6 Months on and we’re making some progress 🌞🌞

Having found a Late Side Effects clinic thanks to this site around November 2023 I am so pleased with where I’m at.

I’ve had the ‘poo’ tests done. There is nothing showing there. No IBS or IBD.

I’ve had my kidneys scanned. Some scarring but no damage and fully functional.

I’ve had my bladder function tested. All good but some lesions and scarring. Still having the AluRil bladder washes but we’re down to 3 monthly. Am taking Mirabegron 25mg at the moment to alleviate the incontinence and urgency which fingers crossed is having the desired effect 80% of the time. They may increase it but because of the chances of high blood pressure not sure I’ll take the risk of a higher dose. Still taking D Mannose and Hiprex. All in all the UTI’s are pretty much non existent for now. So I’m really pleased.

The bowel issues are still there but more manageable since the Imodium dispersible which have really been a game changer if I’m out for a meal. Still having to watch the intake of fibre and we plan our meals each week. Pain in the butt (no pun intended) but actually we have less food wastage so win win really.

Today I’ve had my second nuclear PET scan to see whether my body is absorbing the nutrients from my food. Results to consultant within the next 48 hours.

I am so happy that my Late Side Effects clinic have been so supportive and speedy in seeing me and arranging these tests. My radiologist and nurse there are so lovely and kind and understanding.

8 years of my researching and demanding to be heard has really paid off for me and I positively encourage anyone who is struggling with long term late side effects from chemoradiotherapy to keep going. Speak to your doctors or contact the PRDA organisation or MacMillan nurse and ask for help. The more of us surviving cancer the more help is needed with these long term side effects. It’s on its way and there is more help available than there was even 5 years ago.

Have a good day everyone and I wish you all good health 🌞

[Jimbo65]

Woohoo! So glad you found a LE clinic. All sounds really positive for you. I'm kind of where you are. Although I'm self catheterizating because bladder will not completely empty. Bowels still under investigation as can't seem to pinpoint what causes my diarrhea issues. Onwards and upwards though. 👏

[technobabe in reply to Jimbo65]

Hi Jimno65, I have had diarrhea issues since receiving radiation therapy many years ago. I know that it is connected to eating fats or chilli/spicy food. I've tried many things so that at least I can eat outside home without being terrified. Every now and then I trial various things. Most successful has been having metamucil in very little water so it becomes like sludge. Also packets of Questran Lite which are supposed to absorb bile acids. Have also tried other things but not had any success. I can eat anything other than fatty food and chilli.

[Bangersandmash]

that is really brilliant, so pleased for you

[Gingerurgent]

I’ve found there are no late effects clinics or similar support in the North East of England.

My Oncologist will only start an investigation when there is “blood in the poo”

MacMillan at the centre in the Friaridge Hospital in Northallerton hadn’t even heard of them.

[Bluebell86 in reply to Gingerurgent]

I’m so sorry to hear there does not appear to be any help for you in the north. Your oncologist is probably only concerned with doing investigations to rule out cancer rather than supporting you with ongoing issues from the radiation as that is their remit. I suggest you ask for a referral to gastroenterologist or urologist depending on the nature of your symptoms and request a referral to a specialist if you are willing and able to travel. Don’t suffer. It’s terrible that you get left to it.

[BlueButterfly4 in reply to Gingerurgent]

Also from the north east and no there is no such clinics. However, if you contact the late effects clinic based in Bath hospital and ask to speak to a wonderful lady called Jane Cook I'm sure they can help. They have been fantastic with me.

[Gingerurgent in reply to BlueButterfly4]

Thanks for the contact information, I’ll definitely try them on Monday.

It’s amazing but not really surprising that there is no follow up. Passing the radio treatment record to your GP seems like passing the buck…….lol.

Hormone side effect follow up consists of acupuncture even though it’s a holding treatment for probable further oncology down the line.

“You’re lucky, mustn’t grumble” isn’t part of my nature I’m afraid.

Thanks for you’re help and attention

Gavi.

[BlueButterfly4 in reply to Gingerurgent]

Contact information x

Contact information for Jane Cook, Late Effects Rehabilitation Service. Bath

[Gingerurgent in reply to BlueButterfly4]

Brilliant, thanks so much.

Gavin

[Bluebell86]

Thank you so much for sharing, it is so lovely to hear that patients symptoms are being fully looked into and investigated and it’s reassuring for others. I just wish it was universally available to all around the country/world. It seems to be a postcode lottery which is sad. I live in Devon and we do now have a late effects service but it is in the pilot stage at the moment due to end this summer so not a commissioned service yet. Guess these decisions come down to funding from individual trusts. I read on a document on the PRDA.org.uk that patients should be referred to specialist centres for complex complications so I asked my gastroenterologist to refer me to St Marks Bowel hospital in London so I am awaiting that referral. Really hoping they can offer some help as my hospital have told me there is nothing more medicinal they can try and surgery is the only route but can’t guarantee it will resolve my symptoms. My local hospital have only performed one operation in a patient with PR disease in the same areas of the bowel as mine so I feel I need specialist help. It’s taken me 10 years of my own research to be able to get to this point. My advice would be keep on and on and on at your local hospital about how your condition affects your quality of life. Thanks again for sharing such positive news, so pleased you are getting the help you deserve.

[AlfredSaxon]

Good news keep moving forward