Anniversary

It’s exactly a year ago today that I had my last radiotherapy. As relieved as I was at the time, my body was feeling badly broken from what had happened during much of the preceding six months. I set about rebuilding and trying to get as fit as I possibly could, encountering many obstacles along the way. But by Christmas, I was feeling quite good about myself and looking to put a terrible year behind me. Onward and upward.

Except.

I had been having problems swallowing and my throat was frequently quite sore and following an appointment with my GP I was referred for a gastroscopy. A procedure which involved having a camera shoved down my throat. Something I had been threatened with before when taking photographs on my travels.

The procedure came with two options, with or without sedation. I opted for without as I wanted to be able to drive to the hospital and back home again. The hospital staff were wonderful as I have come to expect and they made it as trauma free as possible. One nurse holding my hand throughout. I was told to let them know if it was too uncomfortable and they would pause and assess before continuing. Great.

Except.

After the camera was inserted, the nurse holding my hand asked if I was okay. “Argh argh arghh arragh”, I replied, which translated into, “it is hurting a lot”.

“Good” she replied, “well done”, as the camera was pushed deeper into my body. Oh well. I was distracted for a while as I watched on the monitor what was taking place in my oesophagus. Every so often a biopsy would be taken and there would be a flash of red as blood escaped. Fascinating. Then came a moment of major discomfort at which point I exclaimed, “argh argh arghhh arhghgh argh argh”. It is really hurting me now.

The nurse squeezed my hand and said, ” fine. You’re doing really well.”

Soon it was all over. The camera extracted and I was returned to an upright position. “How are you feeling?” asked the nurse as she let go of my hand.

“Argh argh argh argh arrraghh argh argh argahg argh”, I replied. It feels like the camera is still inside me.

“Good”, she said, “You have been very brave”.

The nurse endoscopist, typed up her report and then came to tell me what she had seen. It transpired that I have a condition called Barret’s oesophagitis, abnormal cells which could become cancerous. Everything else looked normal and I was told not to worry. Great.

Except.

About ten days later I received a letter saying that I needed to go to the General Hospital for a procedure called a Barium Swallow and that subsequently I would need to have another gastroscopy to remove the nasty cells in my oesophagus which the biopsies were showing as pre-cancerous.

To be continued.

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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.