Disclaimer – This is John’s real story and contains discussions of sensitive topics.
John and Emma have collected the various resources which they found to be useful through what is discussed below, you can find them here.
chapter one
The date is sometime in November 2022, I was fit and healthy, running every morning, and I make an appointment to see my Doctor with 3 ailments. Like most men I had saved up my health issues until it was worth going to the Doctors, after all I didn’t want to waste their time with minor issues, but I was forced into going by my concerned wife (Emma). At that point I was placed on the waiting list for all three concerns for further investigations, but the major concern was an inability to pee with a full flow. I clearly had something wrong with my ‘water works’ which I can trace back 3 or 4 years. Checked for an infection, checked for peak flow, had the finger up the bum to check for ‘smoothness and size’. This was followed up by a violation of my body with a biopsy from the prostate and finally a standard MRI scan, all within the space of 4 to 6 weeks. Pretty efficient I thought, although I was spending a fortune on parking fees at the Hospital and needing much time off from work. I was also having tests performed on me for the other health issues I had raised a concern about and so I was attending appointments for which I had no idea which part of the body they were for.
I was a Teacher at an Outstanding Comprehensive School just outside of Bradford and considering I had an excellent attendance record, I was quite reluctant to take the time off as this meant setting work for missed classes and catching up other GCSE / GCE classes for the time I was missing. Emma continued to work from home for a national transport company. Neither of us had an indication of what was to come.
So, we waited for some results. Then in January a letter came through the post asking us both to attend a meeting in Urology at Harrogate Hospital. Still no idea.
We both walked into a generic office (Zone 5 at the time) to be faced with 2 nurses. They revealed a diagnosis of Prostate Cancer, Gleeson 7, Stage 2c, PSA 11 and all the possible treatments I could get together with a pack of reading material. I had no idea what they were saying other than ‘You’ll be OK’. ‘Fine’ I thought, ‘I can get back to work this afternoon’.
2 weeks later a letter comes through door informing me of a misdiagnosis. St James’ Hospital had re-examined my biopsy results and ‘upgraded’ me to a Gleeson 9 and an appointment to Urology, St James’ for discussions regarding further treatments, bone scans and more MRI scans ‘with dye’.
Every appointment I had with CNS / Macmillan Nurses / Consultants, all I heard was ‘You’ll be fine’.
We have two lads, at the time, one of which was at university, the other taking his A levels giving them the good news that ‘I’ll be fine’, but did have cancer was going to be awkward, but due to the invention of Zoom over the pandemic, we were able to tell them both at the same time. They thought we were telling them we were getting divorced!
chapter two
So, when you are told ‘You’ll be fine’, you just get on with life. Emma did not take this at face value and chose to read up on my condition which led to far too many sleepless nights, consumption of many prescription drugs, many tears, and just so much worry which I was unaware of due to my head being firmly shoved in the sand. I heard the word ‘cancer’, but didn’t want to say it. I was quite comfortable in my denial.
I was informed that I needed a prostatectomy. I had no choice due to the change in diagnosis. Now I was on the waiting list at Jimmy’s. That was the middle of January. Again, I wasn’t too bothered as I would get the cancer out and ‘I’d be fine’. Then February passed, then March passed. Emma was getting really concerned at this point. She knew that time was of the essence, but I had faith in my consultant(s) and the NHS. Then we got a date for mid-April, at last some closure as we could get the cancer out and move on with our lives. Nope! Gowned up, starving and looking forward to toast and tea after the operation when a ‘suit’ came over to me at 1:30pm (I was due into the operating theatre at 12:30) to be told that the previous patient’s operation had not gone to plan and that they would be in touch regarding a rearrangement of my operation. ‘Fine’ I thought, I can get back to work tomorrow.
Days went by, weeks went by and only through Emma’s persistence, letters to PAL’s (Patient Advice and Liaison Service), and my MP at the time (not sure how much use this was) did we get an appointment for the middle of May 2023. 112 days since my diagnosis in mid-January treatment finally started. Many sleepless nights and constant worry for Emma. I knew I was going to be fine.
So, the Prostatectomy came and went. Numerous holes in my stomach, a blood drain bag, a catheter, a morphine pump and a view over Leeds from the Bexley Wing. In on a Thursday, home on Friday. Feet up, I will be fine.
The catheter came out at 10am the following Friday (7 days post operation). I was back in Harrogate hospital by 2pm that day. I had a ‘small anastomotic leak’. Every time I went for a pee, some of the urine went into me. When asked about the level of pain, I would describe this as 11/10. My whole body would go into spasm. By midnight I was on a ward, with Gas and Air, morphine and various other pain killers inserted into various orifices, but still suffering the most excruciating pain every time I had a pee.
‘Let’s see if it settles down’ was the initial prognosis. Kidneys failing. I drank nothing all weekend in the hope it would heal, but it got to Sunday afternoon and 15 spasms later and no sleep, they decided to reinsert the catheter, but due to the prostatectomy this had to be done on a tether under sedation. Fentanyl!
5 days later I was discharged and told to return for a cystogram 4 weeks later. Failed, and as a bonus, it gave me an infection! Back into A&E and subsequently onto the ward for antibiotics for a further week. Returned a month later still catharised for another cystogram. Passed! Back to work! I’ll be fine!
chapter three
My PSA after the operation was 0.8 and 3 months later was 1.4. Was the cancer still lingering, or was this just a quirk of the operation? A PSMA PET scan revealed multiple tumours in the lymph nodes surrounding the now removed prostate.
In discussion with my consultant, it was revealed he had to remove not only the prostate, but also diseased seminal vesicles and much of the bladder (Further test revealed it was 1/3 of the size it should be), and one lymph node. I was now a Stage 3B (persistent prostate cancer). ADT (Androgen Depravation Therapy) and Radiotherapy was the next step of my treatment. But ‘I’ll be fine’.
Went back to work and waited for the call regarding the Radiotherapy. This came and I was summoned to St James’ once again, this time to Oncology where my Radiotherapy was discussed with other options further down the line including Chemotherapy. This was the first time Chemotherapy had been mentioned and I was surprised the effect it had on me. Probably the first time I had gone away from a meeting and cried.
The NHS provided me with an advent calendar of Radiotherapy treatments followed by the 12 days of Christmas Radiotherapy. At this point my spirits were low, but I didn’t realise how low. Emma had up till now done all the worrying for the both of us and it had told on her health, but now it was my time to worry. The previous year of trauma, current energy levels at rock bottom a prognosis of ‘This is for life’ and getting no sleep hit me in the face. Now was the time to take my head out of the sand, face up to my predicament and get help. I remember the next part so clearly.
We walked past Maggie’s (Leeds) and Emma told me to go in. But I refused and walked a little faster to get to the car. That evening, I reflected on my mental health and realised that, as usual she was right. So, the following day I returned which was the start of my relationship with the fantastic people in Maggie’s. I made the decision to sign up for everything that was on offer to men with Prostate Cancer. Stress Management courses, fatigue courses, counselling, couples counselling, Men’s Meet Up, Peer support groups, complementary therapy’s, exercise classes for cancer patients and I am still trying different treatments for the flushes, for the energy levels, for my mental health. One of these therapies is setting up a peer support group for younger men and their partners which was suggested both by my persuasive psychologist and the good people at Tackle Prostate Cancer.
It might have taken over a year, but I now realise that Emma and myself are on the same “odyssey “(we both hate the word journey) despite all the attention and treatments being directed at me. She has suffered as much if not more that myself. Seen me in pain, heard me in pain, recognised when I need support, I on the other hand missed those indicators in her. I am determined not to let this happen again no matter what the future holds for us. Currently my PSA is undetectable as the ADT is working. We don’t know for how much longer and she lives from blood test to blood test waiting for me to become ‘Castrate Resistant’ at which point my treatment will be modified.
chapter four
I applied for early retirement on grounds of Ill-Health from teaching. I can no longer stand for any length of time and walking is slow and ponderous and for no distance at all which is pretty much a polar opposite of a teacher’s day to day routine. I had built up a reasonable teachers pension I had paid into for 30 years and was subsequently successful in my application thanks to the full support of my school (at which I had taught at for 27 years) and much guidance from my Union. Emma is now the main income earner for the family and both lads are at University, so not a cheap time in our lives. The lads are fine with my situation as we keep telling them ‘I am fine’. Emma now has more pressure on her and I try to do as much as I can around the house. Fatigue and sleep are my biggest issues at the moment although as I said at the start I did initially have 3 health concerns I went to the doctors with in 2022. These are still on going and I have had numerous other operations over the last 2 years to improve my quality of life not connected with my cancer diagnosis. I take medication morning and night and have developed further health issues along the way.
At time of writing, I am 1 month away from my 55th birthday. Not working and feeling a quarter of the person I was just over 2 years ago, and being ‘In a holding pattern, until we are not’ as Emma puts it, before the next round of treatments. I know this is as good as it gets and that is a struggle mentally to deal with, but I attend at least 4 appointments each week to do with various ailments (not just cancer) to keep me occupied, and we have made some fantastic friends who are also affected Cancer with an attitude to life which is so uplifting.
Without Emma’s strength, support and love, I am not sure where I would be at this time, but now it is my time to show her how much she means to me and to support her where and when I can.
Do I have any regrets? Of course, I am a man who thought he was bullet proof.
The Dodgy Walnut 