A Dim View

The combined effects of the massive post-biopsy infection I suffered, plus the horrific reaction to the first hormone treatment I was given, left me severely weakened. Add in the radiotherapy and the less horrific but nevertheless, weakening effects of the alternative hormone therapy I was given and you have a grown man with the physical strength of a toddler. On top of that, I was told I had a heart murmur and blocked arteries. Surely it can’t get any worse.

During all this time I remained employed and my bosses were magnificent. I have received unwavering support from them throughout. Despite my poor physical condition I was determined to go back to work and they waited patiently as I went through successive sick notes, telling them after I submitted each one, “this should be the last. I will be back to work soon”. I was being overly optimistic. Not something I am known for in the workplace.

After six months or so, I was finally feeling up to the challenge and I began a, “phased return to work”. No demands. Just, “do what you feel is right. Don’t overdo it.”, I was told. Well, it was hard to begin with but with the help of my colleagues I got to the point where I was able to work alone. Fantastic! I was improving physically and mentally each day.

Then one day, I arrived home to find a letter from the DVLA on the doormat. They had suspended my HGV entitlement because, according to my recent medical, I was almost blind. I hastily contacted them to correct the obvious mistake, as although my eyesight is no longer perfect, it is quite good apart from reading small-print. Who reads it anyway?

During the ensuing conversation it transpired that my GP had filled in the form incorrectly. He had recorded that I could only read as far as the second line of the chart, whereas I could read as far as the second to bottom line, both with and without glasses. A massive difference with massive consequences. An admission of the mistake by the doctor was not enough to satisfy the authority and I had to go to an optometrist to have an examination and get a certificate to send to the DVLA.

Amazingly, although my HGV entitlement was suspended, my car entitlement was not. It took me some time to process this information because I was of the opinion that, although the perspective may change if you were seeing something from a truck instead of a car, the range of your vision would remain the same. It’s absurd to think that any potential disaster would be limited by the size of one vehicle in what is an infinite number of possible scenarios. A nearly blind person driving a car. What could possibly happen?

I digress. There was nowhere locally where I could get an appointment at short notice so I had to drive from Southampton to Portsmouth for my eye test. All went well, as I expected it would and I returned to Southampton with much improved vision. On paper, at least. I posted the certificate off to the DVLA and relaxed, expecting my licence to be restored forthwith. Aaah. If only.

I waited a couple of days and then phoned the DVLA to enquire about the progress of my licence renewal. I had sent the eyesight certificate by recorded delivery and the tracker indicated that it had indeed been delivered. “It’s still in the post room”, I was informed. A phrase I was to hear a great deal in the coming weeks. “OK”, I replied, “I will call back”.

Although I was annoyed, to say the least, it was not a total disaster and even though I was temporarily banned from driving a truck, I was able to go out as a driver’s mate as the physical side of it was vitally important. Both in the short term, in maintaining and/or improving my current level of fitness and also in my long term rehabilitation. Physically and mentally.

Uphill Struggle

After hearing the phrase, “it’s still in the post room”, a couple of more times, my eyesight certificate finally emerged into the blinding light. “Great”, I said, “I look forward to receiving my licence in due course”.

“I’m afraid not sir”, was the reply. “You have to attend a clinic for further health checks. A letter is on its way to you”. No other information was forthcoming.

Sure enough, within a day or two, I received a letter informing me of the need to take a stress test. A cardio-vascular test to see if I was fit enough to drive a truck. I would be receiving more information plus an appointment in due course.

This was obviously because of my recently diagnosed, slightly faulty, heart valve. The one that I was told was not a problem and to come back in two years time for another check-up. The DVLA have their own medical team and clearly required a second opinion.

Once again, I digress. I received a letter from the Spire hospital in Southampton informing me of two appointments, The second was for a treadmill test to ascertain my level of cardio-vascular fitness. The first was for me to be examined to see if I was healthy enough to take the second test. i.e. a fitness test to see if I was fit enough to take a fitness test. I kid you not. The tests were several days apart and the bill was being paid by the DVLA.

I hastily did some research on the stress test so that I could put in some extra time at the gym to prepare for it. I knew I was making good progress as far as my overall fitness was concerned but I had my doubts about my ability to pass this test as it involved walking very fast for about twelve minutes with the machine on maximum incline, although it started off quite slowly. I thought my calf pain would kick in and that would put an end to it. It looked like it would be an uphill struggle.

I should not have worried. By the time I attended the first appointment ( the pre-test test), I had already managed a full simulation and suffered no reaction in my calf at all. The consultant assessed me as being fit enough to take the test and told me that they would be checking both my heart and my artery issues.

In between the pre-test test and the test, I continued preparation and I managed almost half an hour on the treadmill before there was any significant pain. My confidence grew.

On the day of the test I was a little nervous but when the time came to take the test, I walked it. I was even accused of showing off. I had no doubts though, that if I had not researched and prepared for it, I would have failed the test. My own fitness programme was quite demanding at the time but this would have been a step too far. And too steep.

A couple of days later I phoned the DVLA to check on progress. “It’s still in the post room”, I was told.

“But I was told it would be faxed directly from the hospital”, I replied.

“It was”, came the response, “straight to the post room”.

“Ok, I’ll call back”.

I called back a week or so later and was told that my application was still on hold and that there was a letter on its way to me. By now my licence had expired but I was able to continue driving under Section 88 of the Road Traffic Act 1988 subject to my doctor’s approval. Approval which I received from the good doctor, i.e. not the one who did my HGV medical. I was really building up resentment towards him. If he had not messed up my eyesight results, this would have all been over by now. Also, I had started my licence application two months before the expiry date and now it had gone beyond that. It was having quite an effect on me causing me a lot of stress.

I digress. The aforementioned letter arrived and it informed me that my new licence would not be issued until I could provide three successive, acceptable, blood pressure readings. These had to come from appointments on three separate days and had to be under the supervision of a GP. When he had filled in my medical form the doctor was required to provide three previous readings, of which there were many, due to my recent health issues. In spite of almost all of them being within the parameters set by the DVLA, he selected one which was way off the scale and was taken when I suffered the bad reaction to the first hormone drug I was injected with. A one off, never to be repeated anomaly. It was from months previously and had no relevance, yet he included it. Thus they rejected my application, pending acceptable results. More resentment building.

Also at this time, I was about to go on holiday to Gran Canaria. A much needed break after being ill for most of the year plus I was now beginning to show signs of the stress caused by the driving licence problems. Never-ending as they seemed to be. Unfortunately for me, I was unable to get the appointments before going on holiday so I asked them not to do anything with the paperwork until I returned. The DVLA had given four weeks to complete it so it should not be a problem.

However, whilst on holiday, I received a phone call from the surgery to tell me they had received paperwork from the DVLA which they had filled in and were about to return. “Noooooo!! Please don’t do that. Please lock it away until I return from my holiday”. The DVLA wanted new readings and they were providing historic ones dating from before they were requested. More resentment. More stress.

When I returned from my holiday, I managed to get three new blood pressure readings on three separate days and all within the parameters. I asked the nurse to type the results on a separate sheet of paper together with an explanation as what had happened and get the “bad doctor” to sign them. She then attached it to the official paperwork, placed it in an envelope which she sealed and then at my request, gave it to me to post because I couldn’t even trust them to get that right.

A few days later I phoned the DVLA to check on progress. “It’s still in the post room”, they said. “Ok, I’ll call back”. I never did call back because shortly afterwards I received my licence. It arrived just before Christmas. I had started the process in August. Four months earlier.

Strange Days Indeed

It has been a long time since I added to this blog. There were various reasons for this, not least of all because it is titled “Living With Prostate Cancer” and most of what has happened in the intervening period has had little to do with prostate cancer.

Life has been both a physical and mental rollercoaster since my radiotherapy finished and I think, in these times of even more uncertainty, it is time to unburden myself.

I may spread this over several posts but I ask you to stay with me on the journey I have been through. Hopefully there will be some light-hearted moments and there will undoubtedly be some of much darkness. We live in strange times and, I know, I am stranger than most.

The Road to Recovery

As I continued gymming and swimming to regain as much fitness as I could, the problem I had been suffering with my calf became more of a handicap. Also, it was frustrating not knowing exactly what the problem was and not being able to see a specialist in spite of having been in pain for almost six months.

“You’ll have to wait your turn”, I was told. Well, unwilling to wait because of the delay it was causing me on my road to recovery, I went back to Dr Google and, after much research, I diagnosed myself with Intermittent Claudication. Pain caused by blood not supplying enough oxygen to my calf.

Armed with this information, I went back to my GP, who reluctantly sent me for an examination at a local clinic where they hooked me up to anklets and bracelets and monitored my blood flow whilst I was horizontal and motionless on a couch. The practitioner/clinician informed me that everything was fine. Really?

Back to the GP’s surgery, where I was to become a pain in the proverbial for the rest of the summer. “Your blood is flowing freely”, said the doctor. “Yes”, I agreed, “but I didn’t complain about pain when I was lying in bed. The pain is when I am walking and becomes worse with distance and/or incline, so the examination was a waste of time”. He reluctantly agreed with me but insisted that he could do nothing to have me seen by a consultant any sooner and I must wait. Really?

Back to Dr Google yet again for more research. Much of the advice I found advised sufferers to walk until it hurt, which of course varied according to the individual, then rest for a few minutes until the pain subsided, then walk some more. Doing this, patients were gradually able to extend the distance they could walk by a few metres.

Personally, I was not able to walk more than four or five hundred metres before I was in total agony. Each time it felt like my calf muscle was torn. After a few minutes the pain always eased and it was possible to walk again for a few hundred metres more. This continued through the summer and during my many visits to the Ageas Bowl to watch cricket, I discovered that my limit was reached when walking around the perimeter of the spectator’s area before I was forced to rest. Most unsatisfactory and utterly depressing as I had just finished radiotherapy at the time and was hoping to become more active.

Back to Dr Google and more research. One day I stumbled upon an exercise regime for patients at Guy’s hospital who had claudication. “Ignore the pain”, it advised, “keep walking”. Really?

If you keep walking, the blood finds it way by flowing through smaller blood vessels. It’s a bit like how the traffic takes to the minor roads when the motorway is blocked. Although I was a bit sceptical at first, I gave it a go. Trying it out on a treadmill in the gym.

It was difficult. To keep walking while you are feeling a lot of pain is counter-intuitive to anyone who has had a nasty calf injury, which is exactly what it feels like but I persevered. With excellent results. It was baby steps at first but gradually, I extended the distance at which the pain kicked in until I almost stopped thinking about it.

Finally, I attended the vascular clinic where I was given an examination and a discussion took place about how I had diagnosed my problem and had started treatment which was having a positive effect. The consultant concluded that, based on his examination and the previous one, both of which were whilst I was motionless and horizontal, there was nothing wrong with me. Really?

I protested that I was not satisfied about how he had reached his conclusion and after some discussion he conceded that it was possible that he was wrong. “Possible but unlikely”, he said. However, he sent me for a scan and it was discovered that I had a partially blocked artery. Really?

The consultant remained dismissive when I enquired what was needed re diet or exercise. Just keep doing what you have been doing courtesy of Google, was the response. Keep doing your exercises. Patient heal thyself, I thought.

I did carry on with the exercises and still do them now. I can walk seven or eight kilometres now without experiencing much pain and I am very happy with that.

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.

No Pain

It is now a week since I finished radiotherapy and so far, not much in the way of side effects. I must not get complacent as the effects can continue to get worse for some time after the treatment has ended. I am sorry if I am repeating myself but I cannot praise the staff in the radiotherapy department of Southampton General Hospital enough. They are superb!

As for the hormone therapy, it is over three weeks since I changed to a different drug and my life has been transformed. I was in so much pain before and it has completely gone. The hot flushes continue and have become slightly more intense but I am happy to take that instead of the pain. I will be on this drug for the next twenty one months but at last some light at the end of the tunnel.

I have to be wary that other things could be occurring unnoticed, such as thinning of my bones and loss of muscle tone but I can try and counter that by regular exercise. However, before I embark on any exercise program, I have to have a scan to check out my heart murmur. The scan is scheduled for two days time.

Pressure Drop

As the time approached for me to have my next hormone injection, I became more and more worried. After the disastrous effects of the first injection it was agreed that I should change to a different drug. Even so, I was extremely concerned that the next drug could have similar or worse effects. Quite frankly, I was terrified.

I had discussions with various people involved in my treatment but was unable to get the answers to my questions. Eventually I cancelled the appointment for the injection because I was not ready to risk being injected with 3 months worth of agony. It didn’t seem worth it. During the discussions I had with the clinical trials team, I was told that the drug was available in a one month dosage, however, it was something for the consultant oncologist to decide. A meeting was arranged and once my questions were answered, I was offered the the one month version and after weighing up the risks against the possible benefits, I decided to go ahead. 

The replacement drug, Zoladex , is implanted into the stomach and released over a period of time. So far, I am only experiencing hot flushes but I am very nervous of the possibility of the other side effects. On a positive note, apart from causing me much pain, the previous hormone drug, Decapeptyl, has been doing its job. My PSA level is down to 0.1. Normal being 0 to 2.5.

Meanwhile,I am now about two thirds of the way through my radiotherapy. I have had 13 of 20 “fractions”. It is time consuming, having to go to the hospital almost every day, but it has been largely uneventful. Apart from the machine breaking down on two occasions, one of which was when I was on it waiting for my treatment. Fortunately, that time, it was fixed quite quickly. The second time resulted in a lengthy delay for treatment and then a day off so that the staff could catch up with the backlog. The staff by the way are all absolutely fantastic. Their care and professionalism, with occasional humour, makes it easier to cope with a difficult subject.

One morning, however, on my way through the hospital to the radiotherapy department, I collapsed on a flight of stairs. Fortunately, I was only two steps from the bottom and fell against someone who broke my fall. I landed on my knees but escaped serious injury. I was surrounded by concerned and helpful people, some of the staff, who decided what to do with me. I was taken, in a wheelchair, to the Macmillan oncology ward where I was fully examined and subjected to various tests before being allowed to go for my treatment about three hours later.

It seems that the blood pressure pills I have been taking may be the culprits. I had been taking them with my breakfast early in the morning but they were kicking in with a pressure drop a couple of hours later. I now take them at night. It was also discovered during the examinations in the Macmillan ward that I now have a heart murmur. I was told to see my GP about it, which I did the next day and I have now been referred for a scan on my ticker. Thanks to the Macmillan staff for taking such good care of me.

Swimmingly

In spite of being diagnosed with high blood pressure two weeks ago, I have just had a fairly decent ten days or more. The aches and pains that came with the hormone therapy have subsided to almost non-existent. My blood pressure has only gone down slightly though, so my medication has been increased.

I have enjoyed swimming recently and that has helped me get my muscles working again. Well, some of them. I am now wishing that I had gone swimming more often before becoming ill as I would benefit from being able to swim more. Sadly, for someone who used to be a scuba diving instructor, I am a shit swimmer. Also, I will have to stop going in the pool when I am on radiotherapy but will certainly get back to it at the earliest opportunity.

My radiotherapy treatment starts in less than a week and it is fair to say that I am a little apprehensive about it. However, in little more than a month, it will be over and done with. Just the side effects to contend with then. I am at the moment feeling better, both physically and mentally, than I have for some months. Things are going swimmingly.

Out of my depth

Instead of the gym
I now go for a swim
To try and keep up my strength.
Though my head says, "GO",
My body says, "NO",
As I barely manage a length.


Marked For Life

I’ve now had my planning scan in advance of receiving radiotherapy. I spent a few hours at the hospital. First, being briefed by one of the research team about what was going to happen regarding the scan and then filling in as many of the gaps in what I knew about what would happen going forward. It was totally about keeping me informed and feeling at ease with what was coming.

Next I was seen by one of the scanning team who took me through the procedure in more detail, explaining how I would have to drink water containg a dye so that they could determine if my bladder was sufficiently full and also that my rectum needed to be empty. No poo and no farty gas allowed.

I would have to be set up in a certain position and not move whilst being scanned. Provided all the criteria were met, I would then be marked with three dots which would be used to set me up in exactly the same position for the next twenty visits.

Well, the water containing the dye smelt of aniseed. It’s fair to say that the taste might be better described as anuseed. It was not very tasty. However, I drank the specified amount within the specified time and having had a bowel movement earlier, I was ready to go. Or not go.

As one might expect, they were meticulous in the set up but all was well and all the boxes were ticked and I now have three permanent dots on my lower body. Hardly noticeable really, so they don’t break my “no tattoo” rule.

After the scan I had another blood test for PSA. Perfectly straightforward. No bent needles or projectile bleeding this time. And then it was off to the Macmillan Centre for a coffee and a chat. I also booked myself a couple of massages. It was a good day and things seem to be moving forward now.

Pressure

A couple of days later, I had an assessment to see if I could go on a fitness course for people with long term illness or cancer. I failed. My blood pressure was too high. It had reached an all time high, possibly as another side effect of the hormone treatment.

The assessor said that he could not allow me to use the gym but I was at liberty to swim in the pool, should I wish to do so. It’s ok to drown, I suppose, but not fall off the treadmill. I was a bit disappointed but thought that swimming might be ok for the time being. I need to get active in some way. With that in mind, I took out a membership with a leisure centre nearer to home and received a substantial discount.

I saw my GP the next day regarding my blood pressure and am now on medication. Hopefully it is only short term. Nevertheless, in spite of the hot flushes I have been getting, I am feeling better than I have been recently.

Sad

On a sadder note, I am writing this after having just attended the funeral service of a friend. Someone that I have known since we were eleven years old. He had been very supportive of me despite having been diagnosed with cancer himself at the end of last year. A lovely man. RIP Alan.

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