How I am coping with terminal prostate cancer.

Looking back, I can see that there were warning signs long before it became apparent I was seriously ill. Around early-to-mid-2014 (I was 71) I had problems urinating, needing to go often, but then producing little result. It got to the stage where I would not travel on certain local trains because they had no lavatory facilities; I was unwilling to visit anywhere without a lavatory close by.

In late 2014 I began to get sciatic pains in the left hip and leg. I tried a local private osteopath. In the past, such treatment had proved effective for lower back pain, but the treatment was ineffective and the pains increased. Eventually, I was unable to lie in bed and slept fitfully in an armchair. However, I continued with the exercises, believing they would help until my wife demanded I stop, as they seemed to cause more pain, and insisted I go to my GP. I did and he gave me painkillers, which helped. At no time did I consider that these events were warning signs because I did not know that they were. The osteopath was puzzled that his ministrations were ineffective.

Investigating the symptoms

In March 2015 I began digging new garden beds in very heavy clay soil. This triggered serious and unbearable sciatic pains. I visited my GP in great distress: he gave me strong analgesics and morphine. This made life bearable and I could now sleep in my bed again, but I could do little strenuous work and needed a stick to walk more than a few yards. During this period, I felt low and depressed.

My GP arranged an X-ray and suggested a private chiropractor. I took his advice and made an appointment, but subsequent events overtook the appointment. My GP also sent me to a urologist. This took some weeks to organise and during this time I felt utterly wretched, tired from lack of sleep, fearful and apprehensive of what the future might hold.

On 26th March 2015, my wife was away for the day when I began to have acute and increasing abdominal pain. I telephoned my local surgery and explained my symptoms and they immediately arranged for an emergency ambulance (my first).

‘Always look on the bright side of life.’ – Monty Python 

I had to crawl to the front door to leave it unlocked for the ambulance crew. They were very professional. Within a very short time, I was given a shot of morphine and the pain was rapidly relieved, then off we went to A&E. The paramedic gave me the last shot of morphine before going in, since, once through the doors, I would no longer be in their care. I lay in a cubicle for hours and, despite my increasing distress, no one appeared to take any notice. Eventually, I made a fuss and a doctor fitted a catheter and drained out almost two litres of urine. That cured the immediate problem and I was able to function relatively normally, but clearly, there was an underlying problem to investigate.

Eventually, on 2nd April 2015, I had my first appointment at the Conquest Hospital urology department. I was told that the prostate was hard and further investigation was necessary. There followed MRI, CT and bone scans. The blood tests taken in A&E showed my PSA level was up to 13.9, whereas previously it had never been above 7, and I was started on tamsulosin; clearly the urine retention was due to the enlarged prostate, which in turn was responsible for the high PSA. At this time, there was no hint given that I might have cancer.

I normally had a physical check-up once a year with my GP and the PSA had always been classed as low. For some reason, however, this had been allowed to slip for the previous year or two. Consequently, any rise in PSA was not discovered until now. Another MRI scan of spine, lumbar and sacral regions followed in May and a week or so later I had to call out the emergency doctor, due to a urine infection and was put on antibiotics. Such infections are a common nuisance with indwelling catheters.

Although I felt physically very unwell and was in a good deal of pain much of the time – and had to resort to a stick as an aid to walking – my wife and I tried not to let it get in the way of living our lives, but at times this was difficult.

On 8th May I was scheduled to see a urologist at the Conquest, but when we arrived the consultant was not there. The catheter was removed before I discovered this and the resultant flow test was very low, but a new catheter was not fitted. I made a complaint to Patient Liaison Service, who investigated (there had been some confusion about rotas), but later the consultant called me from Eastbourne District General Hospital and asked me to see him. I was subsequently admitted there for observation for three days and had a fresh catheter fitted. My treatment there was excellent: once one is ‘in the system’, it seems to work very well.

My Diagnosis

I had another urology appointment at Eastbourne on 15th May 2015, when the diagnosis was given. My wife and I were shown into an interview room with the urologist and the urology nurse. This is when we first began to understand how serious things were. It was metastatic (bones and lymph nodes) prostate cancer with a Gleason score of 4+5, which meant that the cancer was very aggressive. This came as a great shock and my wife sat in stunned silence for some minutes. However, I found myself asking ‘How long?’ This question was avoided, and instead, I got a soothing assurance that people often lived for years with the disease. I was started immediately on androgen deprivation, Degarelix and steroids, from which the only side effects that bothered me were hot flushes. The care I received was professional, caring and compassionate, which helped us cope with the altered circumstances. I felt very unwell most days, due to tiredness and frequent urine infections. At the end of the month, one of my daughters came to visit for a couple of days and I was able to cook dinner, go out to lunch and walk along the seafront, despite pain and discomfort. Later, I had yet another MRI scan.

Undergoing treatment

On 28th May, I was admitted to Eastbourne DGH for a planned transurethral resection of the prostate (TURP) operation. Finally, the catheter was removed and I was discharged the same day. The operation was successful and it was a great relief to get rid of the catheter, which had become an enormous nuisance. However, the antibiotics I was given proved inadequate and once again the emergency doctor had to be called to prescribe antibiotics that were more powerful.

June began with regular four-weekly injections of Degarelix at the local surgery – a very large (40-ml) subcutaneous injection into the stomach, which was painful and caused discomfort for a few days – but the difference they made to my quality of life was dramatic. Although manual work was out of the question, I could do most of the things I had done previously. We went to Brighton to have lunch at a favourite restaurant to celebrate.

The Prognosis

The 23rd of June saw our first appointment with the oncologist, who gave the prognosis of three-to-five years with the caveat ‘if I was lucky’! However, the PSA level was down to 0.56. He also recommended radiotherapy and chemotherapy. In his words, ‘We will hit it with everything we’ve got’. So at the end of the month, I went to a planning meeting at the Royal Sussex Hospital in Brighton and shortly after started six weekly sessions of radiotherapy. There were some side effects – nausea occasionally and a general feeling of tiredness and debility – but mostly I managed to lead my life normally, although at a somewhat slower pace.

For the previous five years, I had been Secretary of Gauge O Guild, which is a sort of model railway club but also a limited company with a significant turnover. On 26th July I went to Telford for a board meeting accompanied by my wife for support. Although I could function reasonably well, I still needed help with things like getting dressed and had periods of feeling very tired.

In the first week of August, there was another Degarelix injection and the first of six sessions of radiotherapy. Later, I started attending the Pevensey Cancer Unit at Eastbourne DGH for the first of six monthly sessions of chemotherapy (Docetaxel). I lost all the hair on my body but the hair on my head turned curly, which I rather liked, but unfortunately, it went straight again once the treatment finished. Again, I felt little in the way of side effects aside from tiredness, some nausea and occasional diarrhoea.

I think I was able to deal with all the side effects because I was fit, had a good diet, was not overweight and was a non-smoker. Equally important is being positive in one’s attitude to the circumstances. I am well aware that ‘positive attitudes’ have no scientific basis in abating cancers. However, I do believe that being positive and optimistic enabled me to cope with this disease and, more importantly, the side effects of the treatments. I know for some people that may be difficult, but I think it’s an essential part of dealing with the disease. Equally important are a loving and supportive family and friends. One finds out rapidly who one’s real friends are.

Sharing the News

Because I had come to terms with my illness I had no problem in telling those who needed to know what was wrong, but they had difficulty in dealing with it and I found myself supporting them. Often friends did not know what to say and were naturally extremely sympathetic, which I sometimes found difficult, but I used black humour. When someone told me how sorry they were to hear the bad news, I would respond with ‘Not nearly as sorry as I was!’ After my final meeting with the urology nurse at Eastbourne, I was transferred to the oncology department. There was another CT scan for thorax, abdomen and pelvis with contrast and the monthly hormone injection, to which I did not look forward. However, it was clearly making a difference. As the treatment continued I felt increasingly better, could walk more easily and my use of painkillers reduced considerably.

In August 2015 I had another oncologist appointment with some good news: my monthly blood tests, necessary to track the progress of the chemo and hormone treatment, put my PSA down to 0.16 and alkaline phosphatase normal at 81. I still had some pains at times in my left side, but had plenty of painkillers to take when necessary.

On 4th September I went to Telford for three days, again accompanied by my wife. Each year the Guild puts on a two-day show and holds the AGM. As Secretary, I needed and wanted to be there, but it proved very tiring – even several days after we returned.

On 8th October my temperature suddenly went up to 38.3°C. The rule for the current medication was that a temperature over 38°C meant I had to contact the Cancer Unit, who called me in immediately for observation. After a number of tests, however, nothing was found and I went home the same day.

Shortly after, I started six, monthly, sessions of Docetaxel (a form of chemotherapy). There were some side effects, nausea and occasional diarrhoea for a few days, but no increase in pain levels. However, my toenails went black. The first couple of days after each infusion I usually felt rather low and tired.

 After the last chemo session, I had a chest X-ray to try to explain some of my upper back pains. The appointment with the oncologist later in the same month revealed that my PSA was down to 0.10. I had no further bone pain and so the steroid treatment I had been on since the chemo started was now tapered off. Another single dose of radiotherapy was prescribed for the upper back pain to dampen down the lesions across the shoulder blades.

Recovery and Travel

I had now reached a stage where it was not obvious to others that there was much wrong with me apart from my using a stick and shortness of breath, so in January 2016 we began to go out a lot more. We took lunches in Brighton, a day in London (a two-hour train journey each way) to visit the Churchill War Rooms and to the theatre in Brighton. In February we went to the Royal Opera House and also theatre visits in Brighton, interspersed with follow-up meetings with my oncologist. 

By now I felt much better and could get around fairly easily, although I was sometimes plagued by shortness of breath. In March 2016 I was well enough for us to visit the Canary Islands, which went well apart from trying to obtain travel insurance. After I answered the question about terminal illness, most insurance companies would not provide cover. Some did offer cover, but this was very expensive – around £2.5k-plus for a week, which was five times the cost of the holiday! Eventually, I found an insurer who would cover me if I had a serious accident or sudden illness on the understanding that anything caused by prostate cancer would not be covered. The insurance industry seems very rigid in its view of prostate cancer. Rarely is it likely to cause emergencies: it is a gradual disease that can be controlled.

My improvement continued and in May 2016 we took another week’s holiday – self-catering in Palermo, Sicily – and I coped well, despite the long walks involved in some of the excursions and the stairs up to the apartment.

Side Effects

I was able to continue working as Secretary of the Gauge O Guild - sometimes for a couple of days a week! In June 2016 I again went to a two-day Guild function alone as I felt I could manage much better, but by July I was beginning to have side effects from the monthly hormone injections. Within a few hours of the injection I would become extremely cold – shivery with a temperature – and experience nausea and vomiting. These symptoms passed after two-to-three hours and after a good night’s sleep I would feel better again.

In August 2016 came the next hormone injection. Two hours later I was very unwell, with similar symptoms to before. At the end of August, the next injection caused the same side effects within two hours and I was unwell for much longer and violently sick. My oncologist moved me onto Zoladex injections instead. Now this one I found really quite frightening – a needle that looked to me like a drainpipe, to punch a solid capsule subcutaneously in the stomach – and I hated it. Then in September came another appointment with my oncologist, who organized a repeat bone and CT scan due to the increasing pains in my shoulders.

On 8th October Bexhill Choral Society, of which I was a member of the bass section, gave its usual autumn concert and I was there singing with them. I also took over as Treasurer, so a completely new horizon opened up.

We had booked a holiday in Cyprus for mid-October 2016 but cancelled it because of uncertainty over the side effects of the Zoladex injections. I had a CT scan on the 13th and then we decided to rescue half the holiday and went off for a relaxing time in Cyprus. I could still get about, drive a car and explore, but I became tired very easily. We had rented a villa, so tended to go out in the mornings and return for relaxation in the afternoon.

Orchiectomy

On 25th October 2016, I went to see my oncologist again. We discussed radium therapy for worsening shoulder pains. At the beginning of November, I discussed with the urologist an orchiectomy in order to avoid the painful Zoladex injections (whose sole function was to stop the production of testosterone) and their side effects. That month I had more MRI scans and commenced the first of six radium 233 injections at the Royal Sussex Hospital in Brighton.

In early December 2016, I was at the Conquest fracture clinic to investigate pains in my shoulder: scans had indicated no apparent cancer lesions. It was a common over-growth of bone. Keyhole surgery was planned, but the consultant suggested we try a steroid injection first. So far, as of April 2018, it has caused no further trouble. At the end of the month, I went back to Eastbourne for the orchiectomy, which was successful, and I was in and out in the same day. Consequently, I could dispense with the hated hormone injections.

My oncologist called for another CT scan in January 2017 because of severe headaches. However, these turned out to be trigeminal neuralgia – nothing to do with the cancer at all – and I was prescribed yet another drug: gabapentin.

On 31st January 2017, I saw my oncologist again. I was no longer taking Zoladex and was feeling 100% better, with fewer hot flushes. I continued living my life as close to normal as possible, attending meetings related to my lifelong interest in model railways, and then on 8th February, I flew to Manila to do seven days’ work. For some 30 years, I have been a Director of Success Dynamics. However, the company was sold and moved to the Philippines. I had my first long-haul flight (of 13 hours), business class. Unfortunately, I caught a bug somewhere along the way and felt unwell for about a week after my return. When I recovered, life continued as before and I spent much time working for my previous employers, as Treasurer to the Bexhill Choral Society and building models in my well-equipped workshop at home.

By May 2017 worsening pain in my left shoulder and spine triggered another meeting with my oncologist. He sent me for yet more scans and discussed the pros and cons of starting Enzalutamide. In the meantime, the symptoms were relieved with painkillers. Later that month we left for a week in Taormina, Sicily, where I managed to negotiate the hilly town and some of Sicily’s major archaeological sites largely without the aid of a stick.

New Treatments

After we returned I had another bone scan and later another CT scan followed by my next appointment with my oncologist. The CT scan showed a progression of the bone disease, causing pain and pins and needles in the buttocks, left arm and hand. It was decided to start Enzalutamide at some future date – a drug which, if it can be tolerated, helps check the progress of cancer. Throughout this period we continued to eat out with friends in various places and to lunch and the theatre in Brighton.

On 16th June 2017, I went once again to see my oncologist, who sent me for another MRI scan for the worsening pain in my left leg: I now needed a walking stick again and was increasingly tired. At about this time I joined EXTREQOL, a study of the quality of life of prostate cancer patients. Despite increasing pain and debility, we went for lunch on the Bluebell Railway’s Golden Arrow – a most enjoyable day.

At another appointment with my oncologist on 15th August I told him I felt utterly wretched (4.5 on a scale of 5). He decided I should commence Enzulatamide tablets daily and monthly infusions of Zometa to help prevent bone calcium loss. The Community Palliative Care team were involved and I was put on the gold-standard framework and prescribed Oromorph on the basis that I would only use it when necessary.

Miracle Results

The Enzalutamide had almost miraculous results: within days I felt better and although unable to do any heavy work, could get about relatively easily with a stick. The Palliative Care Team visited and we discussed the future – making a no-resuscitation order in the event of something like a stroke – and I was given advice about claiming attendance allowance. Because I was increasingly tired and unable to do any heavy work, we employed a gardener and a cleaner and I was taking taxis to appointments. However, I was well enough to visit my grandchildren in Chesterfield in mid-August and stayed for a couple days in a hotel. They live more than a four-hour train journey away, but I managed it on my own despite the tiredness.

Life returned to a sort of normality. In September I went to Telford for three days as I have been doing for 20 years and later that month we visited my relatives in Birmingham for a few days, treating ourselves to dinner in a two-star Michelin restaurant.

Bexhill Choral Society’s autumn concert was held on 7th October 2017. I sang in that and generally enjoyed life. At a meeting with my oncologist later that month, my PSA level was down to 0.45 – its lowest for 18 months. I was feeling very well and could at times dispense with my walking stick, although it was – and still is – difficult to get up in the morning.

Looking Ahead

On 26th January 2018, I reported good progress to my oncologist, with no significant side effects from Enzalutamide. Unfortunately, in April 2018 I gave up singing since the breathlessness that goes with my condition is now too bad to be able to sing properly. A great disappointment, but it was great fun while it lasted. I shall continue to act as Treasurer, build models and write them up on my website, cook, go out for lunch with friends and lead as normal a life as I can for as long as I can.

At one of my oncology appointments I saw a young registrar and asked to know what sort of death I might expect since no one seemed eager to talk about the subject. The young man was somewhat taken aback but rose admirably to the occasion. It seems it will be a steady decline before fading away. I have sorted out my affairs, made a will and have organised a celebration of my life to be held about three months after my death. This will be overseen by two good friends and my wife.

Since the diagnoses, my wife and I have adapted and enjoyed the small pleasures in life such as morning coffee and afternoon tea in the garden, walking along the seafront, having lunches out, going to the opera and theatre, and planning holidays. Sometimes we discuss cancer, but mostly we simply ignore it. As a friend pointed out, at least I have some idea of when I am likely to die so it will not be a shock to my family and friends. I also continue to enjoy my railway modelling, being Treasurer of the Choral Society and my much-reduced vegetable bed.

My wife and I are unbelievably sad to leave one another after nearly 40 years together. We simply cannot even imagine it, so we try to keep this sadness contained at the back of our minds and enjoy the time left. We remember all the joy and fun we have had and continue to have, counting each day as another to enjoy, savour and remember. I continue to enjoy my wine with my wife looking over my shoulder asking ‘Are you sure that is only your second glass?!’

A Day in the Life

So what is a typical day like? Around 7:30 my wife will wake me and then about half an hour later come to wake me again with a cup of hot water. Some days I will get up and drink it and others she will wake me again to say it has gone cold. Getting up is difficult, though I am usually up by 8:30, but on bad days it may be as late as 9. Then breakfast of homemade yoghurt, strong coffee and a banana. Usually, by this time I am beginning to get to grips with the coming day: the more I do, the easier it gets. Unless we are going out somewhere I will go to my office and fire up the computer to check e-mails, then go and make an espresso for me and a flat white for my wife. If the weather is nice enough, we will sit in the garden to drink it. By then I am usually feeling better and start work in the office until lunchtime unless it is a cooking day when I cook many meals to go in the freezer.

Lunch is usually soup and quickly over, and I can get back to my workshop perhaps and do some modelling until 3 p.m. when we have a cup of tea, always in the garden if the weather is good, and admire our 10 years’ handiwork. Then it’s back to the office.

At around 5pm I will start to get dinner ready, open a bottle of wine and have a small glass while I work. After dinner I usually read while my wife clears up and then we often watch something we have recorded on TV or a good film.

By 9:30pm I am starting to feel tired again and so am usually in bed by 10. On a good night I sleep for eight to 10 hours. Of course, things are different when we have somewhere to go or something special to do and the routine changes. However, I am usually in bed by 10.

Reflections

I have received excellent care from my local hospital’s oncology and urology departments, and also from my GP, but only after the diagnosis was made and I was ‘in the system’. I have received numerous treatments: hormone therapy, radiotherapy, chemotherapy and radium therapy. I have been taken to A&E, twice called out emergency doctors, and prescribed various antibiotics and numerous painkillers including morphine. Since August 2017 I have been stabilised with Enzalutamide and am constantly grateful that such treatments are available. My PSA level has doubled to 0.7 over the last four months and it is expected to continue doubling every three to four months. When it reaches 4 or more, other treatments are available.

Prostate cancer is the most common killer of men, but the problem is getting into the NHS system before it is too late. Because there is no screening service like there is for breast cancer, it is often too late – as in my case, when the cancer had spread long before it was discovered. Despite complaining of relevant symptoms, I was sent to see a chiropractor.

I think I was able to deal with all the side effects because I was fit, had a good diet, was not overweight and was a non-smoker. Equally important is being positive in one’s attitude to the circumstances. I am well aware that ‘positive attitudes’ have no scientific basis in abating cancers. However, I do believe that being positive and optimistic enabled me to cope with this disease and, more importantly, the side effects of the treatments. I know for some people that may be difficult, but I think it’s an essential part of dealing with the disease. Equally important are a loving and supportive family and friends. One finds out rapidly who one’s real friends are. 

There is not nearly enough publicity about prostate cancer. Collection boxes and pink ribbons for breast cancer are almost continuously available in stores, but it is very rare to see prostate cancer awareness badges. I am frequently asked about the badges that adorn every coat I possess by people who do not know what they mean.

I leave this message for men everywhere: have regular physical checks with your GP. Do not rely on a PSA alone, be aware of the symptoms and do not be afraid to discuss it with your GP. Prostate cancer is curable if caught in time. However, if you finish in my position then you should know roughly when you might shuffle off this mortal coil. Do get your affairs in order. Write a will and set up an enduring power of attorney to make life easier for those you leave behind.

I have started the fourth year of the five my doctors gave me. My affairs are in order, my will is made and a celebration of my life has been organised. When I retired I said, only half-jokingly, it was because I didn’t have time to go to work any more. Well, I cannot die yet as I still have a long bucket list to achieve and projects to work on. It makes every day count and means that I enjoy them, despite the cancer.

Raymond Walley

Bexhill, May 2018