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Cheshire Chris's Treatment Thread

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User
Posted 10 Feb 2019 at 08:48
RT starts tomorrow. 32 fractions at 11:45 every day at Clatterbridge. I must admit that I'm a little stressed about the possible side-effects, but I know that I need to just get through it and accept whatever comes my way. Clatterbridge is a specialist cancer centre, and I know I'm in good hands. All the same, knowing all that doesn't take away the nervousness!

Oh well...

Chris
User
Posted 10 Feb 2019 at 09:08

Hi Chris


You are an amazing guy who has faced up to and got through some pretty tough stuff. A new treatment is bound to make you apprehensive but you will deal with it because you need to. I read up on the worst things that could happen and went prepared but  I got chatting to others who were there for all different reasons and as each day passed I felt more in control. For me the treatment over 33 days passed without incident as I hope it will for you.


Very best wishes,


Kevan 

User
Posted 10 Feb 2019 at 09:43
like any treatment it is a range of outcomes. I had very little in terms of side effects for surgery and rt apart from mild ED. Sine I recurred I would have swapped the recurrence nice for more sided effect mind you!!
User
Posted 10 Feb 2019 at 10:30

Chris, i felt exactly as you when i was due to start my RT.  Remember what I told you in a previous post you will soon get to know who is in your club once you see people disappearing into the loos and drinking water if that is part of your preparation.  I would be interested to know how they are treating you if you wouldn’t mind saying I hope you get ultrasound supported radiotherapy like guided as it makes it a lot more accurate and reduces collateral damage.  I do agree that it would’ve been better if you had had the rectal spacer.  I am now five months out of my radiotherapy  fractions, the diarrhoea has disappeared and I still get the mucus discharge daily.  I was told that the radiotherapy can unavoidably damage the nerves surrounding the prostate that facilitate erections.  This has happened in my case, but is slowly getting better And I am using a vacuum device a few times a week to limit penile atrophy and I’m hoping I can get back to normal six months after I stop hormone therapy in October.


all the best for tomorrow 


alan

User
Posted 10 Feb 2019 at 11:42
Hi Alan,

Thanks (and others, too) for the supportive words.

My understanding of the RT machines at Clatterbridge is that they have a built-in CT scanner to properly align the patient with the scanner and to check for the proper state of the bowel and bladder. I'm told that they are the very latest technology, so I think that there should be as little collateral damage as is feasible.

I was surprised, when I went for my planning session, to be told that, because I'm a private patient (funded by work medical insurance) I'll be having my RT in a private RT suite that's completely separate from the main hospital's facilities. Shouldn't make any difference at all to the treatment, but at least it means that there shouldn't be any delays, and it's all a lot more comfortable. The "five star" version of RT!

Chris
User
Posted 10 Feb 2019 at 12:10

Sounds like you are in excellent hands my friend. I am so grateful to my local hospital in Weston super mare and also Bristol Haematology and Oncology Centre that I am  now very active member of the Patients Council at my local hospital. I am a lay member of the Cancer Board, along with a lady who has breast cancer. We have an important  perspective that helps keep consultants feet on the ground!


I am also on the Quality and Safety Board, which fills a vital role monitoring across every department of the hospital. 


 

User
Posted 11 Feb 2019 at 17:35
One session done, 31 to go...

The treatment itself was no big deal, but a few hours after getting home I started feeling extremely nauseous, which has persisted. I don't know if it's a real result of the radiotherapy or purely psychosomatic (not that it changes anything either way). I'll ask the nurses about it tomorrow.

Chris
User
Posted 11 Feb 2019 at 17:38

Extremely unlikely in my experience Chris. also with those i attended RT with. But we are all different. IMHO more lilely to be nerves or something you ate. but i must state this is my unprofessional opinion. your nurses or radiologist are best suited to advise you on this.

Edited by member 11 Feb 2019 at 17:40  | Reason: Not specified

User
Posted 11 Feb 2019 at 18:00

Sorry to read about your nausea Chris. 


I didnt find nausea to be a probkem with RT. Tiredness and bowel issues yes.

Ido4

User
Posted 11 Feb 2019 at 18:20
Probably just nerves. I didn't get very much sleep last night. I'm sure I'll feel a lot better after an early night and a good night's sleep!

Chris
User
Posted 11 Feb 2019 at 19:16
Sounds like an adrenaline low CC
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2019 at 19:56
I'm sure you're right, Lyn. I've been feeling a bit stressed this last couple of weeks. As you know, I went through an awful lot last summer (having a kidney removed, etc), but since then I've basically put all thoughts of cancer behind me and been enjoying life again. It's only in the last week or so that the reality of having to get through the RT has hit me, and it's made me a bit emotional and down in the dumps again. I'm sure I'll get over it once I'm settled into the routine of the daily RT sessions.

Chris
User
Posted 11 Feb 2019 at 20:03
Chris

My advice is to make sure you get plenty of rest and develop a routine. Find things to occupy you and keep your mind off the treatment. I found putting time into more inventive ways to eat a low residue diet distracting and help me avoid eating wallpaper paste all the time 😂
User
Posted 11 Feb 2019 at 20:06
Good advice as always. Thanks, Pete.

Chris
User
Posted 11 Feb 2019 at 20:19
In case anyone's interested in the routine at Clatterbridge, I was shown through into the waiting room, and about 20m before my appointment a nurse brought me a flask of water and a glass.

When my time came, I went into a changing room and was asked to remove just my shoes and trousers. From there, a door at the other end of the changing room led into the treatment area. I lay down on the bed and was then asked to pull down my underpants. About 10m of adjustments and calling out numbers, and then the actual treatment which took about 5m I'd guess, so probably around 20m from going into the changing room to getting dressed again. No hospital gowns!

Chris
User
Posted 11 Feb 2019 at 20:21
If you could see what I’ve achieved with paint-by-numbers in the last 3 years. !!!! Not an artistic bone in my body , but it is totally addictive lol. You don’t have a clue where to start , and then it all starts looking pretty good. Anyone can do it , and I’ve sold two of them. Good luck Chris
User
Posted 11 Feb 2019 at 20:59

Chris


Sounds just like my routine. If you take enemas watch out for ragged arse over time. You may need to give them a break for a few days if the burn gets too much. Also if you start feeling angry and your skin starts changing colour, please notify your Radiotherapy nurse.

User
Posted 11 Feb 2019 at 21:40
CC, did anyone mention to you about not using perfumed shower gel, etc? Kinder to your skin if you can buy either pure or Ph balanced shower gel - such as the ones you can find in the baby section at the supermarket.

Not all hospitals advise or require it although at Jimmy's it was a must do.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2019 at 08:33

Itis great to be able to get advice on here about personal issues with no stigma👍


I kept myself well  hydrated during my RT but course this depends how well you personally cope with urine retention.


I used Dove shower gel  during my treatment and I liked it so much I have continued using it today.  I also purchased a tub of 99% aloe vera gel which I applied all over the treatment area once I got home and had had a shower I had no skin issues at all which I put down to this routine.


 I also used a moist impregnated toilet tissue to avoid “stinging ring” issues. This worked for me.


 As it seems prudent to add these days, the comments above worked for me, but may not work for you, so take advice from a professional at your treatment centre 


 

User
Posted 12 Feb 2019 at 13:44
Thanks for the advice. Two sessions now completed. Feeling a lot better today - I think it was just nerves yesterday.

Chris
User
Posted 12 Feb 2019 at 13:55

Ref Sore anus from RT or enema etc -


I cant offer advice on RT specifically as I am lucky enough to be reccurrence free since RARP.


However I have sufferred with IBS, Hemorrhoids and Fissures for many years. As my TRUS biopsy was approaching I had an anul fissure, so was desperate to get it sorted before hand. Any one who has had an anul fissure will understand the terror I was feeling. I got the usual cream from my Dr and a referral to a Colo rectal consultant. The consultant booked me in for a colonoscopy after the biopsy, but he also recommended using Bepanthen nappy rash cream, stating that its ok for a babies bum so its ok for you and you cant use to much. I have used it every day since, so over two years and have not had an occurrence of either since. Thats the longest pain free period for about thirty years.


Maybe worth a try if you need it.


Cheers


Bill

Edited by member 12 Feb 2019 at 14:16  | Reason: Hit post before finished

User
Posted 12 Feb 2019 at 16:32

CC, to add to Lyn's post I was advised to use Zero shower gel or babywash during radiotherapy, anything else was a definite no.


On my first day I had already showered with the normal shower gel as no-one had told me prior to that.


I was also advised not to use certain kinds of moisturiser on the treated area (as if!) as many creams and emollients contain metal particles which can interfere with the delivery of the radiation or cause the area irritation.


I never quite understood why some prostate patients were given a special cream to relieve any sunburn type irritation on the skin and I was told I didn't need it. I am not sure if this is because I no longer had a prostate and the radiation was focused deeper. As it turned out my skin didn't really react.


Hope today's blast has gone well.

Ido4

User
Posted 12 Feb 2019 at 16:54
Ido, are you naturally quite dark skinned and find tanning easy? John had no problems but is very dark.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2019 at 17:11
Strange that nobody at the hospital has mentioned anything about that to me. I'll ask them at tomorrow's session.
User
Posted 12 Feb 2019 at 17:47

Lyn, I am a true Celt! I sunburn very easily. 

Ido4

User
Posted 13 Feb 2019 at 14:58

Three sessions completed and no ill-effects so far. I do find myself obsessed about the state of my bowels each morning, however, and whether they will be in an appropriate state for my RT session smile.


Chris

Edited by member 13 Feb 2019 at 15:03  | Reason: Not specified

User
Posted 13 Feb 2019 at 15:15

All quite  normal so far Chris as far as my experience tells me.  The only symptom I experienced whilst I was undergoing treatment was diarrhoea the other symptoms came in the weeks after treatment had finished. Now 5 months after I finished radiotherapy by far the most common side-effects I have is flatulence and it is constant nearly always through the day.  Most commonly  brought on by walking up and down stairs or bending over to pick something up luckily my wife finds it quite funny 

Edited by member 13 Feb 2019 at 15:17  | Reason: Not specified

User
Posted 13 Feb 2019 at 16:35
I've spun up IBS again which absolutely sucks as it feels like I am passing razor wire through my GI tract. Probably stress related and also I had a relapse back to taking Bang Bang Sriracha sauce with everything which does not help but I need some vices :)
User
Posted 15 Feb 2019 at 15:16
Well, this is slightly annoying. Four sessions successfully completed, but I went in today (a 40 mile journey) only to be told that both the main RT machine and its "mirror" (ie backup) were out of action, which they said was the first time that had ever happened in the 5 years the machine have been in operation. So no treatment today, and another appointment added on the end of my treatment.

Chris
User
Posted 15 Feb 2019 at 15:19

Chris


Hazard of the job. These machines get a hammering and there are a lot of complex mechanical and electrical parts. I think I had it three times. Last session of all for me the MRI scanner thingy broke but they went ahead anyway as I lined up so well on my dots due to my perfectly formed body :)


 

User
Posted 15 Feb 2019 at 16:12

Sorry to read that Chris. The machines do break down periodically, it caused me some worry but you will get the full treatment regardless.


Where i was treated there were two machines at that waiting room. The machine i wasn't on was down more than it was up with parts and engineers coming from the USA.


It meant my treatment was often late but we all got treated. Some people were moved to other machines (there were 7 in total at the centre) One of the radiologists told me they just keep working until they treat everyone, amazing people.


 

Ido4

User
Posted 15 Feb 2019 at 19:25
Oh, these things happen. No point in getting upset about it. The almost 90 mile round trip for no purpose is a little frustrating, though.

Chris
User
Posted 18 Feb 2019 at 17:01
Five treatments now completed.

Over the weekend I started having noticeable difficulty urinating, similar to the way it felt after my biopsies, so I suspect that the radiation is starting to make my prostate swell up. It's not yet at the stage where it's a problem, but it's definitely noticeable. I told the nurse about it when I went for my treatment today, and she's arranging for a "radiation support worker" (whatever that might be!) to speak to me at some point this week.

Chris
User
Posted 20 Feb 2019 at 18:53
7 sessions completed.

I saw the doctor today at the cancer center and he's prescribed me Tamsulosin to help with the issues I've started having in urinating, so hopefully that'll solve the problem!

Chris
User
Posted 21 Feb 2019 at 13:29
Hmmm. 8 sessions completed and today I've started getting thick mucus coming out of my backside. I know this is a common side-effect, but I am slightly concerned about getting such side-effects so soon into my treatment. I really hope that this isn't doing too much "collateral damage"!

Chris
User
Posted 21 Feb 2019 at 13:50
I had it occasionally. I would be more concerned about bleeding.
User
Posted 22 Feb 2019 at 16:32
Feeling a lot more cheerful about things today. Two weeks completed: 9 fractions (because of last Friday's machine breakdown) so I'm over a quarter of the way through my treatment. No more mucus since yesterday and the Tamsulosin seems to have done the trick as far as the urinary issues are concerned.

Looking forward to a nice weekend off!

Chris
User
Posted 24 Feb 2019 at 14:11

Chris,  enjoy your weekend off you deserve, it the stress of travelling five days a week for treatment is something I won’t forget in a long time. I know some people have to travel a lot farther than i did! Getting to the centre of the city of Bristol where I was treated was not fun at all,  as there were about 20 parking spaces at the hospital and all the multistories parking locally was very expensive.


 If you remember I completed my RT first week in September last year and i’m still getting bouts of diarrhoea that come back for no reason as I control my diet very well and the mucus discharge is still a problem for me, so much so that to put it simply sometimes my bum cheeks are stuck together!!


 Most of these you can get around by becoming organised and accepting them, but the problem peeing is something  you really need to keep on top of and tell the nurses every time you have a problem.


 I clearly remember being asked every day by the  Radiotherapy staff as I was getting ready for treatment, were there any changes or anything new that I should tell them about before commencing my fraction. 


 They always emphasised that nothing was too small or insignificant and it was better that I told them anything I was unsure of. I consider myself lucky to have got through radiotherapy fairly scot-free I wish you all the best in the rest of your fractions and keep in touch 

User
Posted 24 Feb 2019 at 14:57
Cheers, Alan; I appreciate the good wishes.

One good thing about being treated at a specialist cancer centre is that (unlike the rest of the hospital) they have a separate free car park for people undergoing treatment, so at least that removes the stress of having to find a parking space at the end of a long journey.

Yes, the nurses ask me every day if everything is going OK, and I'm being completely open with them about anything that does happen. I'm also seeing the oncologist once a week during my treatment, so I can raise any concerns with him, too. The Tamsulosin has sorted out the urinary issues for now, but I'll definitely tell them if it stops doing so!

All the best,

Chris


User
Posted 24 Feb 2019 at 16:41

Hope you are enjoying the weekend off and that the remaining treatments go smoothly.


The cancer centre i went to had a separate car park for patients, it takes some of the stress away knowing you will get parked.


 

Ido4

User
Posted 27 Feb 2019 at 21:26
I find myself with an unanticipated worry this evening.

For ages and ages I've had severe pain in my right shoulder if I stretch my arm out sideways (up and down is fine and no pain under normal circumstances). Went to see a physiotherapist about a month ago. After several sessions she diagnosed "frozen shoulder" and advised me to see an orthopaedic surgeon. Went to my GP, got a referral to see said surgeon privately and had an appointment this evening.

Surgeon, after hearing my medical history, casually says that there's a possibility it's bone mets!!!! WTF! He says he doesn't think it is, because that would be more likely to cause constant pain (which I don't have) but he needs to rule it out. He sends me for multiple shoulder X-rays. These look normal, apparently, but now he wants me to have a shoulder MRI scan.

So that's me going to have sleepless nights for the next fortnight until I know the results. I know it's unlikely to be mets, but there's always the little voice that says "but what if...?"

Definitely NOT what I was expecting!

Chris
User
Posted 27 Feb 2019 at 21:30

Chris,


  The likelihood of a bone metastasis bypassing all of the other bones like hip and spine and pelvis and going straight to your shoulder are in my opinion very remote and I wouldn’t worry about it at all.


 I recently recovered from a bad case of frozen shoulder or Bursitis, when I fell off my bike and landed on my shoulder it can take a long time to come good and in my case it took 18 months before I could get a gel out of my back pocket without pain when I was riding.  The shoulder is a very complicated set up do you remember banging it or falling on it in recent times 

Edited by member 27 Feb 2019 at 21:32  | Reason: Not specified

User
Posted 27 Feb 2019 at 21:35
Oh I know you're right, Alan. I'm just a bit paranoid about cancer after everything that's happened in the last year, and when the surgeon mentioned "cancer" (it was more "I don't think it's cancer but we'll make sure") my heart just sank. I'm try not to worry, but sometimes it's difficult not to.

Chris
User
Posted 27 Feb 2019 at 23:16
Better this way than the other - a physio could do serious damage by treating someone with cancer without checking for possible mets, and could be struck off. That was how John ended up with new knees ... referred to physio for back pain, MRI ordered before physio could begin, recognition that it was his knees that were causing the back problems, two new knees supplied 👍🏼

Massage is just as dangerous if not given by someone that has been trained in oncology massage but there is no national regulatory body for masseurs. Massage offered by hospice day centres, Macmillan, etc is safe, obviously.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Feb 2019 at 08:11
Thanks, Lyn. I'm going to try and have a word with my (or another) oncologist about this when I go for my RT later today. It's got me seriously scared.

Chris
User
Posted 28 Feb 2019 at 09:04
It's routine - and sensible so try not to worry - if there had been any bone mets I think they would have been picked up last year when all the other tumours were identified.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Feb 2019 at 14:55
Fortunately my oncologist had a clinic this morning, so I was able to have a chat with him before my treatment. He's put my mind at rest. He told me that I had the "gold standard" most accurate scan for bone mets during my diagnosis which came back absolutely clear, and that the fact that my PSA has been steadily falling while I've been on bicalutamide makes him absolutely certain that there are no mets. He said that surgeons who know nothing about cancer are constantly doing this sort of thing and scaring his patients out of their minds, and that I shouldn't give it a second thought. I'm feeling a lot better after hearing that!

On the treatment front, 13 sessions now completed, so three more and I'll be at the half way point. Everything's fine, as far as symptoms go.

Chris
User
Posted 28 Feb 2019 at 16:45
Well done mate on the RT and so glad you are entering the weekend in a better frame of mind. Best wishes
User
Posted 28 Feb 2019 at 17:51
Thanks Chris!
User
Posted 28 Feb 2019 at 20:06
Glad things are progressing!
 
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