four days I thought I was back to normal. How wrong I was.

During one of my frequent trips to the bathroom, it became extremely painful to urinate and I had a sudden attack of “the chills”. On my way back downstairs, I began to feel dizzy, which was very alarming.

I read the information leaflet which had been provided at the hospital and found that I was suffering from almost all of the symptoms listed, except possibly, a raised heartbeat. The instructions were to go straight to A&E and if I had nobody to drive me there I should call 999. As I was alone I called 999.

I asked for the ambulance service and was put through to someone who appeared very reluctant to help me. After I described my situation, she asked me why I thought I needed an ambulance. I read to her the instructions given to me at the hospital and asked her which part she disagreed with. She then asked if I had all of the symptoms including the raised heartbeat. I replied that I thought that my heartrate was fine until I got into conversation with her and now it was rising rapidly. She decided she needed advice from a colleague or supervisor and excused herself. After a brief interval she was back, informing me there was an ambulance on the way, assuring me that I was a priority.

Within a few minutes a paramedic had arrived in a car, followed soon afterwards by an ambulance with a crew of three. With four emergency personnel with all of their bulky equipment, my tiny lounge had never been so crowded. It did not take long to verify that I was in need of prompt medical attention and I was transported to the General Hospital in Southampton, which became my home for 5 days.

« Older Entries