My Journey through HT and RT

You are absolutely right about having same appointment times. Decho. Mine were at different times just about every day. I quickly discovered that what's in your stomach makes a big difference on how quickly water passes through your system. One appointment was immediately after lunch and I ended up missing my a slot because my bladder wasn't filling. On other occasions I was having to let some out before I got in the treatment room and on one occasion my bladder gave way on the table. I'm sure on lot of this bladder anxiety could be avoided by having a set time every day.

All the best for the rest of the week Decho. Last week I went to a getting started with radiotherapy session with a radiographer at Maggie's in Cardiff. I asked about bladder level and movement and he said I would be having a cone CT scan each time and they can constantly see if the rectum is inflating because of gas or is not empty. As you were told, the machine will stop if the target area is moved too much.  Thanks again for all the tips and updates.

Ian

Thanks so much, I do really feel good. I’m just back from the men’s cancer support group where I always cheer them up. Being positive is so important in getting through this.

Sorry to spoil your party with regards to testosterone….I thought the same and then all of a sudden BANG!🤣🤣🤣 but not everybody’s the same so you might be lucky.🤞🤞🤞

At least though unlike having RP you’ll probably not get frustrated as like me, you’ll probably feel more like having a cup of tea….and I never, ever thought I would hear myself saying THAT!

Still can have a lot of pleasure though if you learn to adapt to new ways of doing things😉

Hi Decho

My OH is due to start RT early June and we have found your posts so useful.  Thank you for taking the time to explain the treatment as we now know what to expect which certainly has helped our stress levels.  Best wishes

One week on since the end of RT and things going generally well although I’m feeling a bit neglected by the NHS when it comes to aftercare. Last Saturday I started to get a real stinging pain when having a bowel movement. It felt a bit like haemorrhoids but I had an operation a long time ago which meant I shouldn’t get these….and there were no signs of them, so I assume it might be a bit of damage by radiation. I knew from the many hours I’ve spent on this wonderful forum that this was quite a common side effect and that anusol can help. I managed to get a hold of some but didn’t use it until I had checked with my CNS. She confirmed it was ok to use it and that I should consult with my GP for any issues with side effects - this surprised me a bit I have to say as I thought they were specialists there to help?
Anyway I started using the cream and it did help, so I went to my local chemist to see if they could prescribe for me as I needed some more, however they said I would need to get the prescription from my GP! I asked if I could buy some but she said No, as it wasn’t for haemorrhoids! I tried to explain it to her but she wasnt interested….she didn’t even consult the pharmacist! And you can buy it off the shelves in Asda no questions asked!

So, off to my GP surgery to see if I could get a telephone appointment with my GP- I always go in person as getting through on the phone is never easy.  Yes, we can do that…2nd June!!! Well that’s not much good😟 normally when you mention the ‘C’ word you get an appointment same day but this rather snooty receptionist was having none of it! I explained to her that I was having side effects that needed attention so she said I should send an email for the attention of my GP. Anyway I did that on Wednesday and so far haven’t heard a dicky bird!. I know they are busy but this is all very disappointing. A trip to my local Asda sorted the issue, but there are other things I want to discuss with my GP, especially about my wonky penis(as my wife calls it🤣🤣)

anyway the stinging is much better, still there a little and using the cream. Energy levels still good, been out twice on my ebike this week for 3 hour cycles(with coffee stops😊). This afternoon I’ve been out shovelling topsoil and now I am resting. Still managing my 10k+ steps most days and feeling good, although I was wiped out on Monday, kept falling asleep…mind you the weather was awful so I didn’t get much exercise.

I’m getting more confident now about my bowel urges…they only occur in the morning and I can now control them a bit better until I get to a toilet. I do still carry an emergency kit in the car but have never needed it. Today I was away out all morning and this was the first day I didn’t need to wear a pad. I’ve been wearing Attend F6 in the morning when out and about just to give me that reassurance that I wouldn’t embarrass myself if I had an accident…..they seem very secure although I have never actually tested them out for real!

So, I’m off to Fuerteventura a week tomorrow and can’t wait. I feel confident that I won’t have issues on the 4.5 hour flight as it’s in the afternoon.

got a busy weekend looking after our 2 grandsons, 7 and 9 and they always bring me joy and happiness!😊

I’ll update you again, next Friday, have a good weekend!

Here we go😊

Spare Pad, nickers and shorts….I always wear shorts from 1st April although it’s been damned cold in Scotland.
Pee bottle, bought mine from Amazon,
Towel for use with the above in case you need to use it and don’t want passing buses watching you🤣🤣
Toilet paper and wet wipes.
Waterproof mat for my car seat just in case I need to use it

Only used the bottle once on return from Edinburgh…TBH I think just having it there keeps my mind off having an accident!

Hi Derek

I agree that once you have finished RT the hospital does rather lose interest and relies on 6 mo PSA and testosterone tests. If PSA remains low then OK, if not we will see you. Although I had no pain I had several episodes of blood in poo up to 6 mo after finishing RT. Mentioned this to my CNS nurse who was pretty prompt in referring me to colorectal. Again swift response and had a colonoscopy. Two small areas of radiation proctitis found which did not require treatment but 3 colonic polyps found and removed. I think the current interest in bowel cancer may have concentrated minds!

Still feel a wreck most of the time with fatigue  achey muscles and joints, no libido. I hope things will I.prove if my T returns to normal. Next bloods in June. Fingers crossed.

Considering that I finished zolly last Sept, it's effects are dragging on. If more people realised how awful it can make you feel perhaps they would not have it, although the alternative is certainly worse!

Pleased you are getting on OK despite the bowel problem.

Good luck to us all.

Peternigel