Wanting to say hello, diagnosis of bowel cancer this year, struggling with 'what next'?...

Bamo 2 days ago

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I am fairly 'young' but struggling with 'life (hopefully)after cancer'. This week has been tough, as my prognosis has troubled me & it was recommended by my oncology nurse when had a meltdown of sorts, to visit this resource, so here I am!

I have had crohns disease for 35 years. Very much approached that as "is what its" & got on with full, mainly happy, life. Travelled extensively, lived abroad for many years ,2 perfect pregnancies & healthy children, now young amazing adults, successful career that never took sick day from, barely 1 day a year despite many a 'flare up" of disease. Would just take whacking dose of steroids & get on with it! I always said how lucky I'd been as knew of many others who'd had needed surgery/ stomas etc & there i was cruising through. Last year things changed. My symptoms changed.

I had no warning, as was usual with crohns , sudden onset severe abdo pain and accompanying vomiting. Tried desperately to cope at home/ see GP but so severe landed in A & E numerous times, on IV antibiotics / antiemetics/ fluids/ CT/ MRI, sent home. One week on gastro ward last year ,had sygmoidoscopy, each time scanned told had " diverticulitis flare on background of CD". Finished ( full time) work Dec 22nd last year, admitted next day. Horrendous pain/ diahorrea/ vomiting ( addition of faecal vomiting to mix it up, was like exorcist, poor baby doctor that night called to me!). Missed xmas/ NY/ sons 18th, etc.

In 3rd week surgeon ( lifesaver & my best friend !) agreed to perform right hemilectomy though told " extremely risky" due to inflammation/ strictures. As soon as conscious, he was there telling me had found" something suspicious ", but removed 'it' & lymph nodes. Thanks to high analgesia IV, sailed through recovery & too delighted to feel immediately well with none of those debilitating symptoms to linger on the 'suspiciousness'! The day after returning home, 5 weeks from admission, he called to say histology confirmed stage 3 bowel cancer with lymph node involvement. What the heck? Though knew higher risk of cancer having crohns, it doesn't happen to you, does it?!

Had 3 awful months of maximum dose chemotherapy due to lymph node involvement. Truly brutal treatment, that remains an awful memory, so much forgotten due to the 'chemo fog' which is SO real & sometimes continues (people say " remember you said this", remember we did that and have zero recall!).

Am extremely grateful all recent blood/ CT/ MRI & finally 3 week ago " gold standard for BC" colonoscopie ( what another stressful day that was as surgeon said would tell us definitively if chemo had 'mopped up' all cancer),I'm now 'all clear'. Am SO greatful for amazing care and " Very close monitoring " to come, but.... I'm doing so well externally, back to work, some normality, etc, same ' bubbly' personality but I'm so quietly scared!. And friends/ family less' around' than they were as I appear fine & they've got their lives to lead too after propping me up for so long.

It's where our minds take us after cancer I guess? The realisation we are not immune, facing our mortality while keeping up the 'cured' ( but knowing higher risk of recurrence) facade....don't know if this rambling makes any sense, but better out than in & thinking of you all too. In the club we never expected to join! I'm glad to be here despite the challenges we all face. I think ' lived experience ' with others is vital as , as supportive our circles around us are, no one can truly empathise till they've felt these emotions themselves .

Also the not wishing to be more of a "burden ' is super important for me after needing and receiving amazing support during the surgery/ diagnosis and chemo time. Life has to go on for them as well as me but the uncertainty remains, so being here I hope will help with that side of life after cancer, though fear of its unwanted return! I've been told that if 'it's going to come back will be within the next 4 years of this monitoring. Yes, some reassurance from the bloods/CT/MRIs to come but know that colonoscopie is the most precise indication of the absence of dreaded cancer again & in discussion recently with surgeon he agreed to annual one as opposed to 2 yearly. I believe my cancer was 'brewing'/ present for many, many months before discovery due to the change in and severity of symptoms . I hadn't had a colonoscopie for 2 years and multiple MRI & CTs did not show tumour. I've been told by surgeon and gastroenterologist that due to crohns " severe inflammation and strictures " 'it' was concealed. Surgeon removed 35cm of disease and lymph nodes during hemicolectomy which was revised to 'oncology resection ' when tumour seen once laproscopy abandoned & incision made. I've been left with a humongous post incision abdo hernia too which they've agreed to operate on though again, risky due to location. I'll take the hernia over still having cancer obviously, but I seriously side on look full term, joke am expecting the 3rd child I'd never wished for...

I'm so aware of the pressure on NHS services, I've worked in the medical sector all my life and continue to, and, as said, am beyond greatful for my care past and ongoing. But is the fear this will be missed again & potentially spreading further than 'just' my lymph nodes if this were to happen. I am mindful we cannot live thinking the worst/ negative outcome is a given because we have had this condition once but its so tough at times not to isn't it?!

I am doing well day to day and able to distract well, I have a full life and I'm delighted to be living it again,if at a slower pace which was probably needed! But other than monthly colonoscopie ( how fun with that preparation eh?!), how do we ever reconcile the non presence of this hideous disease?

Thinking of you all and all those still going through the brutal, but hopefully effective treatment . Take care all x

Peter E 2 days ago

Hi Bamo

Depends on staging and treatment plan....I had colorectal cancer diagnosis in 2017, anterior resection to remove tumour....luckily no chemo...given the all clear in 2022.

Try to stay off Google....only causes unnecessary worry.

Take care

Peter

Bamo 2 days ago in reply to Peter E

Hi Peter, thx for the reply. Is my post coming up clearly as my end it's not & was a saga!.? I was diagnosed with stage 3 BC and 3 out of 18 lymph nodes positive for cancer. Due to LN involvement I had to have chemo for 3 months after right hemicolectomy removed full tumour. My 'margins' were clear so had not spread to other organs ,apparently liver usually next, 'just' lymph nodes . They call it 'adjunct chemotherapy ' or " belt and baces" to mop up any more cancer cells. I've got 'extra mural lymphatic invasion ' & this is what terrifies me currently, for the future, though currently cancer free. TOTALLY agree re swerving Google as hard as it is, I just feel due to hideous chemo fog effects I haven't absorbed fully what I've been informed by surgical/ gastroenterologist team! And while I'm lucky right now, I'm so fearful of the future as told if going to come back will be in next 4 years while their monitoring me closely. Just doesn't feel closely enough as was missed for so long & did spread , it could again between tests is my fear..

SarahH21 2 days ago in reply to Bamo

Hi Bamo

I've asked one of the Macmillan team to fix the formatting for you, so don’t worry-it will be sorted soon.

Sarah xx

Cervical Cancer Forum

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

Bamo 1 day ago in reply to SarahH21

Thx so much Sarah looks like it's sorted now but was driving me bonkers as so pleased to find this forum & wouldn't post correctly! Thanks again x