5 months post treatment - still in pain

Hi Neuro72,

I’m sorry that you are having such a rough time. That’s a long time to be in pain and having blood and mucus. Sounds absolutely draining for you.

 I hope that your team are supporting you although clearly you are still getting breakthrough pain. I also hope that your scan is early in April as you clearly need to know what is happening with the ac. 

I hope you get some tips from the forum and that things will improve for you soon.

Big hug to you xx

Hi Neuro72,

I’m so sorry to hear about how you’re doing after five months (I’m also post treatment five months and I can sympathise hugely as it’s super tiring traumatic painful and some days are so hard)

I do hope the treatment team have a good plan in place for you post scan next month, sending positive hugs your way. The (not) being able to sit down is also so hard isn’t it?

I’m hoping others with similar experiences to yours will also pick up on this thread and reach out.

hugs Nell

Hello Neuro72

Your experience sounds just awful.  At five months out I was feeling on the way back to normal and I am so sorry that this hasn't happened for you.  I have no experience of seeing my tumour as it was submucosal and wasn't aware of it shrinking or breaking up.  But to still have to be on morphine and having to lie on your side sounds really extreme.  Has your treating team given any indication how long you are likely to be like this?  It does sound as if surgery would be ruled out as any intervention may damage the sphincter muscle.

I am really sorry I can't offer any shared experience and am truly stumped as to what tips to offer.  I am hoping that someone with similar experience will come on board and see your post and be able to help.

I am sending lots of healing good wishes that you will turn the corner very soon.

Irene xx

Thank you lovely. My GP phones me weekly to try and get on top of pain. Scan on the 9th so hopefully a resolution in sight xx

Thank you lovely. I never realised how much I actually sat down before! Managing short 10 minute stints at the minute. Unfortunately unless there is a complete response I have to have everything removed including my anus so I’m hoping so much for a full response x

Hi lovely - I wish I couldn’t see it - it’s not a pretty sight! Unfortunately unless I have a complete response they will remove rectum and anus. I’m really hoping to avoid that. I have a very real phobia about my skin being broken. No tattoos or piercings and the thought of a stoma feels just too much at the moment. 

My GP has stepped up in the last few weeks and is calling me to check on my pain response. I’m hoping the latest increase is the magic number - just finding that balance between waiting for the next lot of pain relief and managing to do more than simply exist. That’s how I feel at the moment. I’m just managing pain and hygiene. Side sitting and lying isn’t great but since Friday with the increased morphine I have found a golden 2 hours in the morning when I am pain free and I can actually do things! xx

Hi ive got a stoma and am having APR surgery it wouldn't be my first choice but there are people onthis forum that have had both and ate thriving xx

Hi lovely. I know it might be the only option for me but I really have a phobia about cuts or wounds and I’m struggling with the thought of an opening in my tummy. Like any opening of my skin I struggle a lot with. Even taking bloods. I know it may come down to a life saving procedure and I get that and I am telling myself that at least I have it as an option but mentally it’s very difficult for me x

I can completely understand I would feel the same way too do keep in touch x

Hi Neuro72

I'm sorry you are having such a rough time. Part of my tumour was external but I  couldn't feel it after about 2 weeks into treatment and I haven't looked at it since treatment. I don't have anything helpful to say but sending hugs. Xx