Cheshire Chris's Treatment Thread

User

Posted 28 Feb 2019 at 20:38

Cheers, Pete!

Yet again the Spire Cheshire hospital are refusing to do an MRI scan of my shoulder. They have a ridiculous hospital policy of not doing MRI scans of anyone with metal coils inside them, despite the fact that my coils are platinum (definitely non-ferromagnetic!) and both the hospital where I had the coil embolisation procedure done and the vascular consultant at the Spire have said that I’m perfectly OK to have MRI scans. But rules are rules.

So it’ll be a CT scan instead of an MRI, which is not ideal. I would have preferred not to have yet more radiation on top of my RT! But it needs doing, so needs must. Hopefully I’ll get an appointment tomorrow.

Chris

User

Posted 01 Mar 2019 at 18:56

Had a CT scan of my shoulder today. I'm told it'll be assessed over the weekend. I have another appointment with the consultant for next Wed evening, so I should find out the result then.

Chris

User

Posted 01 Mar 2019 at 19:39

Fingers crossed!

User

Posted 04 Mar 2019 at 15:34

Well, the radiology report is back and a clean bill of health as far as bone mets are concerned, thank goodness! "Wear and tear on the joint" is the verdict. I had my weekly meeting with my oncologist today and he was kind enough to phone up and get the report for me, which I was very grateful for. I see the orthopaedic surgeon again on Wednesday evening, but I'm not bothered now I know it's not cancer!

Chris

User

Posted 04 Mar 2019 at 22:17

Great news.x

User

Posted 05 Mar 2019 at 08:04

Thanks. I knew that cancer was unlikely but it was still causing me a certain amount of anxiety. Once you’ve been diagnosed with cancer, there’s a tendency to think that every ache and pain might mean that it’s spread!

Chris

User

Posted 05 Mar 2019 at 13:27

I've reached the half way point in my RT! 16 fractions completed, 16 more to go. To quote Churchill, "This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." . I feel like this is an important milestone.

Cheers,

Chris

Edited by member 05 Mar 2019 at 13:56 | Reason: Not specified

User

Posted 05 Mar 2019 at 14:19

Or is it the middle of the middle ? 😂😂

User

Posted 09 Mar 2019 at 21:36

Four weeks into my RT now, with another two and a half weeks to go. No drastic side-effects; the only annoying one is a need to urinate at very frequent intervals, typically 4-5 times during the night. I've started keeping a wide-mouthed bottle by my bed -saves having to get up!

I'll be glad when it's over; the daily travel is a real killer, particularly when, as is now the case, I need to make two toilet stops en route.

Cheers,

Chris

User

Posted 09 Mar 2019 at 21:44

Keep your chin up Chris. Just look forward to that last day. At my oncology Centre in Bristol there is a large brass bell by the reception desk which you ring when you leave after your last treatment I don’t know if they do that at your centre.

Just look forward to that last day. At my oncology Centre in Bristol there is a large brass bell by the reception desk which you ring when you leave after your last treatment and everybody turns round and give you a round of applause and you know that they mean it, because they are waiting to get the same position you are in. I don’t know if they do that at your centre.

The Peeing through the night is one of the worst parts of it, you wake up in the morning worn out and then you have to face travelling to the hospital.

I’m guessing you’ve got over the problem if you had early on in the treatment and now it’s just soldiering on mate.

Alan.

Edited by member 09 Mar 2019 at 21:46 | Reason: Grammar

User

Posted 09 Mar 2019 at 22:15

I'm having my treatment at a private clinic, Alan. It's far too posh to go in for such vulgar things as bells .

Chris

User

Posted 14 Mar 2019 at 08:27

22 fractions now completed, 10 to go. I feel as I'm on the home straight now!

The side-effects remain pretty much unchanged, which I can live with. Frequent need to urinate, particularly during the night. No diarrhoea, thank goodness, although passing quite a lot of mucus.

I think I've got off reasonably lightly thus far! Hopefully that's indicative of the fact that my bowel has been largely avoided by the radiation beam.

Cheers,

Chris

User

Posted 14 Mar 2019 at 08:34

You’re well on the way now Chris.

Hope the remaning treatments go well.

Ido4

User

Posted 14 Mar 2019 at 08:36

Thanks!

Chris

User

Posted 14 Mar 2019 at 12:22

Good news Chris , sounds like its all going to plan. I suspect its partly due to the accuracy of the mapping that helps avoid bits of us that don't need blasting.....

Good luck for the remaining treatment days.

Phil

User

Posted 16 Mar 2019 at 14:33

Originally Posted by: Online Community Member

I'm having my treatment at a private clinic, Alan. It's far too posh to go in for such vulgar things as bells .

Chris

Nobody is too posh for a bit of celebratory bell ringing Chris. Is it wrong though that when I heard the one at the (private) centre where I am being treated a few days ago, whilst joining in giving the lucky person a round of aplause, I was also thinking ”last orders at the bar”?

Edited by member 16 Mar 2019 at 14:37 | Reason: Not specified

User

Posted 16 Mar 2019 at 16:58

I’m actually entirely on my own in the waiting room at the moment. There was another chap who had the appointment before mine up until a week ago, but he’s now finished his treatment and nobody else has yet started. The machine isn’t idle - there’s another entrance into the treatment area from the NHS part of the hospital and other people are using that - but I’m alone at the moment in the comfy private waiting room.

Only 8 sessions left. Machine breakdowns excepted, I finish a week on Wednesday.

Chris

User

Posted 17 Mar 2019 at 08:02

Chris,

what a year youve been through! It seems such an age ago we talked on the phone for the first time about all the issues you had to face and look at you now just eight sessions to go. I hope everything goes as well for you post radiotherapy as it has for me. I have still got some raging hot flushes and terrible flatulence which bring mucus related problems but in the greater scheme of things considering I was Gleason grade 9 I feel lucky.

I think you will have to wait at least eight weeks for your PSA test like i did, which is to let your body recover from the radiotherapy. My PSA was 8 before I started radiotherapy and was 0.5 two months afterwards at review.

I think it’s amazing how you faced this, I wonder if I could have taken the same approach.

I wonder if I could have taken the same approach.

I will be eternally grateful to my local NHS, and I am now considerably involved as a volunteer on the Patients Council, I also sit as a lay member on the quality and safety board and the cancer board. Our NHS has started a health and well-being series of meetings. This week I attended a meeting of newly diagnosed cancer patients (as a recovering patient) to offer help and advice. There were two gentlemen newly diagnosed with prostate cancer and their lack of knowledge and understanding in their condition was surprising and I was able to dispel the common myths and give them useful general advice from my own experience. I was aware that as every cancer is different to make sure they understood what I was saying was general advice and not specific.

Next month the same organisation is offering a meeting for those six months after radiotherapy which will be useful for me to attend as I am in that bracket now.

Anyway I must stop going on about me and so I wish you all the best in your last eight fractions and keep your patience waiting for the eight weeks to go until you get your review and PSA reading

Edited by member 17 Mar 2019 at 08:03 | Reason: Not specified

User

Posted 17 Mar 2019 at 11:14

Thanks for the kind words, Alan, and I'm delighted to hear that things are going so well for you. Yes, it has been quite an "eventful" year, hasn't it! A little less excitement in my life wouldn't go amiss . I'm really looking forward to the end of RT, and am happy that (touch wood) I seem to have escaped pretty lightly as far as side-effects are concerned.

I've decided to retire in August. Everything that's gone on in the last year has made me re-think my priorities, and realise that there are more important things in life than work and money. I've done all the "sums" and I can afford to retire now with a comfortable income, so that seems like the right thing to do.

Very best wishes to you,

Chris

Edited by member 17 Mar 2019 at 11:21 | Reason: Not specified

User

Posted 17 Mar 2019 at 14:00

A serious illness sharpens your focus onto what is important in life Chris.

you have made the right decision to retire my friend👍 Get yourself on a gentle focussed keep fit regime, be like me, i now know what is important in life and its not the way i used to be.

I have to admit i'm a more considerate and tolerant person than I used to be. not that I was that bad before!

Alan

User

Posted 17 Mar 2019 at 14:08

Thanks, Alan. Before I started with all this stuff I was very fit and active in my local ramblers' association, so as soon as feasible I plan to get back into that to regain my fitness, starting with "Easy" walks (which are not terribly easy!) and slowly working up to the strenuous full-day mountain walks I was able to do previously.

One thing that everything that's happened to me in the last year has taught me is that nobody knows what they are capable of doing until they're faced with the necessity of actually doing it. If someone had said to me at this time last year that I was about to be diagnosed with three different potentially fatal conditions and have two major operations and 6 weeks of radiotherapy I would have been aghast and said "There's absolutely no way I get do that!" But you just have to take things one step at a time and you do get through it, because you've no choice but to do so.

Cheers,

Chris

Edited by member 17 Mar 2019 at 14:21 | Reason: Not specified

User

Posted 17 Mar 2019 at 14:14

I really not going to teach you to suck eggs because you’re an intelligent man but you need to speak to your GP and the physio before jumping in to any regular exercise after the amount of time off you’ve had.

When I told my oncologist I was going to get straight back into cycling first thing she said was you have to take it very easy but then I told her I’ve been cycling 200 miles a week before my Diagnosis and I Have been cycling 100 miles a week All the way through my treatment she was gobsmacked. She was going to refer me to a physio said that would be a waste of time and just to do what my body felt able to and increase Slowly and sensibly. I think once you’re out on a nice long walk with your friends in the Ramblers it will soon put the last year behind you

User

Posted 17 Mar 2019 at 14:19

Oh yes, I'm going to take it nice and easy and listen to what my body tells me when it comes to doing too much! I learned that the hard way when seriously overdoing it in the first week or two after my nephrectomy operation - a friend took me to the local Sainsbury's to do some shopping, and I thought I'd be OK pushing the trolley around while she put things in it. After a couple of minutes of doing so, though, I felt extremely unwell and my friend told me that I turned completely grey, so I went and sat down while she finished the shopping!

Cheers,

Chris

User

Posted 21 Mar 2019 at 08:21

A pretty tough day yesterday - by far the worst since starting RT. All day long from the time I got up until about mid afternoon my bowel was cramping and I had an irresistible urge to go to the loo every few minutes, but all that came out was gas and mucus. Exhausting. Fortunately it seems to have stopped, for the time being at least.

Only 5 sessions left, including today (ie next Wednesday should be the last one). My oncologist tells me that side-effects can be expected to carry on getting worse for two weeks after treatment finishes, so I'm hoping I don't get too many repeats of yesterday.

Really looking forward to getting this over with. Six weeks of RT now and it feels like an eternity.

Chris

User

Posted 21 Mar 2019 at 08:49

Sounds like a hard day yesterday Chris.

The end of RT is in sight but it won'tfeel like that just now.

Are you taking Fybogel? I was given that and it made a huge difference.

Hope today is a better day.

Ido4

User

Posted 21 Mar 2019 at 08:57

Thanks, Ido. I'm feeling much better today. Yesterday was really draining emotionally as well as physical. No, I've not tried Fybogel because until yesterday I'd experienced no real bowel problems. No diarrhoea, just a bit of mucus. I'm seeing my oncologist after today's treatment, so I'll ask his advice.

All the best,

Chris

User

Posted 27 Mar 2019 at 13:36

Finished my RT today !!!

I'm really not feeling too bad at all. A few issues with frquent urination (particularly at night), passing a bit of mucus occasionally from my bowel, and that's pretty much it. I think I've got off pretty lightly compared to some people.

I really can't praise the Clatterbridge Private Clinic (the private part of the Clatterbridge Cancer Centre on the Wirral) highly enough. All the nurses there were kind and friendly, and really helped me to get through the occasional bad day I had during my treatment, and my oncologist, whom I saw weekly during my treatment, was also very kind and supportive. When I finished today I gave them a card and box of chocalates, and they gave me a lovely card signed by all of them. In a strange kind of way I'm going to miss it - it's really been the centre of my life for nearly two months!

I'll be having a follow-up appointment with my oncologist in 6 weeks' time (ie around mid May) so I need to get a PSA test done at my GP's shortly before that. My oncologist said that I shouldn't worry what the result is - RT can cause a "spike" in PSA - and that as long as it's not risen significantly above the pre-treatment level of 13 he'll be happy.

I'll be on HT for another year and 5 months, but that shouldn't be any big deal. Hopefully today marks the end of my cancer treatment!

Cheers,

Chris

User

Posted 27 Mar 2019 at 13:44

Congratulations Chris it’s a fantastic feeling when you finish radiotherapy. I’m so glad you got through with minimal issues, a bit like I did after mine.

You’ve got a great positive attitude which will stand you in good stead over the coming months get out now with your friends and enjoy your life

User

Posted 27 Mar 2019 at 15:33

Great news Chris. It's strange when the treatment stops and you dont have to be there every day. Enjoy being off timetable!

Ian

Ido4

User

Posted 30 Mar 2019 at 10:09

I think I'm losing my marbles. Last night I had an absolutely awful night - needing to urinate literally every few minutes all night long, and completely unable to empty my bladder. I keep my week's tablets in a pill-box on my bedside table with labelled compartments for each day of the week and, this morning, when I was getting dressed and taking my tablets as usual, I noticed that I hadn't taken any of the last two days' tablets! No wonder I'm having problems after two days without Tamsulosin. Hope I've not done myself any harm by not taking any bicalutimide for the last two days...

I've now set a daily alarm on my phone to remind me to take my tablets. Hopefully that will help.

User

Posted 30 Mar 2019 at 13:00

If the hospital where you had your radiotherapy is anything like mine I was allowed to phone up the emergency line for eight weeks after my treatment ended. If I were you Chris I would just phone up and check everything is okay. It’s better to be safe than sorry after everything you have been through

Alan

User

Posted 30 Mar 2019 at 23:51

Hi Chris

Since yesterday I have been thinking that shall write few words for Chris...or not...as you can imagine I have tiny knowledge of Prostate related illness I cannot tell you what to do or suggest anything,

But let me say this please.....I know how to cope with life on your own when your not well.

But I cannot imagine the difficulties of getting up every minutes never mind the hour's .must be extremely tiring!!!!!yes it's easy for us to write type few words on here but the pains difficulties your going through those only the person could feel is you!

I'm really sorry for you I mean it.

.before and after I had my operation you and Lynn supported me so much. I thank you both for that,

I wish that I live in your area than I could help you for your shopping etc.

Hope you can have a good night sleep from tonight my friend.

Regards

D.R

User

Posted 31 Mar 2019 at 09:55

Thanks, DR. Everything's fine again now I'm taking the Tamsulosin again. Had a much better night last night.

Cheers,

Chris

User

Posted 01 Apr 2019 at 11:14

I must admit that I was always sceptical about the claims of the benefit of drinking cranberry juice for bladder irritation, but I was in Sainsbury's a couple of days ago and noticed cranberry juice on the shelf, so I thought I'd give it a go. I've been drinking a glass of it in the morning and in the evening, and it really has made a noticeable difference! The intense burning pain I'm getting at the end of urinating at the moment is greatly eased for several hours after drinking the cranberry juice.

I'd recommend it to anyone experiencing urinary pain as a result of RT.

Cheers,

Chris

User

Posted 01 Apr 2019 at 13:29

Women have been treating cystitis with cranberry juice or cranberry extract for generations - glad you are feeling better

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

User

Posted 04 Apr 2019 at 11:54

It's now a week since I finished my RT and I've just noticed that the discomfort I've been experiencing for weeks when urinating (an intense burning sensation) has completely disappeared. Hopefully that means that the swelling in my prostate caused by the radiotherapy is easing. There's no change in the need to urinate frequently; I think that has a different cause (irritation of the bladder by the radiation).

User

Posted 04 Apr 2019 at 12:04

Chris

it was nearl six weeks in my case before i felt effects including irritation caused by radiotherapy really diappeared.

User

Posted 04 Apr 2019 at 12:11

Thanks, Alan. My oncologist did warn me that the side-effects could be expected to carry on intensifying for a fortnight after treatment ended, so I'm pleased that this particular one does seem to have cleared up.

Chris

User

Posted 04 Apr 2019 at 12:18

Chris

yes that’s exactly the same as I was told, that we keep on cooking for at least two weeks!!

User

Posted 07 Apr 2019 at 14:44

Belated congratulations Chris on getting to the end of your RT. I’ve still got 9/37 to go, but the end is definitely in sight. Weird thinking that I will “miss” my visits to the RT clinic, so I was glad when you said you were missing it. Thanks for the heads up about the side effects continuing afterwards. Hope things start to sort themselves out for you. I think you’ve been through enough.

User

Posted 07 Apr 2019 at 14:49

Arthur

It must be a common theme getting withdrawal symptoms after you finish radiotherapy. I got to know the receptionist very well and also the nurses who gave me my treatment every day. The day after I finished my treatment schedule I was sat at home on the sofa sort of semi shellshocked. In some ways the tradition of ringing a brass bell and getting a photo taken at the end of your treatment gave you some sort of closure, and I have some lovely photos taken by the receptionist as we left for the last time

User

Posted 10 Apr 2019 at 08:39

Two weeks after RT now, and I’m happy to report that the problem of frequent overnight urination has now cleared up; the last three nights I’ve only had to get up once, which is the way things were before I started RT. I’m still taking the Tamsulosin at present - I’m going to give it another week and then try stopping that and seeing what happens.

Cheers,

Chris

User

Posted 10 Apr 2019 at 14:49

That’s good Chris. It’s exhausting when you’re up several times each night.

Ido4

User

Posted 10 Apr 2019 at 18:46

It certainly is. I had a period of a couple of weeks where I wasn’t able to go any longer than 45m between peeing, and that results in major sleep deprivation. I’m very happy that it’s over!

User

Posted 10 Apr 2019 at 22:29

Superman Chris

How do you cope on your own with your hectic life?

I think you really should write a book about your life style/health /appointments/travelling between home and medical places.

My local hospital is Royal Free ,Hampstead heat-(London) Its just around the corner to me but you have to travel such a long journeyj to get treatments etc.you live on your own ....never mind the physical support how about the emotional support ..how do you cope?

Regards

D.R

User

Posted 12 Apr 2019 at 09:02

Good luck with everything!

User

Posted 13 Apr 2019 at 08:36

I've just seen the invoice my insurance company has paid for my RT: £23,426, plus another invoice of £2,450 from my oncologist. After years of paying in to my private medical insurance plan and not having any treatment, I think I've now got my money's worth out of it!

Cheers,

Chris

User

Posted 13 Apr 2019 at 11:57

My oncologist initially refused to offer me salvage radiotherapy and I started costing it privately. I don’t have private medical cal insurance so thank goodness an MDT recommended I have SRT.

The private companies where I am pay to use the NHS machines as they don’t have them!

You've certainly got your money’s worth.

Hope you are doing ok.

Ido4

User

Posted 13 Apr 2019 at 14:58

Thanks, Ido. It's the same at Clatterbridge: one group of RT machines, with the treatment area having two entrances, one from the NHS hospital and the other from the private clinic.

User

Posted 18 Apr 2019 at 20:35

Three weeks after the end of RT. After a couple of weeks of feeling pretty good, for the last two days I’ve been experiencing a constant burning sensation in my rectum. I’m not passing any blood or mucus, but the sensation isn’t at all pleasant. If it’s still there after Easter I’ll give my oncologist a ring and ask his advice on the matter.

EDIT: I see that this is a common symptom of radiation proctitis and is apparently common after RT. That’s not good to hear - I thought I’d escaped without it, but it would seem not. Apparently though, in most cases it clears up within a few months of the end of treatment, so hopefully it won’t last too long. It is pretty uncomfortable.

Edited by member 18 Apr 2019 at 20:56 | Reason: Not specified

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Cheshire Chris's Treatment Thread

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