What now?!

Hi Bamo ……. overthinking anything specific?

I am fairly 'young' but struggling with 'life after (hopefully) cancer'. I've had 1 glass of red ( unusual, rendered teetotal this past hideous year, but hoping i can sleep after it for once!) and smoned the courage to come here,  having been recommended by my oncology nurse this week when had a meltdown of sorts! 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 hadurgery/ 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 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 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 but all blood/ CT/ MRI & 3 week ago " gold standard for BC" colonoscopie 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 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 wanted to belong to xxx

Hi again Bamo you definitely have had a challenging journey…… I do hope that you find the community a safe place to get stuff out on the table and find support.

I totally understand where you are coming from as I have been on my incurable cancer journey for over 25 years…… My story is rather long and complicated but I will save space in your thread but if you want you can hit this link and See my story 

I know well that navigating the post treatment journey and dealing with the ‘what if’s?’ is hard but you may want to have a look through the discussions in our dedicated……

     Life after Cancer

.…… support group.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Always around to chat.

Thanks so much mike, 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! You, too, have had it tough and for SO long, your a strong celt like myself! Take care x

Oh the Celts are made of hard stuff….. helped in my case by some Iron Bru…... Black Pudding and some Single Malt 

As you investigate the community further you will see from THIS LIST we have support groups covering most cancer types….. although some very rare cancers have been grouped in their own group.

We also have various Cancer experience forums…..   Whatever your experiences, we have a space for you.