Hello everyone .. I’m Julie

Hello Strictlyjulieb 

A big welcome to the group, and I am so pleased to hear that you are now cancer-free and coping well with ongoing side effects.  I had a quick Google of JUDE and I am really interested if things will continue to improve with you in your bladder - says me with a yawn after so many loo visits every night interrupting sleep! 

And I don't know where you are but a late onset effects clinic sounds wonderful and something that many of us could use; I think the remit of the oncologist is to cure the cancer and they are often rather bemused once you are treated and clear and you mention side-effects at check-ups.  They are not always aware of the extent of the problems that some people have.

I am about to post an update on investigations that I have had following hip pain if you are interested!

Thank you for posting and giving such a positive view after treatment.

Irene xxx 

Hi Julie , 

i finished my treatment at a similar time to you and things looked good 

fast forward a few months and the late effects kicked in … digestive issues , radiation proctitis , insufficient fractures and nausea !!! I have seen GP’s , late effects clinic and gastro doctors but to no conclusion . I have tried diet , Ibs meds etc and sometimes my confidence has been tested when I have to cancel things.. good days , not so good days but always positive days .

I hope you get some answers 

take care 

Chrissie xx

Hi Strictlyjulieb & welcome. It’s good to hear that your treatment was successful although I’m sorry to hear that you’re suffering some late side effects. 

As Irene has said I too could make use of a late onset side  effects clinic, presuming there’s one available close to me do you need a referral for this or is it a self referral process? I had an amazing oncologist but his job was to get me free of cancer & between him & my colorectal surgeon thankfully that was achieved but what comes after that 5 year surveillance is over I’ve found to be basically a bit of a minefield for dealing with late onset side effects.  

My late effects are more hip, muscle, back related although I do suspect my bladder/urethra have been affected somewhat by the radiotherapy as when I need to go I need to go (I’m sure to understand exactly what I mean!) or it comes anyhoo! The jokes I used to make about needing tena ladies have come back & bitten me firmly in the backside as I don’t go far without one these days!

I’ve seen some information about JUDE somewhere before & had a little read, you’ll have to let us know if you have any success.

I did suffer some urgency in my early recovery & still do from time to time (usually food related) but luckily I never suffered with loose stools, in fact I swung the other way completely & suffered with constipation! I did however suffer with a lot of wind & bloating & found, especially in the first couple of years post treatment, there were lots of foods I once enjoyed that I could no longer tolerate, some I’m ok with now others I’ve had to cut from my diet almost completely. 

Myself & Irene75359 , are presently jumping through hoops trying to get some help with hip/back issues at the moment & it’s been pretty well documented on another post started by Irene entitled ’To those with painful hips… ‘ if you wanted a read. 

Nicola 

Hello Strictlyjulieb,

So good that you are cancer free and that you had a lovely break. 

I think that many of us here have had ongoing after effects following treatment. 
It seems to be the ‘new normal’.

I finished treatment in November 24 and also initially had wildly unpredictable bowels with . This then  settled but then returned in October 25 with a mix of constipation, sudden bloody loose stools and right sided pain which is being investigated. Like other forum members I also developed intense lower back pain. 

I am immensely grateful that the treatment was effective but would so welcome guidance on how to manage the symptoms. As others have said, the aim of treatment is curing the tumour but it’s not easy to get guidance on how best to manage the after effects. I know that things won’t ever be back to normal and am realistic about this.                                               The late effects clinic sounds great and I’m so glad that you have access to this. I wish there were more of them! 

xx

Hi Irene thank you I have 3 months supply of Jude so I’ll keep you updated .

Sorry to hear this Chrissie those side effects sound hard to live with . I hope you can get some of them sorted x

Yes the clinic is great support as late onset side effects are so real and you think it’s been all this time and now this … I go to a gym class 3 times a week the hardest but is going but I do think it helps with my fitness ! And I rarely need a wee when I exercising lol 

Hi Nicola , 

I was followed up by the late onset clinic since discharge from the oncologist . She was present from day 1 to date . The best thing is she understands , listens , advice and helps me with anything . She’s better than my GP and I have my follow uo Locally with a surgeon even though I never had surgery ! My follow up is excellent ! Had my CT / MRI last night so fingers crossed for positive results ! 
I have had to cut out mushrooms from my diet .. tomatoes but I’m ok with a pasta sauce ! Otherwise I eat everything but I do take loperamide ! 
I haven’t any pain only from my bootcamp class at the gym lol 

Hi 

I finished treatment oct 25 and got all clear in feb 26. Following treatment i recovered quite quickly but I do get side effects. I get very tired. I returned to work in December and as if not had an income for 3 months I worked hard whilst the work was available. I think I pushed myself too hard so ive decided to have time off as I'm so exhausted.

I also suffer with alot of bloating and wind. I go to the toilet and its loud wind lots of it.

What is more embarrassing is that out of the blue a trump will come out and it always happens at the wrong time such as being in work and in the company of others. Its so humiliating as sometimes im with colleagues and patients and it comes out of the blue and without warning. I try to pretend it hasn't happened hoping others haven't noticed but its really embarrassing.

I also suffer with constipation sometimes really badly which causes stomach cramps and can be quite painful but once I manage to empty im ok again

The main thing for me is that I get tired but I also know I need to slow down my life style.

Hi Ian , it’s early days still , be kind to yourself and rest I went back to the gym in the January after finishing treatment August . The side effects are difficult aren’t they but hopefully over time you will be better .