Radiotherapy worried about the side effects

Lagrange,

I can imagine the side effects of Chemo would be worse than the Radiation treatment.

Last year I started Hormones and 20 fractions of VMAT Radiation, it was the fatigue that got me the most, and with my stream going down to a trickle.  I kept working all the way through, I was determined to do it (didn't think I would though).

Some of the men I have met didn't get any fatigue, we are all different and all depends on the Radiographers and how hard their job is.

Take it easy, one day at a time.  I could walk to work and in the end it took me 30 minutes to walk a 5 minute walk.

Take care.

Hello Steve,

Thank you for replying, each persons experience is going to be unique , To be honest it's the potential lack of dignity, using pads etc which scares me the most.   Just have to wait and see.  Sounds like you are on the right side of things well done

kindest regards

Marty

I had a prosectomy and then RT (both this year) I was worried about incontinence after RT.  It didnt happen! I did have bad bowel problems which has taken weeks to correct. I was also very tired. TBH I recovered faster from the op than RT. 

Marty,

The most embarrassing thing for me was the initial asking for them.  I had to get a reference from my doctor for a district nurse, then get a reference from her for the "Incontinence Clinic", then contact them and explain why I needed the pads.

This was all when I couldn't open up to anyone and was 'in a bad place ' a lot of the time.  I was thinking that I was the only one.

If it was now, it wouldn't phase me at all.  Talking with other Prostate Cancer sufferers (sorry if that's not the right word to use) really does help.

It wasn't really a lack of dignity, it was a necessity.  Even if I didn't use the pad, it was peace of mind knowing that if I did, I wouldn't embarrass myself totally.

These pads I got from the Incontinence Clinic would have fitted a horse, the size of them.

I had to get new boxers tight on the legs so the pad would stay in place, otherwise they would drop.

Looking back I can smile now.  I always had a couple of spares in my 'work bag' complete with 'nappy sacks '.

Every night in bed I would like on a couple of pads just in case.

There are so many things on the market for Incontinence, some really good reusable boxers, wish I had known about them then.  A bit like cycle shorts but with the padding in the front.

I go to a monthly Prostate Cancer Support Group meeting at my local Maggie's in Newcastle.  I wish it had been on last year as talking about things with others in the same boat is comforting.

Do you have a fob from Macmillan to say that you need to use the toilet?  They're useful.  You can get them off the website or at the hospital.  Also I have a Radar key for the disabled toilet.  It's little things like that to make our situations a bit easier.

Hope this helped.

I meant to send it yesterday but forgot to press reply.

Hi Lagrange,

I have had in 2 x 10 sessions of radiotherapy. On both occasions I was off sick so had no need to tell my employer. However what I found with the sessions were that it takes about 5 minutes for the actual treatment. The waiting part is when it becomes a challenge. The second time, I had to drink a certain amount of water. Getting to this level was time consuming for me as I just could get enough water in me, the longest waiting I had was around 3 hours. Everyone I met in the waiting area who needed water couldn't get it right either and we were just collectively moaning about it! My first sessions didn't involve water but I still had to wait upto an hour to get the treatment. I think you would need to speak to your employer to see if they would agree some flexibility as from my experience I had no control over when my appointment would be due to the radiographers side of things. On both occasions I never met anyone else who got their treatment on the time they were meant to get done and had to wait longer.

I experienced no changes afterwards that I know of. I do have a lot of fatigue but I don't think the radiotherapy had anything to do with it. 

All the best with your treatment.

Hi Lagrange

My experience was similar to Steve's- the fatigue was the worst side effect.

I was fortunate, in that I had retired but , for me, I'm not sure I could have gone back to work afterwards, as all I felt I could do was crash on the sofa. That said we are all different.

Whilst the actual RT takes minutes, there is a lot of waiting around, particularly if the machine breaks down. Most of my sessions (37) were mid morning , so with 45 mins travel time plus the time in the hospital using the enema, drinking 600ml of water etc, I was never back home before lunch.

My only other thoughts are, take great care with your diet  and follow the diet sheet they should offer ( ask if they dont) - not funny if you don't.

Hope the above helps

Regards

Stuart 

It can be annoying waiting for your appointment.  You take your enema on time, do the do, drink the water and try to keep it in.

Then there's a delay in your appointment time.  Try telling that to your bladder!!

Just persevere, it's worth it in the end.

Hi Steve,

Thank you for the practical tips , I will certainly get a Macmillan fob  and a Radar Key, your thoughts on incontinence products made me smile.  I cannot believe I am now in the market for such things  it's come as a bit of a shock, I will just have to get over myself and get on with it  Once again thanks

regards   Marty

Hi Donchadh,

Thank you for your reply, I have just finished 5 months of chemo  and my experience of appointments sounds very much like yours, I soon found you have to be in the right frame of mind and be flexible as waiting times varied enormously.   Having a good book with a least 200 pages left to read  helps...

Cheers

Marty

HI Stuart,

Thank you for your advice, I have read the diet sheet and will follow it as best I can.  There is so much to take in

take care

Cheers

Marty