Hi there all
I’m caring for my incredible husband with Stage 4 bowel cancer with liver and lung mets. He was diagnosed with Stage 3c in Jan 2019 but we now know at that time his 7cm tumour, very close to the rectum, has spread its microscopic seeds.
He dealt with 6 months of radiotherapy and also Capecitabine and Oxiplatin. Then a resection to give what we hoped was a temporary ileostomy. All through this he worked and kept up a rigorous fitness regime - he was 49 at the time of diagnosis.
The following year -2020 - was fantastic - pretty much full quality of life except that sexual function had been severely compromised by the radiotherapy and he had some peripheral neuropathy from the Oxiplatin and he struggled emotionally with the ileostomy which was hugely disruptive to sleep
Then came the scan and the totally devastating news his cancer was now incurable as it had metastasised to both liver and lung and recurred at the original site. He sailed through a lung resection and a liver resection and was out of hospital in around 24 hours following both those keyhole procedures and back running!
6 months later - in Oct 2021 he has a massive abdominoperineal resection which removed his anus, created buttocks from his thigh muscles, and changed his ileostomy to a permanent colostomy. He was off pain killers within 4 weeks and back snowboarding by Jan. Sexual function completely gone and urinary control drastically altered. He is is some pain but he isn’t on any pain meds and he’s currently running or doing yoga every day. The colostomy is 10 x better than the ileostomy and he’s meticulous and has had no problems with it at all. He’s slim, muscular, extremely fit and currently earning a great salary as a software developer for investment banking! Pretty much full time still.
But, the cancer is back again. Scans this summer have revealed many spots of activity, 3 in the lung, 2 in the liver and more in the pelvis. We are beginning 2nd line chemo in Sept and I am absolutely terrified this is going to be the last leg of the journey. I read that secondary chemo isn’t great at stopping it returning in the future and also that Folfiri and Cetuximab will affect hair, skin, weight, and make a person quite ill and possibly not be tolerated in which case there might not be further treatment options - though it seems there is Lonsurf as a third line chemo. Obviously I keep hope high for my husband and remain positive for long life for his sake though it sounds increasingly hollow when we discuss our long term future together. My husband alternates between extreme panic and huge mental anguish and then will be very very positive and say he is hopeful of living with this many many years.
I have not read of many stories at all where the person has been living with Stage 4 colon cancer more than 5 years, obviously our incredible Dame Deborah James got to 5.5 yrs, and there is one other man I’ve read of who is now at 7 yrs but he is very poorly indeed and may not have much time left as his treatment is over.
if there are any long term stories here for stage 4 colon cancer please share or point me in the right direction. Thanks for reading.
https://community.macmillan.org.uk/cancer_experiences/supporting-someone-with-incurable-cancer-forum
ThisIsJustGreat I do think it very individual and if he has found a way to manage his situation then that’s positive in itself .
I have been thinking about your situation a lot today as it’s two entirely different needs caused by one very sad illness and I can see why you need to put some safeguards around your situation too . My mum was like your husband and part of me initially wanted to dismantle that so we could prepare but as things moved along I could see she needed it to keep enduring the treatments and I stood back from it .
Your situation is different in that’s it’s your husband , home and life that’s directly affected and I feel for you ,
I have linked in another forum if you have not stumbled across it . It’s entirely for relatives not patients . They have their own one and it’s a place to discuss the more difficult aspects of this disease with others in the same situation . Might not be for you but you might get to connect with others in the same situation but perhaps a different primary . It can be a good resource .
The CEA is a protein that is tracker as a tumour marker in bowel cancer . It’s not always reliable but you can compare it from before chemo to during chemo there they hope to see a downward trajectory .
It might quietly give you a feel for it .
Take care and I will send you a PM over the weekend . My parents are keeping me busy this week ! 
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Take care ,
Court
Helpline Number 0808 808 0000
