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An experience of salvage RT

User
Posted 25 Jun 2016 at 16:20
Since having RALP in August 2015 my PSA readings suggested that further salvage treatment was needed and so we decided to go with RT. Although I am an optimist and pretty pragmatic I was apprehensive about the whole treatment process and so came back to this site to get more information from the experience of others. Armed with this information plus more from the medical team I made my plans. Trusty rucksack with incontinence pads to contain both bladder or bowel emergencies;spare pants,spare trousers;wet wipes;antiseptic gel; disposable bags;enemas supplied by hospital;lubricant for enema tubes and Sudacrem. The rucksack was actually quite small. Although the hospital supplied a free parking ticket,parking spaces were limited and I was warned it could take an hour to find an available space.I decided to drive a little bit further to the Park and Ride where there was a bus every 20mins to the hospital and it was only a 12min bus ride. Parking was £2 for 11 hours and I have my Concessionary bus pass.There are also toilets at the Park and Ride site as well as a refreshment bar.This also left Hospital parking spaces for those whose need was greater than mine. Had sussed out toilet opportunities along the 47 miles to the Park and ride site.First day of RT travel arrangements all good and arrived at hospital 90 minutes before appointment.Take out instructions from Hospital.One hour before appointment, drink 2 cups of water and then after about 10 minster go to the toilet and insert enema to empty lower bowel.Now I have to admit that carrying out the act was not a problem but this can entail the emission of some rather unpleasant sound effects and when the toilets are located close to the waiting room and the reception area I did find this and tad embarrassing. I know that thereverything were many of us in the same boat but I took no comfort from this answers scoured the hospital for a more remote location. I found one and never whispered a word about it to anyone. Every day it was empty when I arrived - bliss.Having dutifully evacuated the lower bowel it was back to reception to check the traffic light system to see if my machine was running on time.If it was then sit and chat to new friends until 30mins before appointment,then use the barcoded card I had been given to check in on the computer system. Confirm the details shown of name,time and machine number. Stroll down to the waiting area for my machire and drink 4 cups of water in quick succession to fill the bladder.My bladder and I are on good speaking terms since RALP so I quickly learned that this part is the trickiest with RT.A full bladder means less risk of it being damaged but being in pain from a full bladder when trying to lie motionless for 5mins during treatment is not a good mix. If the bladder is uncomfortable tell the radiograther before you are due and they will advise you what to do.You soon learn how quickly your bladder fills and learn to adjust the timing of your intake. One of the team come and fetch you,introductions done, walk on through, shoes off, trousers off hop onto the bed. Name and date of birth, describe what part of your anatomy you are expecting us to treat.All confirmed and agreed.Ask them about psoriasis on my back and show the medictionary I use.Confirm the OK to continue using it. Shirt up,pants readjusted so they are not in the waye of machine.Main lights turned out so that they can line up green laser with tattoos and then two of the team peering intently at this area and rattling of numbers which are being confirmed by a third member of the team. You feel the bed adjusting by millimetres. The main lights come back on and someone says that we will leave you now but if you need us we are watching so just raise you hand. You lie motionless as bits of equipment slowly move around you and then stop. You hear a bleeping which continued for about 23 seconds and then stopped. The machine repositioned, another 25 seconds of bleeping and then stopped.It did this 5 times in total after which one of the team appeared and confirmed that was it for today. Off the bed, trousers on, shoes on, thanks very much see you tomorrow.Walk cross legged to toilet, empty bladder,say cheerio to new found friends in waiting room, catch bus, get car and drive 47 miles back home. As the days progressed I was waiting for the side effects of bladder and bowel problems to cause me problems while driving to and from the hospital but in my case it never happened. I had a wee before leaving home,an hour and ten minutes later at the Park and ride and at the hospitalk and in the reverse order on the way home. During the last 10 days of treatment I had diarrhoea about an hour after eating an evening meal on 5 occasions but was fine the following morning having then eaten 2 digestive biscuits and a piece of dry toast. I kept well hydrated and did not have to get up in the night at all.There were a couple of days when the bottom started to feel a bit sore but a dollop of Sudacrem stopped that in its tracks. Psoriasis is as smooth as a babies bump. After 6 weeks I was tired when I got home but was able to sleep well at night so was OK to carry on again the next morning.

I completed my treatment last Thursday and I got away with no problems thanks to all of the advice I picked up from reading different snippets of posts from you good folk on this site. Knowing that I was prepared for the myriad problems that some of you guys encountered helped me to avoid them so thanks so much.I realise that this is only my experience but I hope that it might offer some reassurance to others who are as apprehensive about their forthcoming salvage RT as I was.

All the best to everyone

Kevan

User
Posted 25 Jun 2016 at 19:58

Great description. John also breezed through but with the benefit of only having to drive 3 miles to the hospital and then straight on to the office, another 3 miles. A 90 mile round trip sounds awful!

Fingers crossed your PSA drops and then stays undetectable for the rest of your life

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jun 2016 at 20:16
Thanks Lynn. I have very much appreciated your input since joining this site and from all of the ladies on here as you have a wealth of knowledge that is willingly shared.

You all have your own problems to deal with which are more serious than mine so thank you all, once again.

Kind regards,

Kevan

User
Posted 26 Jun 2016 at 08:20
K

Thank you for your very descriptive post, on pessimistic days I feel I maybe heading towards salvage RT and your account is really useful.

Thanks Chris

User
Posted 17 Aug 2016 at 22:01
Kevan,

I was pleased to find this- my OH has just found out today he's likely to need salvage RT. Scans first, and if all clear RT to follow.

Are you still symptom free?

Any advice for us?

Louise

User
Posted 18 Aug 2016 at 08:42

Hi Louise. I had adjuvant RT 6 months after my op in Aug/Sept 2013 and fortunately still symptom free.
I think Kevan has described it as it is. I would say if you are travelling far pick a route with possible pit stops as there can be urgency.

I also breezed through the RT and went straight to work after each session.

Good luck
Bri

User
Posted 18 Aug 2016 at 09:07
Hi Louise

I have replied to your P.M.but in answer to your question I have an appointment with the onco on 19th September to get some results. I feel good with no bladder or bowel problems but with the caveat that things have never been exactly as they were pre op but only in as much as I feel more aware of my bladder. Possibly that may not make much sense but I don't know how else to describe it. However, this is just the new norm and it is not a problem. The important thing is that so far the RT has not affected my bladder control at all. I am sure this is the bit your OH is concerned about. I would stress that this is just me and it might be different for your OH.I would say that when I was talking to radiology staff when having tattoos done I was chatting about my concerns regarding continence issues and they appeared to surprised that I thought it would be almost a foregone conclusion. Their response seemed to suggest that these days most people were OK but there were a minority who had problems.

Hope all goes well.

Kevan

User
Posted 18 Aug 2016 at 20:04

I think men that have IMRT are much less likely to have bladder and bowel problems than men that have the older EBRT. As in almost everything else to do with this disease, treatments are improving all the time but there is a postcode lottery regarding whether those improved treatments are available to you :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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