That walnut sized organ: the Prostate

Justjens

Been on the oral hormone therapy, with a few steroids thrown in for good measure, for eight months now. Down to blood tests and oncology appointments every two months, potassium levels are holding their own so they are happy, lucky them. Ask them anything else and the default answer is 'I don't know' or 'Go to your GP', dread the place, passing the buck.

Tired? That's an understatement, can't sleep when I want to and want to sleep when I can't. If I wake to pee, which I invariably do now, more often than not I can't get back to sleep. Wide awake, good thoughts or bad, no differance. Asked oncology if there was anything I could do, guess what? 'Go to my GP'!!

Two years since diagnosis, PSA undetectable, mental strain taking it's toll though, feel it's a constant battle, waiting hours in oncology to be asked the same questions but no real answers to mine makes it worse. My partner can see it in me, poor woman putting up with this, we keep each other laughing.

I've seen a counsellor and it's definitely helped.

Keeping the business on the road is getting more and more difficult, find decision making the hardest part. I can manage the necessary but anything after that is beyond me, no energy after a few hours physical work. A good friend and a nephew stand up to be counted.

Discovered why my referral didn't go through the first time in Feb 23, he sends them by Fax! Who sends a Fax anymore? For a high risk cancer patient there was no follow up that it was received, little consolation but I've since discovered I'm not the only one. It would have taken less than a minute to hand deliver it and be back at their desk.

Had to go through Freedom of Info to access the letter from my file, another layer of bureaucracy I could have done without but now I have it.

Solicitor said suck it up, wasting money trying to get an answer as I'd get nowhere and might compromise any further treatment were it to become necessary in the future. I'll be writing my own letter, I'll be seeing the arrogant pr!ck again in a couple of months, say my piece then too.

So it's onwards and upwards, I'll keep taking the horse supositories and getting the hormone injections, seems like it's working…..and keep a positive frame of mind!

Will Graham

https://www.boards.ie/discussion/comment/121232329#Comment_121232329

I'm not sure I see the connection between that song and a DRE exam?

Calahonda52

https://www.boards.ie/discussion/comment/122296031#Comment_122296031

Take a walk on the wild side😀

Bob_Average

Hi all,

Time for another update from me.

I had my radiation sessions during February, this was 4 weeks (20 sessions) Monday to Friday at St. Lukes in Rathgar. Lovely hospital, can't say enough nice things about them.

I was lucky in that I didn't really get any side-effects (beyond tiredness) until the final week, but that week was like being run over by a truck.

As part of the routine prep before each radiation session, I had to taken an enema gel, which I had to squeeze into my backside from a little tube with a pointy nozzle. This was to ensure the bowel would be empty. But the instructions were to wait 30 minutes after inserting the stuff before going to the toilet, and those 30 minutes each day were a trial of patience, as the gel made you want to go immediately and urgently. Walking around helped, so if at some stage you encountered a man walking rapidly around the grounds of St. Lukes swearing under his breath, that was me.

Then of course, drinking a lot to fill the bladder and holding it full - that was easy some days, and difficult on others. By the time I was on the radiation table I would be desperate to go, and had to lie very still for 15 minutes. I developed some mental routines (thinking through sequences of items on lists of things) to help me through that.

As I said, I didn't have much in the way of side-effects until the last week. At that point my bottom end became fairly angry - and I can't say I blame it - and to be honest it was hard to tell what was being caused by the radiation treatment, and what was the result of constant enemas. But by that stage I could no longer tell when I needed to empty my bowels, I just felt a raging need all of the time, no matter if there was anything there or not. This slowly went away over a period of about 4 weeks during March.

Likewise, I needed to pee all the time, and would wake up six times a night to pee. This has gone away more slowly, I'd say I was almost back to normal by the end of May.

It hurt to sit down for the first few weeks, this too faded away over about 8 weeks.

I had my second hormone injection in April (it was due in March but I ended up in hospital with pnuemonia at the time it was due). The first injection had given me only mild hot flushes, but the second seems to have impacted me more. The flushes are mild but are more frequent - about 10-12 a day.

My energy levels were impacted badly, and have recovered slowly - the pnuemonia didn't help and really knocked me back. I would say I am at about 70% of my previous level of stamina, but I do sometimes get sudden incidents of fatigue and brain fog, but less than I did a couple of months ago.

PSA currently 0.03 and they say undetectable, so it's hopeful, but I've seen too many other people where it went away and came back to be complacent.

I'm just happy that I'm here, and that the impact on my life is far, far less than it could have been.

Bob

Calahonda52

Bob,

Thank you so much for posting this unedited description of the ray gun sessions.

As for the 0.03, here are my nerdy numbers, having been zero from the surgery in May 2016 so didn't make the 5 years

Am going to get tested annually for the next one