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Prostate Cancer Information Page


(This way to my 2018 Radiotherapy blog)

(This way to my 2023 Radiotherapy blog)

Ian Edmundson

This means me telling the whole story again.
Here we go, then......

My own personal past experience of cancer was through my relatives getting it. I remember that my Mum had been admitted to hospital some years before, having coughed up a little blood and her GP straightaway got her admitted to hospital. I was on a Union course from work and got the call to go to the hospital, as she had been admitted. They didn’t tell me exactly what was amiss at that point, or even how serious it was.

I got a phone call at work after a few days, regarding the possibility of her being admitted to a hospice, as that was what happened "to terminally ill people". I said that this was the first that I had heard about her being terminally ill and the person at the other end of the phone audilbly gulped, apologised and got off the phone as fast as they possibly could. I left work immediately and went straight to the hospital ward. I wanted some answers.

It took two weeks for her to die and I was utterly bewildered by the loss. She was given various things to keep her comfortable, as she was getting confused. I was not consulted about what was being done, although they may have mentioned ‘keeping her comfortable’ without saying what that entailed, as I was a bit of a wreck about it, having lost my first wife, Julie, to a heart attack a couple of years before.

I was called in the middle of the night by the hospital, saying I needed to get there, quickly. When I got there, they had her bed surrounded by curtains and a coloured bulb was on. She looked peaceful and felt ice cold. I kissed her forehead and said my goodbyes to her.

The funeral was a fog, except for the fact that I quite remember my Dad unexpectedly turning up.

Lynda and I went through her own father’s struggle with cancer and attended the hospital in Bury frequently. Losing her Dad was utterly bewildering to us both. He was such a lovely gentle man, devoted to Lynda. Her Mum was admitted to Fairfield hospital, a few years later and her passing was a slow and painful one. Lynda went to the hospital frequently and her employers were excellent about juggling her shifts to allow her to be there. Lynda was utterly devoted to her Mum and Dad and losing them both was the most painful thing in her life, although she would throw childbirth into the mix if you were to ask.

Years later, after many years of not being in touch, my Dad dropped a note through my front door, saying life was too short and that we should talk. He’d like to meet with me. I had gone a long time without him and personally felt no need to meet up with him, but decided to do it for the sake of my children. My daughter wanted it. My son wasn’t too bothered. He knew that we had parted on bad terms in the past and he had grown up with no contact. He didn’t feel he needed contact.

After a number of months, my Dad broke it to me, that he was going to be treated for Osophagal cancer. He also had COPD and asbestosis. He went back and forth to The Christie hopsital in Manchester for treatment and it made him weary. He didn’t want me to take him, though I said I would get some time off to do it. He used patient transport, which he both praised and then complained about in the next breath.

He was in hospital for a short time after being admitted after a fall at home and my stepmother didn’t even bother to tell me that he was in there. I only found out what was going on after calling down to see him with a birthday present. Then I was merely used as transport to give her and her daughter lifts to and from the hospital and my bosses were very good about the time off, for hospital visits in the afternoons, as it was clear he wasn’t going to come home. There were a couple of false alarms, as he deteriorated and we were there all day with him. In the end, we were called back a short while after an evening visit and we stayed with him until he left us, during the night. His breathing got more and more shallow and he took longer pauses between breaths. He passed away with me holding his hand. I walked home alone in the pitch darkness and tried to make some sense of it all.

A couple of years later. My turn.
After a simple blood test in February 2016 and then a biopsy in March 2016, I was diagnosed as having prostate cancer.

My actual symptoms that led to me getting checked out?
I drank coffee all day and then went off to the loo a hell of a lot. Lynda noticed this when I didn’t. I just thought there was nothing wrong. It was just that I drank coffee and then I went to the bathroom. Simples. Lynda had nagged me for quite a while, after I left work, to go and get myself checked out. I am very grateful that she did so (several times) before I actually got on with it.

It’s Lynda that I have to thank for me being where I am now, instead of where I could have been if I hadn’t gone for that blood test.

When I gave in to pressure, the blood test was really nothing to worry about. I didn’t really think about what it could mean. I just went and had some blood taken and that would probably be the end of it. Guys tend to soldier on and put up with a bit of something bothering them, until either a part falls off, or they die. I was sent with a flea in my ear to have some blood taken. I am a lot luckier than some.

I didn’t worry at all  about what the result was. They rang me and told me they wanted me to come in to see a GP and I thought it was just to tell me to go away for a year. Cancer happens to other people.

The very nice lady GP I saw said my PSA level was quite elevated and that she wanted to check my prostate gland. This meant putting her gloved finger in the back way and having a quick root around. I went in the back room with her, lay on my side with my knees under my chin and then I had my first prostate exam. It was quick and painless, though slightly embarrassing and she said she couldn’t feel that anything was amiss. In an attempt at humour, I asked her if this meant that we were engaged. We both laughed and then she then referred me to the Urology Department at the hospital. The result of the blood test was a concern.

This involved me initially seeing another doctor at the Bolton One centre, who proceeded to do a further finger exam, which I did not like at all, but he was gentle about it. I imagine it was not the highlight of his day either. This doctor told me about the whole process related to dealing with prostate cancer.

How did I feel at this time?

I guess I was blanking it out a lot. An elevated PSA can be down to anything. My PSA reading was 19 – really elevated. They would have been happy with 4.5 as an upper limit. I decided not to worry until I had something to worry about.

My PSA level was 19, It could have been a lot worse. When you talk to the medical people, they talk about readings of 10,000.

The process continued with a visit to Urology where I had another finger exam by a male doctor, who was not at all gentle. This was followed by a biopsy.

The biopsy procedure was pretty awful - the worst part of my whole experience. The prostate gland is not an easy body part to get to. The doctor produced an implement the size of a stage microphone with a needle sticking out of the top of it and 12 horrifying looking snipping parts. I again adopted the knees under the chin position while this thing was wedged roughly up the back way. The needle was supposed to anaesthetise the area, so I would not feel anything. It went through the rear wall of my bowel and the needle did not numb anything at all. I screamed at each of the dozen snips and the doctor hissed at me to keep still, or I would really hurt myself.

Hurt myself?
I limped home feeling totally violated and in an improper amount of pain.

The next day, I started feeling a bit feverish and went to bed for an hour. Fully clothed and with a polo neck jumper on, under a thick duvet. I was shivering uncontrollably and starting to gibber a bit. Our lovely tabby Cleo was visibly alarmed and pawed at me and even went downstairs to get Lynda. She could tell how unwell I was. Eventually, Lynda came upstairs and I said I needed to go to hospital. Lynda was unable to drive at that time, because of treatment for a heart condition. I was far too unwell to get behind the wheel. We rang for an ambulance and the people who give ambulances out did their level best not to set me up with one.

They left me to die.

Soon I would be being driven by Lynda, with me vomiting out of the car window, to A&E at the same hospital with a bad case of sepsis (blood poisoning), which, as we all know, kills people if it is not managed swiftly and properly and I would be admitted to hospital for the next week, to be fed some very strong antibiotics. I was spaced out, exhausted and really uncomfortable during this period. At the end of the week, I was quite weak, but just wanted to go home.

Shortly after being discharged, I had a further appointment at Urology to discuss the results of the biopsy. Lynda came with me.
I was hoping it would be prostatitis, which was easily curable, but it wasn’t.

Once they had sat me down, I was handed a couple of leaflets about dealing with prostate cancer and my head just swam. I had to bite the inside of my cheek to be able to take in what was said to me.

My prostate biopsy showed cancer in six of the twelve samples taken and some of the samples showed higher risk cancer.

As you can probably imagine, it was quite frightening and dismaying to be told I actually had prostate cancer. That is a moment I will never forget. The cancer showed up as being 'low risk' on one side and 'medium to high risk' on the other. As I sat there numb, we went through the options in front of me (hormone treatment and then radiotherapy or surgery) and it was decided pretty much on the spot to refer me to the Christie in Manchester for surgery although I did see radiology specialists a couple of days later). 'Get all of the information you can', I thought.

The two main options for dealing with it – hormone treatment and radiotherapy and also surgery were carefully explained to me. I looked at Lynda and said I wanted surgery. Get it out of me. It’s growing in me. It shouldn’t be there. It will kill me. Get it out of me.

The consultants would have a case conference later in the week, to discuss what I needed to have done and I would be able to see people to talk about my options.

We went home and my head was totally in bits. We were paying for my daughter to get married in August that year and I wanted to be there to see it. I slept badly and decided that I had to let my children know what was going on. I went round to see my daughter first and told her the story so far and tried to make everything sound as positive as possible. I didn’t totally believe it myself, so how was I going to convince her that all would be well?

We went round and I just told her the story so far and said I was confident that surgery would clear it up. Once the prostate gland was gone, my problems would be over. You can’t have prostate cancer with no prostate gland. She was anxious, but I reassured her the best I could.

As he was working away, I had to tell Paul over the phone, which I absolutely hated, but I put the most positive spin I could on it when talking to him. He was quiet and I could tell that he was really upset.

My stepdaughter Susan, on the other hand, while she was possibly remotely concerned, was excellent at radiating an atmosphere of confidence that things would be alright.

I went to sleep thinking about it and woke up thinking about it for days.

I saw the radiotherapy consultant on the Churchill Unit, which is devoted to cancer treatment. He told me that the hormone treatment and radiotherapy option had a chance of success, but if it was unsuccessful, there would be no recourse to surgery.

I saw an expert at Bolton One to discuss surgery and confirmed to myself that the surgery option was the only way forward. Then I let Urology know what my choice was.

I was referred to The Christie in Manchester. What they don’t know about cancer… well, it is a mystery that I hope they solve one day.

At my pre-op appointment at the Christie, I was given an alarmingly long list of what could happen to me as a result of the operation. I got this list from my surgeon.

Death on operating table
Deep vein thrombosis
Heart attack
Complications from anaesthetic
Loss of bladder control at various possible degrees
Etc etc

I felt rather pale and I am sure that I looked rather pale, too. My over-riding concern was that he got the cancer out of me. I couldn’t back out. Having been told exactly what the operation consisted of, and what happened when the robots peeked around inside me, during several hours of my being out for the count, I was mildly terrified. This information was given to me on a Wednesday and he asked me how I felt about having the operation on Monday morning, as a slot was available. I tried to look cheerful and so I said “Well, I’m not doing anything else…”

I had to tell my band that they would need a deputy again at short notice and that I could be out of action for three months or so. They got the same guy in who had covered for me before, when the sepsis had knocked me for six and I had been hospitalised. They were very good about it, as they knew I had no option but to do this. It was a matter of life or death, I suppose.

My jam night band hastily found a bassist to cover for me and the show went on.

I told my children what was now happening and tried to be as positive about it as I could. I didn’t tell anyone, but immediate family and a couple of close friends what was happening, or what was wrong with me, as I didn’t want the information to be out there.

The band played on Friday and Saturday and the last gig was at the Station in Ilkley, a gig that was normally brightened up by a young lady who would always dance in front of the band and then briefly expose her rather nice chest. I generally half-watched our drummer’s face when she did this, as he struggled to keep a beat and his son, on guitar didn’t know where to look.

On the long drive home from the gig, I got my head together and tried to come to terms with what I had coming up. It was an interesting drive and I have to admit I was scared of the idea of every single complication. On the other hand, I could come out of it not noticing any difference.

The Sunday jam went ahead with the deputy bassist in place. I had a nice meal with Lynda and went to bed early, as I had to be in south Manchester at the Christie for admission at 7am.

I can’t remember how well I slept that night, but on the morning of April 25th 2016, I was a nervous wreck. I wanted to be anywhere but heading for The Christie in Withington, Manchester. The roads were nice and clear when we set off at 6am and I was there very early, with plenty of time to spare. Lynda dropped me off near the entrance to the multi-storey car park and I trudged miserably down through the long corridors across the hospital, to the area where I had to wait to be admitted. I sat in the café, which wasn’t open yet and I just felt sick.

When the admissions department opened, there were just two of us sat there, for the early shift. The other chap went first and I sat around miserably, wondering what time the buses were. I didn’t have to wait too long before I was given a pillow and a hospital gown, which my backside hung out of, and was told to pop into a room and get changed.

At this point, all I really wanted to do was make a run for it. But I would just have to come back and people would be annoyed that I had messed their schedules up. My mind raced. A porter sat with me while I waited to go to the operating theatre. I asked him how many people made a run for it and he said not many. If it was not for him keeping me calm while sitting there, I might have bolted, hospital gown with an exposed bum or not, down the road towards Manchester.

I was called into the Anaesthetists side room, next to the operating theatre. I miserably got on the bed and admitted I was scared out of my wits. He made small talk and suddenly said “Right, let’s do this”. No countdown. I was gone.

I woke up on the ward and I was lying totally flat. My throat felt like I had been strangled and I was having problems swallowing. I wanted to get up. I put my arm in the air and waved to a nurse. I croaked that I needed to sit up, please, as I couldn’t swallow.

The bed was raised slowly and all of my middle insides appeared to suddenly move a few inches south. I felt like a sliding block puzzle. I never want to feel anything like that again.

The nurse checked that I was alright to have water and I took a few careful sips. Anaesthetists generally leave me with a sore throat after I have been put under.

I took a look at what was inside my pyjamas. I had 5 large plasters on my belly, which had been shaved, plus a tube coming out of a hole on my left side, above my hip, which went into a bag that was hanging down off the bed. I also had a catheter in. That also went down to a bag hanging down by the side of the bed. I had a number of other things stuck to me and a canulla that had to stay in place for a while. I hate those. I always dread them catching on something and breaking, or tearing my skin.

I didn’t get out of bed that day.

After surgery

That night, my throat was so sore and I had so much difficulty swallowing that I had something approaching a panic attack. I ended up being taken for an X-ray and being given a rocket ice lolly to soothe my throat. I was gobsmacked that they had ice lollies on a hospital ward, but this is The Christie, after all, and they seem to have everything.

The prostate surgery usually means that at worst you will stay in overnight. I had the complication that the bag attached to the drain tube coming out of my side kept filling up quickly. This meant that when they severed and reattached my urethra (the tube which leads from your bladder to the outside world), they had not got it totally waterproof. Urine was leaking into my prostate cavity and without the tube, it would have killed me. Levels were monitored and whenever I went for a wash and to empty both bags, nurses had to measure my outputs carefully.

Life on the ward consisted mainly of sleeping too much for my liking, watching out for meals, going to the toilet and filling cardboard hats with whatever liquid and writing your name on those hats. I didn’t talk much to the five other men on the ward, except to pass newspapers around between us. They were all fairly quiet and were concentrating on their own recovery. The chap to my right was a rather snooty piece of work and he took one look at my long hair and had the curtain pulled between us. This cut out some of the natural sunlight to my bed and I was slightly miffed. Judging by the number of tubes and bags hanging off him, he was in a quite serious state and had probably had something quite big removed. I left him well alone. His family visited quite a lot and they seemed really concerned about him. They pretty much ignored the other patients, only speaking to me when I passed a spare chair from next to my bed, as they needed one. My visitors didn't go round the ward exchanging pleasantries either.

Once I was able to walk fairly comfortably again, I made it my business to head for the day room, where our meals were served, and to watch some TV. There were some women from the other end of the ward in the day room and they were happy enough to chat.

The odd visitor was more than welcome, as I was bored rigid. Lynda brought Susan at one point and on their drive home, the journey took three hours once they hit the M60. Outside of peak time, I can be home from The Christie and have a coffee made in 30 minutes. Lynda did well to cope on that trip, as, after her sad hospital experiences with her parents, she is almost completely phobic about hospitals and wards. Rachel also came along to see me and I think she was enormously relieved that everything seemed to have gone well. I had to talk to Paul over the phone, as he was working down in Weymouth for most of the year. I think he was also quite relieved to hear from me.

My occasional bandmate and good friend Kee went all the way from Bolton to Withington on the bus to visit me, which was hugely appreciated, and we went and sat in the large conservatory in the middle of the hospital, where I went for walks and sat around trying to get my head together, many times. It was lovely of him to make the trek.

Every morning, the surgeons and consultants would do rounds at about 10am. If the Head of Department was there, they would swarm around after him, carefully telling him what was wrong with various people. I was of particular interest because of the complications with my leaky urethra. They would look at my wounds, while nurses changed the dressings, read the log of how much urine I had passed naturally and check what the drain was doing with great enthusiasm. They entusuastically asked about how my bowels were doing.

They were not doing anything. They had shut down completely.

Apparently, that’s quite normal. The shock of the operation has sent my bowel to sleep but some  function would come back in time. I had visions of me bloating up like a balloon and being in a lot of pain, but I didn’t. I was given laxatives to help and nothing happened. I knew that whatever went in would find its way out, because gravity works like that and your body doesn’t hang on to waste.

As the days went by, it became a major preoccupation for me.

Because the complications with my surgery meant I was staying in hospital much longer than normal, I begged until I got pass-outs for two weekends to stop me going insane at having to stay on the ward for observation at the Christie. I couldn’t really do much, but at least I was at home. I could measure the outputs and write them down and be back on the ward on the Monday morning. When I was packing various things up to go back first thing on the Monday morning, our Tabby Cleo tried sneaking along with me by getting in one of the bags. That got her the nickname 'Nurse Cleo', which has stuck. She is never far from me and follows me around.

Nurse Cleo.

In hospital, I had lots of time to think about things. That’s a good thing and also a bad thing.

I had time to worry about my long-term health, because although my surgeon gave me the impression that the surgery could get rid of the cancer completely, though he wouldn’t guarantee that 100%. We talked about what the operation had entailed and what side effects were likely. I took the deal when I signed the consent form for the operation. I can live with the side effects.

I thought about my band. It wasn’t the happiest band I’d ever been in. We worked a lot, but there was an amount of friction between all three members and I was beginning to dread going out to gigs. At least I had some time off.

On one of the weekends at home, our beautiful black cat Snowy reappeared on a neighbour’s drive, after having been missing for a couple of days. We had fostered him after he had been rescued from where he had been seen living in a hedge in the middle of a dual carriageway by a friend. He was what is known as a ‘failed foster’ as he just lived with us instead of being found a new home. He had possibly been clipped by a car at some point, as he appeared to have a little discomfort when walking sometimes. He was a very vocal little chap and had a lot of personality.

I brought Snowy home, as he seemed to be unwell and unable to walk much by himself, Lynda nursed him carefully, but we lost him during the night and I had to take him to a local vet. That was a pretty bad weekend.

Eventually, after a few more days, things started happening on the loo front and there was some quiet celebration among the doctors and nurses, as my bowel had been shut down for quite a long time.

Eventually they let me go home. I still had the drain in and a bag hanging around inside my clothes. I also had the catheter in place. The weekend after I was released I went to a guitar show and while I was there, I met up with a couple of mates. They hadn’t seen me for a while and were quite taken aback to see the tubes about my person.

The drain slowed down from the 200ml per day I was putting out, to a tiny daily amount, so they whipped the tube out, considering the tiny amount of remaining leakage not to be much of a hazard, as the body would absorb that until the leak was 100% healed. A week later, I went back to see about the catheter coming out. I was dreading that coming out, as I imagined it would be painful. It came out really easily. I was given an amount of water to drink and then I had to go to the loo and measure whatever came out to see that I was passing water properly.

They also issued me with a pad to put in my underpants, as I was going to leak until I regained control of the valve in my urethra. I passed the test and they didn’t put a catheter back in. I was totally dismayed with how little control I had with holding pee in. I had visions of not going out of the house ever again. I dismally bought some packs of Tena pads and some padded underpants that looked like nappies. Fortunately, this problem cleared up quite quickly.

I was told that I would be summoned back to The Christie for a review in three months.

I pottered around the house and went out very little. Going anywhere at all was a bit of an adventure and I felt very fragile. I was totally overwhelmed when a get well card came from two friends in America, Kim and Patricia. It was a Rock and Roll Hall of Fame card  - signed by the members of my all-time favourite band, Cheap Trick, on the very day of their totally deserved and long-overdue induction to the Rock And Roll Hall Of Fame. I just sat down and cried. How thoughtful. On their 2017 tour, I was lucky enough to meet up with the band at their Manchester Academy show and they all remembered signing the card and we talked briefly about how I was doing.

I went out to see my band and their stand-in bassist at a gig in Horwich. I only stayed for the first half. It was an odd experience watching them play with someone else on bass. I noticed everything that was different and I didn’t really enjoy it very much and so I made my excuses and left at half time. I wasn't missing them at all. I had moved away from them mentally and had other plans for the future.

I went to the pub in Atherton where I hosted the Sunday jam night, to watch another mate’s band playing. That was far more enjoyable and that helped me make up my mind that I should concentrate on getting the jam night band up to speed and making that my full-time band, playing the music I really wanted to play. I made up my mind that I would be giving in my notice to the band I normally played with, later in the year. I knew the bassist they were playing with would want the job, if they were still on their best behaviour with him, so I brought it up with the jam night guys and they were more than happy to fill any gaps I had in my diary and to start full-time as a band in the New Year.

When I went back to working with the band, I had to be careful with lifting for a while, but apart from that I was good to go after about six weeks or so. I said I would like to restart at a gig in Burnley, but they asked for the stand-in to do that, as his family would be coming to it. Even before they said that, I knew exactly which way my future in the band would go, and agreed to starting back with them later on. They had ceased to be my priority anymore and I was fairly sure then that they were hoping to replace me. I couldn't have cared much less to be honest. I was a bit loath to leave the house.

My first quarterly review was at The Christie and I learned that once my prostate was examined outside the body, they had seen what terrible shape it was in. I think the word ‘fried’ was used. There was a discussion about how I was doing with various things and about things that could be done for me. I had some blood taken to be sent off for analysis and was told the results would be sent to me in the post.

When my first letter from The Christie arrived, I hardly dared to open it. It was an enormous moment for me. I had tried to shut the whole cancer thing out of my mind, with varying degrees of success and had some awfully scary dark moments, worrying about my future health.

The result was that there was no detectable cancer. They would see me again in three months.
I framed the letter and it went on my studio wall.

By the time of my next review, I had already parted with the band. Things that bugged me about playing with them had got intolerable for me and it all blew up at a gig we did, after I had not slept the night before. I was in bad shape since the operation, tired all the time and my sleep patterns were totally out of whack. I turned up at gigs feeling ill and was in no position, or real condition to cope with what went on at the venues.

While I was relieved to be out of the band that I was so unhappy with, I was a bit in shock at it all going south like it had. I started panicking about money a little. I had left full time work with the intention of band earnings keeping me afloat, without the need to go into our savings. The new band had nothing in the diary. My nerves were in tatters. I was unwell, stressed and tired out.

We went on a few days break to the Cotwolds with friends and I gradually pulled myself together. I tried to relax and have a good time and to work on feeling better. I put the upset and angst about the old band behind me and I just decided the new band would pick up work over time. I then started to worry about the fact that I was suddenly the lead singer, as well as playing bass. I worried myself sick about it. I worried to the point where I was talking myself out of doing it. I was really still not in good shape at this point. I was often exhausted and everything I had been through had left me battered.

The new band agreed on a good list of songs for me to sing and we worked our way through them at the next jam night and I slowly started to build my confidence up. I didn’t have long to do it, though, as the phone started ringing with bookings for the new band, almost straight away. We had the weekend off when I went to the Cotswolds, then we were suddenly out every weekend. Local gigs were handed back to me by my old band, as it was pretty pointless them even walking in to play at my local venues. We went out and I felt a lot better, the more we did.

My second review came back clear again, like the first. I agreed to be transferred for my reviews to the Urology Department at Bolton.

I was offered the option of trial radiotherapy by The Christie and went to an appointment at The Churchill Unit at Bolton to discuss it. I decided that while I was getting clear readings, there was no great need to batter my body with radiotherapy. The consultant happily agreed, but if I changed my mind, all I had to do was ring. Interestingly, I was told for the first time that my seminal vesicles (which were removed, as is routine in a prostatectomy) were cancerous.

I attended my daughter’s wedding in August 2016 and it was just a truly fantastic day. I felt a bit ill, but did my best not to show it. I was tired out and I think it was just adrenalin that carried me through the day. I walked her down the aisle and performed the father role with a great deal of enjoyment and pride. The evening function was really enjoyable and the Farnworth and Great Lever golf club was a lovely venue.

Proud father, lovely daughter

I went for my third review at Bolton and was completely unimpressed. Instead of seeing a consultant, I was passed off to some member of his staff who had no idea why I was there and merely tried to have a pleasant chat with me. She actually told me that I would find out more when I went to my next quarterly review at The Christie. My appointment that day was so late, that I couldn’t have my blood taken for the PSA test, so I had to go to my GP and they sent it off for the Urology department to look at.

I then had to chase the result. No letter came. I rang my consultant’s secretary, who listened to my misgivings about the appointment I had attended, wouldn’t tell me anything about the results from my blood test, even though she had my notes in her hand and promised a letter would be sent and I should have it in seven days.

After ten days, I rang again and told the secretary the story so far. She still didn’t sound too interested, so I threw in my little hand grenade: “I would like to be referred back to The Christie to be dealt with by them, as I have no confidence at all in the Urology Department at Bolton. I would like you to confirm in writing that you have done this, as soon as possible.”

I was summoned urgently to a meeting with my consultant. My third review was again clear. I relaxed. He then said he would arrange my next appointment for a date six months off. The relaxing stopped. I had been told that I would be seen every three months for two years by The Christie, then it would go to six monthly for a couple of years, then I would be seen annually, up to the ten year point.

If he was going to move the reviews like that, then he was going to refer me back to The Christie. And if he didn’t I would ring my surgeon’s secretary and do it myself. I saw his face drop at the thought of the inquest there would be over me going back to them and he said, ok, he would see me quarterly personally and I would get letters with my results on time and I didn’t need to go talking to The Christie about this.

Life continued more normally. I felt better than I had for a while health-wise, though I still got very tired and had afternoon naps at times.

My next review came up. I had actually had some guitar picks made in anticipation of being one year clear of cancer. I had been to have the blood test for my PSA in advance, so he could give me my result on the day.

NEVER jinx a PSA test result by celebrating it in advance.

The consultant advised me that my PSA result showed some cancer activity in my prostate cavity and that my reading was 0.08. This was not really any huge cause for concern and could even just be a blip. I was hugely concerned, of course, and have never used the guitar picks. I never got the letter with my result, either.

Three months later, I followed the same procedure and my result from the PSA test was a reading of 0.10. This was indeed a microscopic reading and would have been insignificant and no cause for any concern if I still had a prostate gland. He said that a reading of 0.20 would be treated as a recurrence.

Three months later, I was told that my PSA reading was 0.20.
A recurrence.
There were some cancer cells in the fat around my prostate gland.
I agreed to see the Radiology consultant again.

The appointment came round quite quickly. We discussed the story so far, so he knew that I was making an informed decision. I agreed to radiotherapy at the Christie in Salford and also to hormone treatment, because it gives a better result. Side effects were again discussed.

He issued me with a prescription for a course of tablets and for an injection, which I would have at my GP’s surgery. I ordered the injection at the hospital pharmacy and collected it the next day.

The box was enormous. It was a big needle and the contents of the first injection were a slow release formula that would start the destruction of my testosterone, leaving the cancer with nothing to eat, apparently. I went to my GP’s and was a total wimp about the needle. It was stuck into the left side of my belly. It hurt. A lot.

Some weeks later, I had the second injection. That came in a big box and hurt a lot too and it went into the other side of my belly. Since then I have suffered from hot flushes (Lynda says “Welcome to my world), more tiredness and irritability, some slight memory loss. I have not grown breasts, or started wearing lipstick.

I had the third slow release hormone implant injection on March 29th 2018. I am also had the 20 low-dose 10 minute radiotherapy treatments, which I covered day-by-day in my first radiotherapy blog. I have not gone though this for nothing. I want it gone.

My first PSA test following the radiotherapy was in July 2018 and the cancer showed as less than 0.01, which equates to undetectable. I am cautiously pleased with this result, but every time I have a PSA test, I know that there could be a small trace reading.

As to how I am, some time after the surgery....
Since then it has been a slow and sometimes aggravating process, getting my life back to a new kind of normality. Some things are just the same. Some things aren't the same at all. I 'took the deal' when I agreed to have the operation and I have no complaints. I'm just so glad to still be here.

My sleep cycles keep going out of whack. I'm really tired a hell of a lot of the time, sleeping during the day for the odd hour or two, a bit emotional and prone to mood swings and also a much grumpier bugger than I ever was before. I can't do as much physical work as I used to and I cut down for a while on gigging. I still go to the loo a lot and feel the need to go quite suddenly, but that is because 'the plumbing downstairs' feels a bit different than it was before, though I have got used to it.

I totally lost my previous ability to suffer fools, or put up with their utter foolishness, so I changed bands. So some good came out of all this.

When they looked at my prostate gland properly, a while after its removal, it was far worse than they imagined it would be in the areas where they had not checked it. The word that was used (I think) was 'fried'. I was later told in passing by an Oncologist that the cancer had also gone into my seminal vesicles, which had been removed, as a precautionary measure. A sobering thought.

I am currently being seen by The Christie and The Royal Bolton Hospital on a three-monthly review basis, to check my current status. My treatment is ongoing, as there was still some evidence of cancer cells via a very small PSA reading. I ended up having hormone treatment and radiotherapy in early 2018.

I have to admit that it’s always somewhere at the back of my mind. I have said I keep it in a box and forget about it, but occasionally I have to look in its direction and do something about it.

My consultant said if I had not done anything, I would go ten years before developing symptoms. I am 59. I will be 60 in October 2018. I do not want to have symptoms to deal with at 69 (or earlier) that could lead to my death. That’s why I’m having the hormone treatment and radiotherapy.

I want it gone.
I want an annual review that says WE FOUND NOTHING.
I don’t want to worry any more.
I don’t want my wife and family to worry.
I’m doing what I can.

Prostate cancer kills men.
It kills a lot of men.

People ignore clues and it gets them, because they just don’t go for that blood test. It is ‘the cancer to get’, if you have to get cancer, because it is treatable if it is caught early enough. It is not caught early enough in many cases.

I have had to go through a lot to get to where I am now. This is because I ignored the very sensible and reasonable ‘nagging’ to take ten minutes out to go and see my GP.

I have seen friends who have had cancer affect their lives terribly. I am not going to say that I have been through the mill in exactly the same way as them, although the prostatectomy was a seven hour operation, with robotic assistance and it was quite debilitating for some time afterwards. It has had effects on me and a number of aspects of my life and my mental state. I will probably never hold down a 9-5 job again. I don’t feel fit enough to do it.

My Dad was 81 when we lost him a couple of years ago.
My grandfather on my Mum’s side was 90 when he passed away.

My Mum was 58 when she passed away.
She never saw my children, or met my wife Lynda, which is a great cause of sorrow for me. It was her birthday yesterday. She would have been 87. She has missed so much.

I have seen friends affected to different degrees by this dreadful disease. I lost a good friend while I was writing my radiotherapy blog and have talked to other people who have fought cancer. It all made me feel mortal.

I believe that we all have a piece of paper in a filing cabinet drawer somewhere with our end date on it.
My intention is that my end date is a long way off.

At the back of my mind is the nagging fear that one day this will get the better of me. Of course it is an ever-present worry. but my chances seem to be really good. I started dealing with this before it was too late. I am doing all of the things that I have to, in order to beat it. My daughter has a baby on the way, so I want to be here for a good while yet. I am reasonably confident that I have some years to go yet.

If you're a guy and you've hit 50, get checked out.
If you're a woman and have a guy of that age, drag them down to the doctor by their hair, for their own good.

More information on where I'm up to is below. My daily radiotherapy blog is here.
The Christie at Salford's guide to radiotherapy is here.
I can also recommend Eric Craven's blog here.
Stephen Fry gives his experience briefly here.

Thanks for reading this.
Wishing you the best of health.

This is a 'living document' and it will be edited and added to, as I go along.

November 2021:
I had a camera inserted where I didn't want one, on November 11th. It was interesting to look around the inside of my bladder, hopefully for the one and only time in my life. There were obvious signs of damage from my radiotherapy. Usually, you can't see any blood vessels or veins, but the radiotherapy had made them a little more prominent. Disconcerting to see, but better than the alternative. Nothing that was considered sinister was spotted.

What is the prostate gland?

Tell-tale signs:
You may have any (or none) of these symptoms if you have prostate cancer:
* Low back pain at the base of your spine.
* Blood in your pee.
* Peeing often.
* Feeling like peeing often with little result.
* Getting up in the night to pee.
* Some degree of erectile dysfunction.
More here.

It only takes a few minutes to contact your doctor and ask for a blood test to check your PSA level. I advise any male on here aged 40 or over to do it. Better safe than sorry.

If the PSA Reading comes back low, then repeat the blood test annually.
If the PSA Reading is higher than 4.5 then a biopsy of the prostate gland will be needed.
This involves a local anaesthetic and 12 snips being taken from the gland. There is a risk of sepsis.

The options (if cancer is found by the biopsy) are:

A course of hormone tablets and injections to reduce the testosterone in the prostate gland, followed by a quite intensive course of radiotherapy, which I am told is rather uncomfortable. It does not stop cancer coming back in later years - in fact the radiotherapy can cause cancer.

*** I would add that following option A makes the cancer inoperable at a later stage if it returns.

The complete removal of the prostate gland, via keyhole surgery, which is a one day robot-assisted operation with a 4-8 week recovery period. There are a number of side effects, but cancer cannot re-grow in the actual place where an organ has been removed.

Option B looks fairly daunting, but I think anyone diagnosed would want the cancer gone.

A video of a prostatectomy operation is here. Not for the squeamish.

Brachytherapy: The insertion of low dose or high dose radioactive pellets in the prostate gland, which kills off the cancer. Your PSA reading has to be low enough and your biopsy should have the correct results for this to be considered.

Doing nothing is NOT an option.

All men of a certain age should really ring their doctor and arrange a quick PSA blood test every year or two. It took me five minutes to pop in and have it done. The much-feared finger up the rear doesn't always happen, unless there is a problem. You are far better off having the blood test and finding out if there is a problem, and then getting it sorted. If you ignore it, you could have the cancer spread to a point where it can't be dealt with. It took me five minutes to pop in and have it done. It has saved my life. Really, it HAS.

General information about prostate cancer can be found here.

This is a video describing a radical prostatectomy.
I admit I am still unable to watch it.

REVIEWS and 'diary':

July 2016:
Following a review at the end of June, in which they told me that my prostate gland was a in a lot worse state than the biopsy had indicated, I got a letter from The Christie regarding my PSA level following the removal of my prostate gland. I was cautiously happy with what was said ('undetectable'). A couple more reviews like that and I will be able to breathe a little bit more easily. I don't like to count my chickens, etc....

October 2016:
I got another letter similar to the one above. Another 'undetectable' reading. You can't ask for better than that. I just need another nine and a half years of those. That's probably how long I am going to be monitored for. All the more reason why people should get themselves checked out.

February 2017:
Another 'undetectable' reading on my PSA level from my January review. This means the cancer has thankfully not spread to anywhere else in my body. Fortunately, the prostate cavity is a sealed unit. When the letter from the hospital arrives with my result, I still always hold my breath while opening it. I never take the result for granted.

May 2017:
I was getting quite cheerful about the 'undetectable' readings, so it stands to reason that I should get a 'detectable' reading this review - albeit a really tiny 0.08 reading. I have to go back in July to see what that next reading will be and then decide upon a course of action to deal with it as necessary. This could involve me having a course of radiotherapy, which I dread the very thought of. However, the alternative is far worse.

July 2017:
My PSA reading has crept up - slightly - to 0.10. The Consultant said that 0.20 is classed as "a recurrence", so we will see what happens at the November review. I can see radiotherapy looming on the horizon and if that's how it goes, then that's how it goes..

November 2017:
My PSA reading has now gone up to 0.25, which is at the level where I should really get something proactive done about it. I was prepared for this after the two previous readings, but hearing about the actual amount of my PSA rise came as a bit of a shock at first. I have been told that a course of radiotherapy could cure the problems and at a low dosage too, seeing as I don't have a prostate gland anymore. I have been referred for radiotherapy, so there will be another report in a while....

1st December 2017:
Today I start on tablets as part of my hormone therapy and I have the first of three injections next week. I will probably be having my radiotherapy at the Christie's Salford branch and that will be 20x 10 minute sessions, done Monday to Friday over four consecutive weeks. I am not looking forward to any of this, but it is far better than 'the alternative'.

4th January 2018:
Today, I went for the second injection in my course of hormone treatment, which is aiming to help reduce and defeat my prostate cancer problem. The needle was bloody huge and I was not too brave about it. But it is done now. Back in three months (at the end of March) for another dose of the same.... I will probably be having radiotherapy to nuke the general area at the same time. I'm not happy about the expected side effects, but it's STILL all better than 'the altenative' by a long way.

9th February 2018:
The hormone treatment seems to have properly kicked in now and I am getting hot flushes, which affect me worst at night. I have felt like passing out on stage a few times.

February 15th 2018:
I have got the dates and times for my radiotherapy treatment at the Christie in Salford, from March going into April. Not looking forward very much to the actual treatment, but I have no real choice. The hormone treatment is still playing hell with my core temperature and I haven't had a good night's sleep for a while. Still, I have it to do.

March 8th 2018:
I am writing a radiotherapy blog while I have the treatment - I started it today and it's here.

July 2018:
I got a PSA reading of less than 0.001 last week. Undetectable again. Obviously, this is the way forward. I am cautiously optimistic about the reading, as I have had that before. I can't have radiotherapy again.

October 5th 2018:
My PSA reading is undetectable again at less than 0.001.

October 2nd 2019:
My PSA reading is undetectable again at less than 0.001.

April 7th 2020:
All clear for another 6 months with a PSA reading of 0.01.
A huge relief, but I will be ready to worry about it all again in 6 months.

October 13th 2020:
A PSA reading of 0.02, which makes me slightly cautious.
Let's see what the next one does.

April 13th 2021:
A PSA reading of 0.03. Up a tiny amount from last time, but Urology are very happy with that result.
They want to see me again in a year's time.

October 4th 2021:
My PSA has risen to 0.09. That's a bit of a leap. More than I was expecting.

April 14th 2022:
The Urology nurse rang me at 8.30am and called my PSA reading of 0.18 'lovely'. I told her that I'd previously been told that 0.20 is considered 'a recurrence'. I said I could really do with talking to someone about it. She sounded slightly taken aback and said I am seeing my Consultant in October. This is the same Consultant that I had complained about some years ago, threatening to go back to The Christie. Lovely.

August 8th 2022:
My consultant rang... well, one of his minions did. A nice chap called Abdul. Apparently, the Macmillan nurses had spotted that my PSA is rising month-on-month and decided something should be done about it. My result this time is 0.20 - officially a recurrence. So, I've got cancer again. But only a little bit. I'm still fuming at the person I spoke to last time, who couldn't wait to get off the phone and away from me when I pointed this out. I'm currently digesting this information. Something will have to be done at some point, but they are going to watch it a while. I'm having my regular review in October, so we will see what they say then. It shouldn't have time to go up that much.

I passed the information onto my children today. I don't believe in giving them nasty shocks and I have tried to be honest about where I am up to with all of this. I could get to a nice old age before this has any effect on me. That's what I'm telling myself, anyway. If it starts going rogue, I would hope the hospital would get quite a bit more actively involved in sorting it out. I don't really like the idea of chemotherapy, but it is better than the alternative.

October 2022:

Macmillan put the extra review in in August, so Urology in Bolton naturally decided to try to dodge the October review and cancel it, Well, SOD THAT. It was put there for a purpose. If someone in a department ever messes you arround, just complain to your local Patents Advice Liason Service - they kick arse and sort things out.

I am now in the situation where my PSA is at a level of 0.26. This means follow-up treatment - I assume chemotherapy. Bring it on. I have no choice. Do it to me. I speak to my consultant on the 13th, so let's see what's happening.. He's not going to be able to dodge ANYTHING.

November 15th 2022:
I went to the Churchill cancer unit this morning. This week's urologist has rang inbetween a very recent appointment with him and this appointment to cancel the CT PET scan I was due to have, as he thought it would make no difference to the treatment. I doubt he had even referred me to The Christie for the scan. I always thought 'knowing what you're dealing with' was better, but hey ho... Basically, my PSA is extremely low (0.26 at last check). While it is a sign of SOME cancer activity, they are not too worried at present. Something will have to be done, but not straightaway.

I am being referred for a 'sensitive scan' (to replace the one that my urologist cancelled) - but there's an 8 week wait at present. That will show what's going on. I have a follow-up appointment in February. They wouldn't propose serious medical intervention until my PSA is higher.

February 2023:
I was referred for really a urgent MRI and a CT scan this week. I've not had a scan for some years, as my consultant and I fell out over his practice methods. My PSA is now 0.37.

March 2023:
I had a further CT PET scan at the Christie Hospital in Manchester. Macmillan have rung me to tell me that I now have cancer on a lymph node and that I have an appointment on April 11th to decide next steps.

This just shows that the chap who cancelled my first scheduled CT PET scan is a fool who shouldn't be working in a hospital.

I am not going to go to bits about this. There are things that can be done. If they ever tell me there is nothing that can be done, then I can panic, though I've now reached a decent enough age and have no complaints. I'm not being brave - I'm just not going to tear myself apart with fear of stuff going badly wrong, as that will make me ill, too. I'd love to see my granddaughter grow up and get married. She is the apple of my eye (to coin a phrase), so I have work to do.

April 11th 2023:
Just had a phone call from my Oncologist. The cancerous lymph node is so tiny they'll never be able to find it, so there is no chance of surgery. Too much scarring from last time etc. So, I am being referred to The Christie for radiotherapy. They will compare the radiotherapy sites between now and last time, to make sure that they can do it. My Oncologist thinks they will be able to. That will hopefully very accurately zap the cancer. There's also an option of hormone treatment to follow on. Next appointment with her is in 6 weeks. as a keep in touch while my referral goes through.

April 25th 2023:
I went to the Christie, saw my Consultant and had a planning scan for the Stereotactic ablative radiotherapy treatment that I will be having. The treatment will be in 5 parts. I was given my treatment schedule as I left.- 5 dates between May 16th to 26th.

(This way to my 2023 Radiotherapy blog) for all of the gory details and lots of stuff about cats.

May 2023:
I attended The Christie for five stereotactic radiotherapy treatments.

July 2023:
The latest information is that I have an appointment on August 15th. I will get a blood test done the week before. I should find out at that point if anything needs to be done in advance of my scheduled November Oncologist appointment.

August 15th 2023:
My PSA level has risen to 0.52. Not what I wanted at all, but possibly and hopefully a result of the damage caused by the course of radiotherapy and a temporary blip. I will find out more in late November.

November 2023:
My PSA has lowered to 0.37, which is quite a relief.

Our NHS is something we should be so very proud of and do our very best to protect.


© Ian Edmundson
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