Ongoing side effects

Hi Trv,

I'm so dang sorry to hear about what a hard time you're having. This is the very thing we all fear, isn't it, and you lost the lottery by developing these post-treatment challenges. 

I'm a year out too, with my terror-producing anoscopy exam coming up on  Wednesday so I'm more stressed and in pain than usual. For the most part I'm doing well, able to move my bowels without drama and able to move around in the world again without much worry about an accident—at least if I have time to let my coffee move everything out.

I'm glad you went back to your surgeon and that what he saw looked okay, also glad he's referring you to get a better look. That's a smart place to start. Have you been doing the sphincter exercises for long? That might just be the key to getting a bit more control back. I can totally understand the shock of having the specter of a stoma raised so long after finishing the treatment. But maybe you can try to re-frame it in your head as a possible welcome relief to all the incontinence, pain and uncertainty but ONLY IF the exercises don't pay off. Many people look at their stomas as the best thing that could have happened. 

I'm glad you're seeing a therapist and heartbroken at your lack of support from loved ones. Back to 'normal' is different than most of us expect, and yours is on the far end of the spectrum. Sometimes I think this cancer is harder for a lot of people to rally around. We all get inured to the endless versions of 'anal' that we have to hear and discuss, but not all of our loved ones can manage the recoil from it. 

Remember you can ALWAYS come here and find people who get it. You're in a hard place, with so much pain and uncertainty this far out. And this could be any of us. Hang in there and give it some more time, with a determined push to keep up with the exercises, and, of course, diet will have a big impact on things. I assume you're watching out for foods that upset your system?

If things don't improve, that stoma could be a shining star in your future, freeing you to get back to life.

I'm rooting for you!

Hugs

Suz

Hi Trv22 

I’m really pleased to hear that your treatment has been successful although I’m sorry to hear you’re experiencing these ongoing issues. 

My oncologist was aware that I volunteered on the Macmillan Online Community & I would pick his brains from time to time about issues that can occur post chemoradiotherapy. He was quite open to discussing the issues of incontinence post treatment & said that if down the line it is a major issue then it’s definitely worth considering a stoma as this will give you the freedom that incontinence robs you of. This obviously takes a lot of consideration & is a very personal decision but like you are now I think especially as you’re just 1 year out of treatment I would explore the other options first. Many, many people live full & active lives with stomas .…  It sounds as though your surgeon has been pretty thorough in investigating the issues you’re having which is great. 

You’re doing everything right, you’re working with the continence services & also it’s great that you’ve spoken with a counsellor so you have some support whilst you work through this. 

I hope you get some relief very soon. 

Nicola

Hi 

Thankyou so much for your kind words and advise, it means a lot . I think this site is amazing and I have followed it for a while now. It is so good to have people that have gone through the same and know what it's like .

 Initially there was around a 2 month wait for the continence referral so had to wait a while before saw the nurse, so I have only been doing the exercises for about 3 weeks .  I should've spoken to my gp before really  but I just found the whole thing so embarrassing.  Goodness knows why after all the poking and proding that I have endured . I just cannot get my head around it all even now . Something I need to work on in my counselling sessions . I haven't even been able to say to her where the tumour was yet. I just said the bowel area . I know I shouldn't feel ashamed or embarrassed but I just do . I can talk more freely on here than to any doctor or therapist so for that thank you all . 

I will continue with the exercises and see where it takes me . Hopefully it works but if it doesn't then at least I know I have other options.  

Take Care . 

Hi 

Thank you for your help and advice , you are right it is early days in terms of thinking about a stoma and will work through all my options first. It feels strange when people say it's only been a year , your body has been through a lot and needs time to heal etc .. on one hand this last 12 months feels like an eternity but the other it has gone so fast my head is still spinning from it all. 

I just hope I can start making sense of it all and get back to the person I was before , the crazy,  fun loving , get up and go gal who got everyone laughing and dancing because if I don't find her soon I fear I'll never get her back.

I'm taking on board what you've said and will try and look forward with positivity. 

Again thankyou for your help and kindness..

Hi again Trv22 , I know exactly what you mean about the time that passes, I’m almost at the 5 year mark & hopefully due for discharge next month & in some ways my diagnosis & treatment feel as though they happened to someone else, it feels a million miles away but as soon as I get to the hospital or start thinking about specific things that happened during that time it all comes crashing back like some kind of bad dream & could have happened yesterday. One thing in particular that seems to trigger me is (silly as it sounds) the ceiling of the CT scan room! It has a large Perspex tile every so often that is like you’re looking up into a beautiful blue sky with white fluffy clouds & cherry blossoms, this was also on the ceiling of the radiotherapy room too & it immediately takes me straight back there!

This experience of a cancer diagnosis & subsequent treatment, however strong & resilient you are as an individual, leaves us all with a level of trauma. I really hope your counselling sessions help you find the person you were before any of this happened, it’s awful that you’re feeling so lost. It’s worth adding that if it’s not a cancer specific counsellor you’re seeing already & you find you’re not making much progress they are out there & also trauma specialists too so please don’t give up on the girl that had all that fun going on, she’s still in there somewhere. 

We’re always here when you need us. 

Nicola 

Hello Trv22

I am so sorry that you are still having problems with this after undergoing treatment and please please, don't ever consider yourself a failure; you are a warrior with wounds that are still healing.  But I can totally understand your disappointment that you haven't better control a year down the line.  I understand that it can take at least three months of constant daily exercise to regain muscle control, and if you haven't been doing them very long it would certainly be worth holding off on further treatment at the moment.

I realise it must have come as a shock to have the consultant talk about a stoma, but he has put that there as a option should your control not improve; there are quite a few on here who cope very well with a stoma and don't give it a second thought.  But see how you get on with your exercises first.

Unfortunately, or fortunately, depending on how you view it, about 50 percent of people never have to hear a cancer diagnosis and many have no ideal of the trauma and lasting impact that it has on the person hearing it or being treated.  I am pleased that you are seeing a counsellor and hope that s/he can help control, if not put to rest some of the demons that remain.

When people ask my daughters how I am, fourteen months out of treatment, they say I am convalescing.  And I am.  Still trying to get my energy levels back up, get over the aches and pains and napping sometimes during the day.  I am just sorry that your friends and family don't realise the toll it has taken on you.  We do.

Sending big hugs.

Irene xx

Hello, i am really sorry that you are struggling, I am also struggling, my bladder is overactive and every time I have a bowel movement I have to lie down and take a pain killer.

My treatment finished 13 weeks ago Ann’s I am in remission but this feels like a life sentence of pain, if you need a chat I am available Jo

Hello Trv, I haven't been on this forum since the beginning of April because I have ongoing after effects, totally different from yours, but I sort of felt I didn't want to scare people just setting out on their journey. I have hideous pain a lot of the time and my GP has put me on to Gabapentin because she says it's nerve damage and pain. This was 3 weeks ago and it takes 4/6 weeks to really get into the system and work and I pray it does. I finished my treatment on 2nd January and here we are on 16th May and I seem to be no further forward, when the radiologists told me ad nauseam that after 2 weeks the pain would peak and then I'd be getting better. I'm going to post a long post somewhere on here as I was in touch with several ladies and have been out of touch since 2nd April. Good luck with all, keep your chin up, we're all here to support you, even if others aren't. Bee x

Hello Emilirose, I'm just the same, after a bowel movement I'm in such pain, but I'm definitely better than I was six weeks ago, so I force myself to wait untuk I've had 3 bowel movements then I take 5/6mls morphine. I have prunes in apple juice (from Waitrose) and a Laxido every night - can't risk getting constipated. My treatment finished on 2nd January so like you, I feel it's a life sentence of pain. I'm on Sertraline (anti depressant) and Lorazepam for anxiety - you're not alone - we're all here to help you, Bee x

Hi Suz , just wanted to send some positive thoughts and vibes for you today and hope all goes well ️.

Hugs

Elaine x