My journey to the club nobody wants to be a member of

For most of my life I have known that I was at hight risk of getting Prostate Cancer. My mothers father was diagnosed and died 8 years later in 1976 and then my father was diagnosed and died 8 years later in 2002 neither of them saw their 73rd birthdays.

So from the age of about 35 I have been having annual PSA checks and as with everybody with age it was growing a little.

In late summer 2022 I was talking to my Doctor who has noticed a steady increase in my PSA 3.1, 3.3, 3.5, 3.7 so he decided to do a further test and this time it was 4.1 and suggested I go for a scan just tor rule things out.

The scan lead to a biopsy in September 2022 and of the 24 samples that were taken 21 showed cancer and I instantly became a member of the club that nobody wants to join.

Discussions were had and because of delays due to Christmas my operation was booked for Friday 13th January 2023. In the preparation I made it clear to everybody I spoke to how anxious I was about this whole situation (not expecting to be unique there) given the family history from both sides and they assured me that my anxiety would be dealt with. The day came and off I trotted to have my life changed forever.

The surgery was performed robotically and when I came round the surgeon came into the recovery room and told me the operation was perfect. I had a catheter in which I was told would be removed 10 days later and mentally this became a huge recovery milestone for me. I could cope with catheter for 10 days as I'd be getting better when it came out. I spoke to 1 of the nurses on the Monday after my surgery and was assured the catheter would be removed the following Monday. It got to day 7 which was obviously Friday and I still had not had my appointment to have my catheter removed on the Monday so I telephoned again to be told that they weren't doing it the following Monday it would be the week after, no explanation as to why was offered just a you have to accept it attitude. Because of the milestone that my mind had made of this removal my anxiety flared and that was met with the equally obnoxious response of you can't talk to me like that and the phone was put down on me. I phoned back and demanded the surgeon telephone me and explain why everything had so drastically changed. Although I did get a phone call from 1 of the senior nurses I did not get the call from the surgeon explaining the reasoning for his change of mind until the Wednesday of the following week a full 12 days after my operation and 2 days after the first milestone in my recovery had failed to be met. An explanation of a larger cut into my bladder so extended recovery time was given as the reason. The catheter was eventually removed on Monday 30th January a full week later than planned.

I was then left with no contact from the hospital until my follow up appointment in March 2023. Now considering my operation went well and was a perfect operation and my catheter had only been left in to ensure that a slightly larger than normal cut in my bladder was allowed to fully heal imaging my surprise when the first thing the surgeon says is 

you still have cancer we didn't remove it all

I didn't hear the rest of what he said to me and went home to get exceptionally drunk.

I had to go back to the hospital a couple of days later and take my wife so somebody could tell me what I have been told by my surgeon and hopefully this time it would sink it as much as the

YOU STILL HAVE CANCER

bit did.

A PET/CT scan was booked for April and when the results came out I was told that the cancer that remained could not be found and I would have to go without treatment until they were able to find it and they expected to be looking in October 2023. So 6 months with cancer growing wild inside my body and that was it.

As you can imagine anxiety levels were now reaching an all time high so I contacted the nurses to be told we can deal with that later lets worry about the cancer first so for 6 months I was left to sort myself out while growing cancer wildly somewhere within my body. Alcohol became my self medicated way of dealing with how I was being treated, not to the extent of becoming an out of control alcoholic or even a functioning alcoholic but still considerably more that the government recommended weekly intake.

Unable to deal with what I was not being told I took myself off for PSA tests at my Doctors and yes the cancer was growing and growing quicker than what had been expected I tried to contact my oncologist and eventually got a reply being told that the growth of my PSA was not really that important the major factor was when it had doubled. I then pointed out that over the last 3 months it HAD DOUBLED, silence. Another PET/CT scan was booked for me.

I had now moved house, moved area and changed GP and what a difference. A new oncologist was contacted, I was put forward for this test and that test and every necessary test. Everything that could be done was being done and I WAS BEING TOLD ABOUT IT.

The appointment for my PET/CT scan came through on Tuesday 5th December 2023, I had an abdomen scan the same week and my new oncologists secretary was phoning me to make an appointment for the 13th December 2023 to discuss my PET/CT scan results. 

The appointment with the oncologist was in no way rushed no question was to difficult and things that I had previously mentioned during my treatment were not on my notes and proved to be quite significant and explained certain things I was suffering from. Although I was being told that I still had cancer and my cancer seemed to be a type that liked to play hide and seek so after some radiotherapy treatment it could not be guaranteed that I would be cancer free and would probably have to be closely monitored for a long time, maybe even a lifetime, after my treatment I came away feeling that someone was actually taking care of my treatment and recovery.

Within 24 hours I was contacted by the department that needs to start the next stage of my treatment and that was booked for a week later. So on Friday 22nd December 2023 I am off to have a further CT scan and to be tattooed so they know where to put the radiation equipment, I have been taking hormone therapy  since 13th December and am expecting to start my radio therapy in January 2024 with it finishing towards the end of March or beginning of April 

What a difference a postcode makes.