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Hard to swallow

Following the discovery of pre-cancerous cells in my oesophagus, two appointments were made for me at Southampton General Hospital.

The first was for a barium swallow. This would show whether there was a pouch or some other form of obstruction in the upper part of my oesophagus and seemed a fairly simple and straightforward procedure. As always, I was early for my appointment and was taken in almost immediately by a young nurse or clinician. I can’t remember exactly how she described herself. She took me into the room where the procedure was take place and introduced me to the two young men who were already inside.

“When are the grown-ups coming?” I asked. Rude I know but I just blurted it out. They were all so young and looked to me like they should be on work experience schemes. But no, these were fully trained and experienced and fortunately, good humoured.

The barium swallow involved me eating a coated “marshmallow”. Simple you might think. Well, I have never been a fan of marshmallows and this one I had to chew and then swallow at precise moments when instructed to do so, for the purpose of imaging. The coating on the marshmallow was, I believe, obtained by taking it outside, dropping it on the ground and collecting dirt and grit and whatever else might cling to it. It felt like I was chewing soggy sandpaper.

The imaging was to take place while I balanced on a platform which was rotated while I was told to adopt various poses and at intervals given the instruction, “swallow”. Easier said than done. The whole point of me being there was because I had difficulty swallowing. The irony of the fact that I was being asked to swallow the least edible item, possibly, of my entire life, was not lost on me. I began to chuckle, which made swallowing even more difficult. Some banter was exchanged between me and the guy operating the equipment. I had to remind him that he should concentrate on his job and leave the jokes to me.

Eventually, I was able to swallow all of the concrete flavoured marshmallow and the ordeal was over. Soon after, I received the news that nothing was revealed by the procedure. Sometimes nothing is good.

Shortly afterwards I was given an appointment for another Gastroscopy during which the pre-cancerous cells would be removed. I would have to be sedated for this one, which meant I would be unable to drive home and would need to be looked after for the night.

My daughter Melanie volunteered but in order to save her from hanging around, potentially for hours, I said I would make my own way in and she could collect me later. Well, although it was before lockdown, I was already taking precautions to avoid the coronavirus. I had stopped going to the gym and was doing all of my shopping online. except for one trip to Portsmouth to buy some new running shoes. As difficult as I find it these days to run on hard surfaces, I have to ensure I get as much exercise as possible. I digress. I broke my new running shoes in by walking the 8 kilometres from home to the General Hospital. I did not want to risk getting Covid-19 through using buses or taxis.

On arrival at the hospital I was taken through various checks and was delighted to find out that the oximeter showed 100% take up. It’s worth doing the exercises.

The procedure went by in a blur although I was amazed by the amount of people involved. Although I was not so aware of the scope this time during the procedure, I certainly was afterwards. I had an extremely painful and sore throat and swallowing was even more difficult. Liquids only for a couple of days, although it soon settled down.

It was not long before I got the results of the EMR as it is called. They had removed 90% of the cells but wanted me back soon to remove the remainder, as the cell characteristics were changing. Unfortunately, lockdown was upon us before it could be scheduled and I have been waiting ever since.

Having received two letters advising me of delays, after the second, I phoned the hospital to discuss my situation and when I mentioned my symptoms, I was told to call my GP and ask for an urgent referral for a colonoscopy to investigate for possible colorectal cancer. My GP duly obliged with the referral and I am going in to have both procedures carried out on Monday July 6th. Please don’t let it be both ends at the same time. I had to have a covid-19 test today as I will be admitted for an overnight stay at the hospital.

It’s hard work at times trying to manage one’s health, particularly during a pandemic. Stay Safe!!

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.

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.

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