I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy (yet, that may change). They are giving me chemotherapy (capecitabine and irinotecan) and immunotherapy (cetuximab).

Prognosis is difficult, but if everything goes well I have about 18 months.

I've had 6 cycles of treatment. I had a re-staging PET CT scan and the results were very good.

But, here's the thing: chemo & immuno therapy suck. I don't just mean "I feel a bit bad sometimes", I mean "I feel awful most of the time."

We've just about got nausea under control, but those meds cause constipation and that's causing problems with my stoma. And because the nausea meds are only used for the first week it means the second week I have problems with fast output, and that's causing other problems with my stoma. My stoma team and my oncology team are not particularly joined up. In theory I can build in laxido for the first week and loperamide for the second week but that's complicated because side effects are so variable. And that's just stoma output -- there's a bunch of other stuff around pain, fatigue, skin toxicity (I'm not allowed in the sun, even on bright but overcast days. I have to use three different creams, but not too much of any of them, and they're not compatible with each other), loss of appetite, etc.

One example of how healthcare isn't joined up and I'm getting conflicting advice (there are lots of these): My stoma team want me to wear a hernia support belt to prevent my hernia getting worse, and to help my stoma work properly. But this is a tight broad elastic belt going round my lower abdomen, right where my diaphragm is, and so it makes it harder for me to breath. My physio doesn't want me to wear the belt because it's interfering with fatigue treatment (which is "do more stuff, but do it slowly, and build in breaks, and FOCUS ON YOUR BREATHING"). My oncology team have no opinion and are leaving it to the other teams.

I know some people just want more life, and they don't care about side effects. "Do anything you can to give me more life". But that's not me. I'd much rather have 3 months of mostly feeling okay and then a month of active death over a year of mostly feeling fucking lousy and then a few months of active death.

I don't know how to talk to my family about this. I have spoken to my care team and they're giving me all the options - (1) continue chemo and immuno therapy on 2 week cycles until I die or until it stops working, and try to buidl in better support meds. (2) continue chemo & immuno on 2 week cycles, but build in breaks (3) stop chemo & immuno and focus on pain relief.

Some tricky decisions to be made.

Last year (June 2022) I was diagnosed with colorectal cancer. I had surgery (which left me with a permanent stoma) and I had a bit of adjuvant chemo to kill off any remaining cells. I've been discharged from oncology, and I've started my 5 year surveillance. Staging is complicated but my I was pT3pN2bM0 (tumour was stage three, I had lots of lymph node involvement, but no metastasis).

Alongside that I've had problems with gall stones, starting in April 2022, and ending this year when my gall bladder was removed.

When I tell people about the cancer they pull on their serious face and say things like "oh no how awful hope you're okay glad to see you're doing so well now it's good news that you're in remission", and when I tell them about the gall bladder they're kind of baffled and not at all concerned.

But here's the thing: cancer was not such a big deal. I do have a permanent stoma, but for some reason my brain has disconnected that from being a cancer thing. I had a relatively gentle chemo regimen (short, and it was CAPOX which is less rough than other meds) -- don't get me wrong, chemo SUCKED, and left me with neuropathy in my feet, but I got through it. When I compare that to repeated[1] hospitalisation for cholangitis (a gall stone stuck in a bile duct causes bile to back up and that causes pretty severe problems), well, those repeated hospitalisations were a much bigger deal for me.

English NHS hospitals tend to have dorm wards. In the ward I was on there were 6 beds to a bay, and 5 bays to the ward, and then a further 6 or 7 single occupancy rooms. Some of the bays were smaller, and had 4 beds. Once the hospital was very full, so I spent a night in a bed (proper bed, not a trolley) but in the ward corridor. I spent over 60 days in hospital for the gall bladder stuff, and just 7 as an inpatient for the cancer. (And Sartre was right, hell is other people ).

There are lots of health forums online and I always feel deeply uncomfortable in the cancer forums. I feel okay in the ostomy forums[2], but I don't use them because they're all a bit odd.

I dunno what the point of this post is. Maybe it's "sometimes cancer is treatable and the person isn't particularly bothered by it", or maybe "people with cancer want support, but sometimes that support won't have anything to do with cancer".

[1] When a stone gets stuck they need to do some emergency work to stabilise you and remove the stone. And if you keep getting stones stuck they want to remove your gall bladder. There's some discussion about when to take the gall bladder out. Hypothetical Bob has a stone stuck - you stabilise him, so do you take the gall bladder out then (when he's still recovering) and then monitor him for a few days and discharge him home to fully recover? Or do you stabilise him, then discharge him home to recover, and call him back for planned surgery to remove the gall bladder? Evidence is inconclusive about which is best, so there's a bit of a lottery depending where you are in England. My local hospital took the later approach. The problem was that i) I had cancer, ii) My gall bladder was very active in kicking stones out and iii) we had several Covid pandemic waves causing huge disruption. These meant that by the time I had recovered enough to have the surgery, and they had a space on their surgical list for me, my gall bladder had kicked out another stone and that reset the whole thing again. They gave up this year and took my gallbladder out.

[2] Online health forums can have this really weird dynamic. English speaking forums are usually dominated by Americans, and Americans fall into 2 groups: 1) People with bad or no insurance and 2) People with good insurance. When someone says "I'm having this problem" the replies from the first group will all be along the lines of "go the the vet and buy this fish medicine" and the second group will be "here's a huge list of tests and products to use".

EDIT: I forgot to mention, I am in England, and so I am very fortunate because all treatment is free and a cancer diagnosis opens up quite a lot of support.