Radiotherapy anxiety

Hi Nikiknitter

I had 25 sessions of external pelvic radiotherapy for endometrial cancer in 2022.

I also felt similar- I would feel panicky and trapped. It's not unusual. I think also the anxiety is compounded with feeling that you may have an accident. I don't know if yours is any different but I used to have to drink 3 cups of water and wait for 30 minutes and have the treatment with a full bladder. I did always manage to hold on, but if there was any delays, it was hard. 

I spoke to the radiotherapists doing my treatment and told them my worries and it really helped. They talked to me throughout my treatment and played music. Just having someone tell you what was happening and when helped. So they would say things like- well done- you are in a great position, we are just checking your scan, the machine is going to make a sound, its going to start moving etc- that really helped. As soon as the treatment was done- it was like- well done, thats another one off the list, I'm coming now etc. 

Just telling them how you feel and getting the reassurance will help. I am sure also people do have accidents and for them it is no big deal. 

Hope this helps- you are not alone- a lot of people find the machines tough. 

Jane

Hi Nikiknitter You’ve had a lovely reply from Jane and I just wondered if it would be worth asking for as early an appointment as possible? I also had to have a full bladder and if they were running behind then it got quite stressful trying not to go to the toilet? If you had an early appointment then hopefully there could be less of a delay. I was given 5 weeks worth of appointments early on but they were happy to change them to earlier ones

Take care

Karen x

Hi Nikiknitter 

I struggled hugely with needing a full badder during radiotherapy for my cervical cancer, so you are not alone! I have had accidents, and yes they’ve seen it all before. My nurses kept some spare jogging bottoms in the room for this kind of eventuality and assured me it was ok, and they dealt with this often.

I used bladder incontinence pads in my knickers and always took a change of clothing in my bag, which helped me knowing that if I had an accident I could cope with it. I think the anxiety around the whole treatment doesn’t help either-especially if things are delayed, which happened often for me, meaning I’d have to go to the loo and then start the drinking again which meant things took even longer. 

If you are able to get appointments early in the day, that could be very useful for you and hopefully help with any delays in the department.

Sarah xx

I always closed my eyes throughout the radiotherapy and actively focused on happy thoughts. I have had loads of radiotherapy and scans and I got this down to a fine art so they really don't bother me any more. Its a really simple tactic but it really does work for me so maybe it will for you

Thank you for your reply.  It’s nice to know that I’m not the only one who worries about their bladder! I think I will speak to the radiotherapists and ask if I can keep my headphones in so I have something to listen too. My first treatment was terrible as I had to wait 2.5 hours for treatment. I had to go for a wee after an hour and then start drinking again by the time I was finally called my bladder was so full I was sweating and had palpitations. I think this started me off on a mega worry track.  

Thank you. I feel foolish worrying about something so trivial in the grand scheme of things but I guess as you say they have seen it all. Perhaps I’ll invest in some incontinence knickers just for reassurance . 

I found it very helpful to wear the pads I wore. I don’t see your worry as trivial at all-I absolutely dreaded radiotherapy and the accompanying uncontrollable diarrhoea, and worries about any kind of accident were very real for me from about week 3 onwards. A friend I made ant chemo going through the same treatment had accidents on the table too, but the nurses were lovely and very reassuring about it. After 32 sessions I was delighted that I would never be there again! 

Sarah xx

Ok so today was a bit better. I had a long wait between my chemo appointment and radiotherapy but I but my headphones on and got my knitting out.  When they called me my bladder was not full enough t I knew this was the case as I had not long been to the loo.  The chap before me was also sent out to drink more. I took it easy drinking as I knew my bladder would fill up quickly and when they caed me 45 mins later my bladder was full. I kept my headphones on in the machine and kept thinking of myself as a warrior and the treatment passed with only mild panicky feelings.  I have a morning appointment tomorrow so hopefully with will help as I won’t have the day  to stress. Xx

Please tell the radiologists about your anxiety whilst in the machine, they have seen everything and they are very knowledgeable. They have help for this, don't suffer in silence, please le them know. A few people had stress toys to help them during their radiology treatment.

It's hard, I found it got better as I got used to what was needed and how long I needed a full bladder for. The weekly reviews were really good for saying how it was.  
Also the peeps in the waiting area were all in the same place and the banter was really helpful for all of us.   We all failed the bladder test from time to time, the gas test - everything.   There were always delays of over an hour.
The RT team were easy to talk to, so tell them how you feel.  I also had a massive pad in my pants to cope with any unwelcome things - the travel to each session and back was 50 mins,  and the team didn't bat an eye, just understood.     I had to totally zone out during RT, and I knew that I only had to last about 2 songs being played and then I could rush to the loo.
The worst thing that happened to me was the fire alarm going off - just as they'd lined me up and were ready to zap.  No time to go to the loo due to the evacuation!      I survived!  

The chemo RT worked for me. 
You are over half way now, I hope you have found your way to cope with it.    Counting down the days from half way is so good.  Also, chocolate hobnobs for the RT team are a must!  

Zx