Hello from a PC patient

[WeeFella]

Good morning, I just thought I would introduce myself.

I'm Phil, I'm 58 ad live in Gods country, otherwise known as Bonnie Scotland. I discovered I had Prostate cancer after I had a back ache. My nurse was really good, so asked if I had PC in my family. I told her that both Dads Brother and Mums brother both have it, She booked me a PSA test, and so started the journey. I chose Hormone therapy alongside Radiotherapy, with 20 sessions over 4 weeks at the Beatson in North Lanarkshire. My last session was on the 28th October, with a follow up blood test the first week of January. I got the all clear, with a PSA of only 0.04. Its been stable at that for the last 3 tests, with another due this June. I thought that would be it, I was clear and all my problems were gone!

Since then I have had two colonoscopies and an endoscopy, discovering that I had radiation proctitis. I currently have a flare up, partially incontinent for a week now. I have also discovered after some Xrays, that I have osteoarthritis in both my hips and my spine, L1 S5 joint. I'm constantly in pain or great discomfort. I'm really depressed, although I now have help for that. I'm really trying to be strong, but just cant seem to get a break.

I don't have a Pelvic Radiation disease diagnosis, but I'm thinking that the proctitis is that, isn't it? or am I mistaken.

I am now registered disabled, have a blue badge, a radar key and get just over £400 every 4 weeks in disability living allowance. I'm really worried about the cuts coming for disability, just as I start to move twards being medically retred from work. I was told yesterday that my hours are to be cut by 20%, doing 4 days instead of 5. I'm actually quite relieved, as I thought they may let me go.

That was a bit ranty, sorry about that. Im looking forward to hearing other peoples experiences and how they deal with them. Happy to be here.

Kind regards

Phil

[Jimbo65]

Hi Phil,Sadly it sounds like your treatment has caused your issue. See if you can find a late effects clinic. Not sure if there are any in Scotland. Keeping moving is really important. Ask your GP to help with pain management. You're probably looking at hip replacement at some point. Do take imodium and paracetamol. Ask about other pain relief you can take that doesn't upset the tum. Get a man bag to have with you when you're out and about. I can recommend modibod underwear which I use with a pad. Gives me confidence when I'm out and might get caught short. It has happened! Keep pestering for referral to gastro and urology as they know more about radiation damage these days. Good luck and keep strong. Xx

[Sunflower1976]

Hi Phil

Sounds like you’ve had quite the experience and been though soo much.

It’s definitely hard going some days good and you feel hope then bang you get hit with a bad week.

The pain management sounds like you’re biggest battle as it’s so hard to dunk ton normally while in agony. Are you attending a late effects clinic near you? They are super I got referred and finally got my PRD diagnosis and also see a pelvic PT that has been amazing.

This group is soo helpful as we are all in the same boat everyone on here genuinely gets the suffering as we are all dealing with it in some form.

I understand these new cuts are worrying. I try to take it one day at a time (hard to do I know) worrying about tomorrow would just send my anxiety through the roof.

Never apologise for ranting I think we should be given a free pass to rant after what we have been though.

Don’t feel alone there are soo many people on here to chat with ask questions to and most of all happy to hear anyone’s rant 🤪

I’m not sure I helped with anything there but just wanted to say Hi and welcome 🙏🏼

[Lamados1954]

Hi Phil nice to meet you all on here are going through difficulties one way or another caused mainly from diagnosis and treatment it’s good to be in touch with people who understand . We know we have PRD even without drs acknowledging this as mine hasn’t in my experience there seems to be a lack of understanding of PRD even though I have been complaining of problems at my checkups not one health care prof has explained how common this is post treatment or given any advice on how to cope As you are under pensionable age you would be entitled to PIP this is not means tested I am sure with your health problems you would have no trouble getting this . Unfortunately I was over pension age so not entitled to PIP if I had known this I would have applied before as I have severe oesteoarthritis in my spine hips and knees diagnosed prior to cancer . Treatment has caused a fracture in my lumber spine . It’s so miserable trying to cope with the after affects of treatment that it does affect mood and mental health . Plus with cancer sufferers it’s common to develop health anxiety which I struggle with and have to give myself a firm talking to !! If I’m having a particularly bad day I really try to occupy my mind to block out negative thought . I hope you find this group helpful and you are feeling better I am from Wales a fellow Celt ❤️