Radiotherapy

Hi Rens, I think the end of radiotherapy might be in sight now?  You have perfectly summed up my husband’s experiences ( Feb- March 2023). I found the driving and the sheer anxiety very stressful, too. Fingers crossed all is well!

Hi yes my husband had extensive RT to throat 4 years ago - it was SO hard. Now 81 and diagnosed with PC with no symptoms or spread, he has decided to refuse RT - rightly or wrongly I support his decision.

Good luck!

Hello Rens. I finished 6 weeks of R. T. in December 2021. Not long after I was bleeding from the rectum. Took 8 months to finally see a gastorolgist consultant who diagnosed radiation proctopathy.By that time I was desperate, made life very restrictive. He suggested a new treatment of 4 sigmoidoscopies 4 weeks apart with Purastst inserted. Have had 2 so far. Bleeding still evident but is lessening. I also enrolled on the Colo-Spirit research programme carried out by Newcastle University. 

Dear BoroG 

Sorry to hear that but I am honestly not surprised. Although the staff in my hospital are nice people, the process does seem haphazard with plenty of room for error. I proceed with hope for the best but fear the worst. They explained to me that in order to ensure coverage of the whole prostate they have a barrier that extends beyond the prostate. The oncologist said that some of this is fat. I sat in silence thinking how imperfect this process is. 

Good luck

Rens

Hi Rens

My partner is about to have radiotherapy at the end of this month, I've just read this to him as prep. We've both been really worried about the preciseness, but he has now been told that he will have his whole pelvis area and nodes done as well as they suspect metastatic spread. Ironically, I guess there's now no worry about it slipping over any line, but the "collateral damage" as you say is something to fear. I did ask the consultant about becoming doubly incontinent afterwards and he said there was a 1% chance and it was rare, so hopefully you should be fine in that area.  Can I ask you if you have driven yourself to the appointments? my partner is insistant that he can drive himself as it will be 30 minutes away, I'm not so sure, what do you think? I feel that I should be there for support at the very least and am more than happy to drive.  I am so appreciative of your feedback of your journey with radiotherapy,  please keep sharing with how you are doing and feeling. It really is the best information.

Best wishes to you 

L

Hi L, I obviously don’t know your husband or your circumstances. My husband said he could drive himself but I wasn’t confident about letting him do that! He got very stressed ( so did I) before the radiotherapy and seemed very preoccupied and not ‘on the ball’ as far as driving goes. . The queues to get into the hospital car park could be up to an hour! I did most of the driving, dropped him off at the hospital and waited in a local supermarket car park. He would phone me when he was done and I would drive to the hospital to pick him up. The drive to the hospital was across the city and could take anything from 45 mins to 2 hours depending on traffic. My daughter did 5 sessions of driving to help me out. My husband got very tired towards the end of the radiotherapy.

also, just to warn you…..you have all the visits to hospital for diagnostics, then the radiotherapy and then, all of a sudden, nothing! Just go away and have a PSA test followed by telephone consultation in 3 months. It all felt very strange for the first couple of weeks after the radiotherapy! Like pedalling a bike without stabilisers for the first time!

hth

Thanks and Good Luck. Yes I don't want to be negative but it is my journey and it is how i feel. I am pleased that you found it useful. I have received great support from individuals on this site.

My wife accompanies me and also drives. It's great to have her with me. I would advise against driving as although I have not as yet experienced it, I know others have reported an urgent need to pee and I have purchased on the advice of others a urinal bottle. It even glows in the dark. 

My strongest advice is to adhere to the diet. I have a routine I get up at half six and do my 10,000 steps before a light breakfast. I do find that emptying my bowel every morning does require some help. Others don't seem to have had this problem but the recommended diet I follow lacks fibre.

I have really struggled to hold water. My most exasperating experience has been that my bladder has ranged in fullness from 60% to 100% before treatment has commenced. If it's low they make me wait and then do another scan before proceeding.

I know that others have only had to drink 600ml and wait thirty minutes. In my case it's 60 minutes. What I find odd are two things: first, no one else in my broad reading seems to report problems with the bladder. More significantly, if my bladder periodically fails to fill after 60 minutes then how does everyone else manage to achieve this after 30 minutes. Perhaps I am not the sharpest knife in the drawer but I would love someone to explain this. I am now resorting to putting some salt into the bottle in the hope that I can retain the water better. I am only 62 but I feel that I have aged. 

Rens

Hi Rens, 

I don’t think you are negative at all, this is information that I want to hear and I’m very grateful that you have taken the time to share your experience. Everything helps and the more information I can get the better.  Hopefully this will be all behind you soon and you can get back to normality . 

Hi, Thank you, great advice. My partner is really capable and strong, but I’m defiantly determined to wrestle those car keys out of his hands now. 

Hi

I drove myself everyday - 6 miles and 45 mins  took as long as someone else coming from 30 miles away!. My biggest fear was being 'caught short' on the journey. I sussed out any toilets I could use on the trip and also got hold of the Macmillan card I could hand to anyone to explain my predicament. Never had to use either. 

I might be wrong but it seems others are emptying their bowels and loading up with water before getting to the hospital.  This isnt how most of my cohort went though the process. We used the enema in the hospital and drank ( in my case) 600mm of water again in the hospital.

Regards

Stuart