Not really coping and scared

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In June 2020 I was diagnosed with stage 3 cancer near my lower Bowel. I was told I needed a colonrectomy that would mean a permanent stoma and basically removing my anus. I found the diagnosis traumatic. I then had 5 weeks of chemo plus the same period of time on radiotherapy. Most of the time on treatment I felt ok. But a month afterwards I deteriorated rapidly. Frankly I don’t remember. Great deal of what happened as I become doubly incontinent and was eventually admitted to hospital to treat the symptoms. I look back and whilst I have some sort of memory of being in hospital it was not the reality. I became (from what staff and my family told me) incoherent and totally dissociated. I can remember vividly thinking I was in prison and trying to get the nurses to help me escape. I was told it was the worse reaction people had seen in 10 years. After a week I was released but my bowels never went back to normal so sleeping and every trip to hospital became really difficult. I had my op at the end of Nov - clinically I think a success. But I keep having awful flashbacks to my time in hospital as I managed to get pneumonia and violent vomiting. Now been at home for about 6 weeks and mostly finding it an oasis of calm except for not sleeping and awful flashbacks. Coping ok with the stoma. Try not to feel sorry for myself but cannot help it at times when I think how my life was 12 months ago. Now been told I should have adjunctive chemo as “belt and braces”. I am so scared of becoming ill again, having to visit my hospital where nearly half the patients have Covid, sitting in a room in that hospital for hours having chemo - I know it’s the right thing to do but frankly I’m mentally exhausted. I know other people have things worse than me which makes me guilty but doesn’t stop me feeling like this. My GP prescribed antidepressants (awful and threw them away) plus sleeping pills (useless). Am I the only one who feels like this - what else can I do. I am down for counselling but on a waiting list. Thanks for anything helpful. Simon

Kareno62 over 4 years ago

Benth24. Hi Simon and a warm welcome to the board from me. Your post brought back a lot of memories for me. Although my op wasn’t as big as yours I was readmitted with an infection after it and then with a large clot in each lung after that. I’d been pretty gung ho about my treatment up till then adopting the bish, bash, bosh approach but the 2 week stays during the winter pressure with a drain in my right buttock was mentally and physically exhausting.

Im not medically trained but I’m wondering if the incontinence caused a water infection as I’ve heard of people being very confused and almost delirious with these? The violent vomiting is often experienced after Bowel surgery and called ileus - not pleasant but quite common.

So looking at some positives from your post - you’re home and coping well with your stoma which is good news. Could you discuss with your oncologist what the benefit difference would be between having chemo and not having chemo? Would having capecitabine (the tablets) alone be of any benefit? This would presumably just involve having your bloods checked before each prescription was handed over so less time spent at the hospital? At the end of the day they can’t make you have chemo but you need to be happy with whatever you decide.

Unfortunately cancer often rears it’s ugly head when you are feeling reasonably healthy and knocks the confidence that you have in your own body. The old cliche of time being a great healer is true and you’re still recovering so don’t be too harsh on yourself. Yes there will always be someone worse off than you but don’t underestimate what you’ve been through and if you want to have a bit of a pity party then you have earned one.

Im going to attach links to a couple of booklets about life after cancer. You might not feel like reading them just yet but they’re there for later. In the meantime have you thought about ringing the nurses on here and seeing what support they can offer you? The number is 0808 808 0000.

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

https://bowelcancerorguk.s3.amazonaws.com/Publications/LivingWell_BowelCancerUK.pdf

Take care and keep posting - it’s a club that nobody wants to join but the lovely people on this board will help get you through it

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Benth24 over 4 years ago in reply to Kareno62

Hello Karen, thank you so much for the kindness and info. I really pushed the oncologist on the chemo issue and there is a % difference in positive outcomes. I owe it to my family (and me) to go ahead but that doesn’t stop how I feel. I know Covid makes it all worse. But I really don’t want to wallow in self pity but I’m absolutely mentally exhausted - two friends have died of Bowel cancer in the last 9 months. I was so out of it our youngest child had to move out of the home as it was so distressing. My partner has been a rock but I know she’s struggling as both carer and now primary earner. I think we’re ok but it’s been a massive strain so I tend to be relentlessly positive with family and friends but by myself I sometimes just burst into tears. Which makes me feel pathetic especially when I panic. The inconvenience was caused by the medics who think was the radiotherapy (there is a proper term for it) and the consequent delirium was partially total dehydration and morphine. But I really felt I was going mad and that plus the physical stuff and other mental stuff still echoes and I find it really distressing. I always thought I was really resilient and had a career in dealing with some of societies more challenging people but somewhere that resilience crumbled. I am really grateful for the clinical care I have had and the second chance but just feel swamped at the moment,

Thanks again. Simon x

court over 4 years ago in reply to Benth24

Hi Benth24

Big welcome from me too . I would never underestimate how dehydration affects the body . My mum was seriously dehydrated. That in turned knocked off her electrolytes and stripped her potassium . It left her completely confused , unable to control her body function or stand . She has absolutely no memory of it which was a blessing that was as she thought she had been cuddling my husband, thought I was going out with an ex boyfriend. The list went on . She was heading off for a CT scan of her brain when the fluids thankfully kicked in .

We were really strict with her fluids after that experience. We lived and learnt and thankfully the rest of her treatment went by uneventfully .
I think coming to terms with your own mortality is hard but you will gather strength again .

Great you have popped on here and shared . It makes a difference.

Take special care ,

Court

Helpline Number 0808 808 0000