Adrian Simons is 67 and lives in West Suffolk. He was diagnosed with prostate cancer in August 2020 but he knew something was wrong many months before he was officially given the news. This is his story, starting from when he realised something wasn't quite right. Adrian has kindly given us permission to publish his thoughts as he goes through his treatment.
MY JOURNEY WITH PROSTATE CANCER
JANUARY 2020 - WHERE IT ALL STARTED
I went to my doctor for a regular well person’s check-up. I had one two years ago when I turned sixty-five but I didn’t have my prostate checked then. This time round I had the usual tests done but again he didn’t check my prostate. I had already decided to ask him to check it before I went and, as he didn’t suggest it, I asked him to. He questioned why I wanted it done which I found surprising, but I explained I had never had it checked and thought it was important in men my age. Anyway he checked it the usual way, a little discomfort but nothing more and it only took a moment. He said that it was enlarged and he would send me for a blood test. He printed out the form and said he would be in touch with me with the result after I had been.
I went and had my blood test. I have no problem with needles as I used to have regular hay fever injections when I was younger. My doctor rang me a few days later to say that the PSA level was high and I would need to have an MRI scan. I didn’t know what this PSA level was or how it was significant. My doctor explained that the PSA is an enzyme in the blood produced by the prostate gland. A high reading denotes a sign of prostate cancer. In the majority of men, a reading of 2.6 to 4.0 is normal but some have even lower readings. Mine came back as 6.88 which rang alarm bells with my doctor and I knew then that there was a problem. So even before anything else had happened, as far as my MRI or resulting biopsy were concerned, I knew I had cancer and was then prepared for anything that might come along.
MARCH 2020 - THE INVESTIGATIONS BEGIN
I received a letter from the Urology Department at the West Suffolk Hospital in Bury St. Edmunds saying I had an appointment on 9th March. I went for my consultation and had to drink as much water as possible beforehand. I then had to go into a room and, (behind a curtain) had to pee into a vessel which fed into a container which measured how much and how long it took me to empty my bladder. I must admit it has become more and more difficult to empty my bladder over the last couple of years .. where I could once pee six feet up a wall I was now struggling to get it any higher than my ankles! I just assumed that it was part and parcel of getting older, but little did I know that it was another sign there was something wrong. Your prostate is next to your bladder and with a cancerous tumour in your prostate pushing against your bladder it reduces the flow of urine. All news to me. I felt quite guilty because with the internet readily available I should have checked it out long ago for myself. I was prescribed with a drug called Tamsulosin which is designed to help you pee better.
I received a letter giving me a date of 27th March for my MRI scan. As the coronavirus pandemic is getting worse it looks more and more like my scan won’t happen. I've been taking the Tamsulosin drug for a few days now and it has definitely helped my flow.
On the 23rd March we all go into lockdown. I eventually got a letter saying my MRI scan had been cancelled. I wasn’t surprised .. who knows when I will have it now?
APRIL 2020 - GETTING MY THOUGHTS TOGETHER
Still in lockdown. I continued taking my tablets which helped my flow but definitely didn’t return it to anything like its original state. I hadn’t been officially diagnosed with cancer but I sort of knew the worst. When you get to a certain age you start to think about how long you have left. I often think how much of my girlfriend’s grandson I will get to see. He’s ten now and I used to imagine would I see him make eighteen or twenty one. Would I see him get married and have kids? My mother died eighteen months ago at the grand old age of ninety-eight .. would I make it to her age or would I only make it to my Dad’s age of sixty-eight? It all sounds very morbid but as you get older, and there are more years behind you than in front, these things do cross your mind. What also crossed my mind was that my Dad and my eldest sister both died at sixty-eight. I would be that age next year.. is that an omen?
I decided to have a radical clear out of all my stuff. I wouldn’t want the thought of someone having to go through all this. I had basically retired from my painting and decorating business so thought I would begin with shredding all my bank statements and anything relevant to the business. I had stuff going back at least six years so I filled quite a few bin bags!
I bought a plastic box and then set about putting anything important, such as private pension paperwork, car and van insurance details and such like into separate envelopes and marking them clearly. I remember when my father died back in 1990 and as much as he was a successful businessman, his idea of keeping his private stuff together left a lot to be desired! It took myself, my mother and my two sisters quite a while to find all the details of my father’s dealings which was quite distressing for us all. I decided then I would never leave my things in such a mess. So by doing this I was happy that if anything happened to me, anyone going through my things would instantly be able to find everything. It’s not being morbid it’s just sorting out your life. My girlfriend and I both made our wills and paid for our funerals last year .. another thing your loved ones don’t have to worry about. It was all quite therapeutic having a massive clear-out. I used to keep such a load of stuff.
JULY 2020 - SOMETHING'S NOT RIGHT
We eventually come out of lockdown and I received notification that I would be getting a phone call from the Urology Department on Friday July 10th. The phone call consisted of being informed about my MRI scan. The doctor explained that I would be in the MRI scanner for about forty five minutes and that the outcome of it could be an abnormal area detected. He also told me that if anything showed up from the scan it would lead to a biopsy of the prostate gland.
I had the MRI scan and it was totally painless. They even gave me headphones and asked what I would like to listen to! Another blood test followed to check my PSA level followed by a phone call from the Urology Department saying they had the results of my scan .. a tumour had been found and an appointment would be made for a biopsy. I was told my blood test had a PSA level of 6.74 which was down on my initial 6.88 back in January. It wasn’t a lot, but it was better than nothing.
AUGUST 2020 – THE HAMMER BLOW
I received a letter giving me a date of my biopsy for Friday August 7th which told me that it would be best to arrange a lift home as I wouldn’t be able to drive. I went for my biopsy at the West Suffolk Hospital where my consultant took twenty four wafer thin slithers of my tumour. It was a little uncomfortable but obviously important to have. I was very tired afterwards and slept for the rest of the afternoon .. I slept a lot during the day after this.
Shortly afterwards I received a phone call from my consultant saying I had an appointment to see him regarding my biopsy. If I wasn’t convinced before that I had prostate cancer, I was now!
I saw my consultant and he confirmed I had prostate cancer. He was quite blunt about it all when he told me and I feel maybe someone who was more disturbed by this revelation would have struggled with accepting the news in such a thoughtless way.
He explained I had a Gleason score of 3 + 4 = 7. The Gleason scores range from 6 to 10 .. six being the mildest and ten being the most aggressive. The score 3 + 4 (which is also classed as Grade 2) is better than 4 + 3 (which is Grade 3). He said as I was not overweight, fit and in good shape I had all the options available to me. I was then taken into a separate room and a very nice specialist Urology nurse explained it all in detail to me, telling me what forms of treatment were open to me and not to be too upset as my cancer was classed as mild. She explained that I could have what they call active surveillance, which is having regular blood tests to keep a check on the PSA level. Then there was radiotherapy or finally surgery.
I immediately thought that surgery was my best option as I just wanted to get this thing out of me! The nurse told me to think about it over the next few days, and the weekend, and let her know my decision the following week.
When I got home my girlfriend and her eldest daughter were there. When I told them I had prostate cancer they both began crying and we had a group hug. My girlfriend’s other daughter rang me a little later and was crying on the phone when I told her. It seems my family have taken it much worse than I have.
I feel very lucky though. My outlook on life has always been a very positive one and I feel this has really helped me to accept this. Everyone I talk to expects me to be depressed and down by my diagnosis and needing someone to talk to about it, but I don’t feel that way.
Both my girlfriend and her daughters tell me I should have the surgery.
I searched on the internet about how to get your PSA level down and found out that taking Vitamin D, Omega 3, drinking green tea and eating tomatoes would help. I have started doing all of these. I have bought small packs of cherry tomatoes and will eat them on my way round the golf course when I play.
I rang the Urology Clinic and spoke with a nurse I saw last week. I told her that I had decided to have the surgery and she said she would get a consultant from Cambridge to give me a call to talk to me about it.
SEPTEMBER 2020 – SURGERY IT IS THEN
I found out that one of my golf partners, who is in his seventies, had a blood test to check his PSA level. It came back as 0.65 which made me realise how high mine actually was!
I received a letter to tell me that I would get a call from a Urology and Robotic Consultant in Cambridge on 15th September. My consultant rang me to discuss my case and he asked me why I had decided to go with surgery regarding my cancer. I told him I just thought it was the best option. He said there were side-effects to having surgery and I would need to stay in hospital for between one and seven days. I also might get erection problems afterwards and I would need a catheter for a while afterwards while the area heals. I may have bruising and swelling in and around the penis and testicle area, even having radiotherapy had its own side-effects. I would also need treatment five days a week for about four weeks - this can cause bowel, urinary and erection problems as well as tiredness and fatigue and it may be some time before I find out if the treatment has worked. He explained that my cancer was a very mild one and that the chances were that in ten years it wouldn’t be any worse. He also said that by the time I was eighty there was more chance of me dying of something other than prostate cancer. He advised me to go down the active surveillance route which would involve having regular blood tests and monitoring the PSA results. If there was any increase then we could discuss possibly having surgery. Talking to him I realised I was being a little hasty wanting to go for surgery and it persuaded me to change my mind and I decided to go along with the monitoring option. I felt quite upbeat after the call.
I told all the family and they were more than happy with my decision. It reassured them that it wasn’t as bad as they had first thought and it put their minds at rest.
OCTOBER 2020 – THINGS DON’T GO TO PLAN
I ran out of Tamsulosin tablets so got a repeat prescription. I got them from a different pharmacy and after taking just two found they made me incontinent. I came back from golf and wet myself before I could reach the toilet.
I rang the Urology Clinic to discuss the problem. They couldn’t understand why it had happened and advised me to try them again but I decided not to as I just couldn’t risk it. I'll have to live with a reduced flow, well at least for the time being.
NOVEMBER 2020 – SOME GOOD NEWS AT LAST
Another visit to the hospital for another blood test. Should be interesting to see if the measures I am taking make any difference. My consultant surgeon rang me to tell me my PSA level was now down to 6.08 which was great! I told him what I had been doing to get it down. He told me that the things I am taking were more for men without prostate cancer to help get their PSA level down. He couldn’t say if it had actually helped my PSA but to continue with them as they weren’t doing me any harm. He said my next blood test would be in March 2021.
I’d like to think I had helped get my level down. I shall continue taking them all, continue keeping fit, and continue watching how much I eat, for as much as I don’t like the thought of this thing growing inside me, I would like to think I have some control over it with how I live my life. I don’t get stressed out or worry unduly about anything. In fact it is usually ME who has to de-stress my girlfriend who is finding lockdown so difficult.
JANUARY 2021 – MAYBE I CAN HELP OTHER MEN
I’ve always been a very private person, never wanting to talk much about myself I would rather show interest in other people. I had only told my closest friends about my cancer but then I watched a programme about Bob Monkhouse who was a celebrity during the 70’s, 80’s and 90’s. He died from prostate cancer because he didn’t catch it early enough and I thought maybe I should try at help other men. If I could reach just one person and get them to go and get checked out it would be worth it. An old customer of mine has heard about my story and told me she was going to get her husband to go to his doctor which pleased me no end. Job done!!
MARCH 2021 – FEELING NERVOUS AS ANOTHER BLOOD TEST LOOMS
I went to the hospital to have my four-monthly blood test for my PSA level and I am apprehensive to see if it has gone up. I know my cancer is supposedly a mild one but you can’t just take it for granted that it won’t get any worse. Obviously my main concern is if the PSA level shoots up for some reason for as much as I want it to fall, with each test I realise that isn’t going to happen. It won’t just shrivel up and disappear .. as people with cancer will tell you, you have to learn to live with it. I don’t talk about it to anyone and very few friends and family mention it. I still think cancer is something of a taboo subject even today. People know that it is out there but are not happy talking about it.
I was a little nervous and apprehensive, waiting for my phone call from my consultant. He rang me earlier than was planned which threw me a bit. He said that my PSA level had gone up slightly to 6.30 from 6.08. He said it wasn’t anything to worry about. He asked how my urine flow was and I told him it was pretty poor as I wasn’t taking my Tamsulosin tablets. He said he wanted me to try them again and said he would send me another prescription. He also said he would book me in for an appointment to have my urine flow checked again. I came off the phone feeling a little upset that it had gone up, but relieved that it was only slightly.
I received my prescription in the post for the Tamsulosin tablets and decided I would get them from the same pharmacy as I did when I got the first batch and not my surgery when I got the second lot which caused a lot of problems for me.
APRIL 2021 – LOOKING ON THE BRIGHT SIDE OF LIFE
The tablets seem to be working better but when I feel the urge to pee I have to go immediately or I wet myself, not to the same degree as before but enough sometimes that I have to change my clothes. It’s a pain and not how I expected I would ever be at this age but I have to come to terms with the fact it is part and parcel of cancer! My golf partners find it funny though .. we might be chatting as we walk up the fairway, then they will turn round to talk to me and find that I've disappeared to go to the toilet!
MAY 2021 - GETTING CAUGHT SHORT!
I decided to stop taking my Tamulosin tablets as I just didn’t feel confident enough. Although I hadn’t had any accidents I felt it was just too risky. When you are out somewhere it could be impossible to find a toilet quickly. I know some women will say that it’s okay for men, that we can go anywhere, but if you’re caught short in town for instance you can’t really just pee up against a shop window! Though I imagine some men have especially after a heavy drinking session!
JUNE 2021 - MORE TESTS
I received my appointment for my urine flow test at the Urology Clinic. I must admit I had forgotten all about it so it was a surprise when it came through as I thought it was just the same as the previous one I had. When it said in the letter the procedure could take up to 45 minutes I had to read on as the last flow test I had only took ten minutes! This procedure I was booked in for is called a Urodynamic Assessment and is the study of the function of the bladder. It is not a treatment for my urinary problems; it is a test which will help my Urologist to decide upon the most effective treatment for my symptoms. It said that I should stop taking my Tamulosin tablets 10 days prior to the appointment. That wasn’t a problem as I had stopped taking them a month ago! I had to fill in a form noting my drink intake and urine flow over the three days prior to the appointment and noting when I had a drink, what it was, how much I drank, when I went to the toilet and how much I passed.
I then started my form. I had to use a measuring jug to check exactly how much I drank and more especially how much I passed! Shan’t be making any gravy in that again!
JULY 2021 - AND THE RESULTS ARE IN
I went for my next blood test and was in and out very quickly but very apprehensive to see if my PSA level has gone up. I went for my ‘procedure’ and had to strip off and put a gown on. A nurse practitioner then cleansed my genital area with a mild antiseptic solution. I was lying back and thinking of England by then but it was more embarrassing than uncomfortable. These apparently were to allow measurements to be taken of the pressures inside both the bladder and urethra (waterpipe). Once they had filled my bladder I had to pass water into a container which measures the flow and the amount. Having to do this still with the tubes in place was a bit awkward to say the least!
My consultant showed me on the computer all the readings from the tests and said that he was going to prescribe another tablet I should take in conjunction with the Tamulosin which he wanted me to start taking again. This new tablet is supposed to calm my bladder down when full so I don’t have any mishaps in the future. Time will tell. He also told me that my recent PSA blood test was 6.37 which was virtually the same as last time. I was delighted with that as you always tend to think the worst outcome. Next test in four months.
OCT 2021 - CHOOSING A CHARITY TO SUPPORT
I play for a golf society and we had our presentation night on Friday 22nd October. We had a lovely meal and afterwards engraved trophies won during the year were duly handed out to the winners. The outgoing Captain handed the incoming Captain -yours truly- the official Captain’s tie and so my fourth term of Captain over fifteen years began. Each Captain has a designated charity that they raise funds for during their year in office. I stood up and explained that my chosen charity would be Cancer Campaign in Suffolk. I talked about the campaign and how I became involved with it. I also talked about my cancer, which, apart from this blog, I have never done. I briefly explained how I came to discover I had prostate cancer and about the PSA test. I said that caught early, as with most cancers, prostate cancer can be successfully treated. It’s only because men either don’t like the thought of having the prostate check, or they are too stubborn to do anything when they notice something isn’t quite right, that there are so many deaths from it. I urged all men who hadn’t had a check up to have one.
Afterwards I was approached by a number of men saying that they were moved by my speech and that they were going to book an appointment for a check-up. Two men that I knew, and had played golf with, told me they had prostate cancer and they were so pleased I had talked about mine. It made them feel like it was okay to talk about it as they had kept it a secret from everyone apart from their loved ones. We were able to chat about it and how they were affected by it. Another man I know well told me that his PSA level was 25.6, which was very high! Surprisingly all he had was an enlarged prostate and no cancer. He was on the same medication that I was as his flow was greatly reduced.
I was also approached by some of the wives saying they thought I was very brave standing there in front of forty odd people talking about my cancer. Some said they had been trying to persuade their husbands for ages about getting tested and the old saying “I’ll do it later” was continuously rolled out. It was so good talking to these people and I was glad that I was able to tell them my story.
I’ve always written poetry over the years and when I was first diagnosed, fearing the worst, I decided to put pen to paper and say what I felt. I would like to share it with you.
IT IS WHAT IT IS by Adrian Simons
I feel quite philosophical
about my life to date
it hasn’t worked out quite as planned
but I put that down to fate.
I know I let some people down
at times along the way
But all in all I’m happy with
the life I have today.
And looking back I wouldn’t change
the way that it turned out
for if I did I wouldn’t be
just where I am right now.
I love my life and what I have
and all of those within
and feeling sorry for myself
doesn’t fit right in my skin.
The cards that we are dealt in life
can sometimes seem unfair
but you make the most of what you have
it’s called ‘rounding off the square’.
There’s no point in you complaining
or the feeling of unjust
you must take it on the chin
and then get on without a fuss.
Few things that are worthwhile in life
can come without a cost
so I’ll spend the time ahead of me
with the ones I love the most.
JANUARY 2022 - MIXED FEELINGS AHEAD OF MY NEXT BLOOD TEST
I am not superstitious in any way or believe in fate, but it was in my mind. I had lost my father and my eldest sister when they were both 68. I am 68, and I'm desperate to make 69 just to prove myself wrong! I know it's stupid and foolish to think like that, but then I never thought I would have cancer! So when Sunday 9th January came around, instead of feeling depressed that I was another year older, I celebrated the fact that I had made it, was still here and had broken the curse if you see what I mean!
So I went for my next blood test. I must admit I was a little concerned about having to wait six months for it. It has seemed like an age because a lot can happen in your body in six months. I would have been much happier if it had been four months as it was, or even three months. Then you have the wait between having the blood test and the consultant calling you a week later. I wasn’t worried but it’s in your mind, wondering if the result is going to be better or worse. Cancer doesn’t just decide to shrivel up and disappear - if only! I hadn’t felt any different, and there were no tell-tale signs though I don’t know what they would have been anyway!
18TH JANUARY - AND THE RESULTS ARE IN
My consultant was spot on with his phone call. Half past four on the dot. He told me my PSA level had gone up from 6.3 to 7.8 which wasn’t good. He told me he was going to make my next blood test in four months instead of six, and that if my PSA level continued to rise we might need to think about the other option such as radiotherapy, chemotherapy or surgery. Damn - it wasn’t what I was wanting to hear. I think I’m going to go back to drinking my green tea, eating plum tomatoes and taking Omega 3 capsules. It can’t do me any harm and might, just might help.
I think I must speak for all cancer sufferers; it’s frustrating when there is nothing you can do to change things. If I was told I was overweight I could lose weight, if I was told I was unfit I could exercise more, if I was told I was a bad golfer I could have lessons to improve. But with cancer you just have to let it live in your body doing whatever it wants to. I think of the scene in the film Alien, where John Hurt has a little creature bursting out of his stomach!
And so we wait another four months. I’ve put it to the back of my mind and will just get on with stuff. When I told Sally from CCiS she very kindly offered a phone call to chat about it. I didn’t mean to be rude or anything but I didn’t feel I needed one. It’s not that I don’t want to talk about it - I’m writing this blog. When friends or family ask me about it I will tell them, it isn’t a problem talking to them - I just don’t get down about it. I’m quite stoic, there isn’t much if anything that gets me down. I’m used to Spurs losing, I can handle having a bad round of golf, the cold and dark winter days doesn’t affect me and Covid and the numerous lockdowns haven’t been a problem. I feel very lucky that I can feel that way because I know a lot of people aren’t able to cope with it all, or just life in general.
The nights are drawing out, the weather will get milder, the restrictions will ease and my golf game will improve! Well, three out of four isn’t bad!
Adrian's story continues ....