I don't feel like a cancer patient
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.
Gallstones can be hellacious. For several years I had gall bladder attacks that were debilitating. The worst one I spent on the floor of my bathroom, alternately shivering and then throwing up until there was nothing left to throw up. That left me with dry heaves for the last couple of hours.
A week later, a stone lodged in the bile duct, and my piss turned dark and stools were greasy white for a couple of days.
For some unknown reason, my attacks stopped entirely. I haven't had one for seven years now, so I feel lucky to have gotten through it without surgery. I did change my diet, and severely restrict fatty foods now, so maybe that helps.
I experienced something similar: a year of frequent gallbladder attacks, ending after what I assume was a day of a stone passing. Knock on wood, it's been a couple years attack-free. I've slightly cut down on saturated fats but otherwise haven't changed my diet too much (I eat decently healthfully).
In retrospect, the biggest lifestyle difference I noticed was reducing stress; when I first started experiencing attacks I was under a lot of stress. By the time they stopped, I had removed some stressful circumstances and was improving my own response. I haven't found much strong evidence supporting this (mostly just 'holistic' type websites), but of course acknowledge that medical research is ever-growing.
I'd be curious to hear if you (or anyone else reading this) has noticed something similar between high-stress and gallstones?
I wasn't in a stressful situation, but I have no doubt that stress can adversely affect health, especially with blood pressure spikes and skin disorders. Don't know about gallstones.
I kinda understand in some ways with mental health. You don't neccessarily feel like its a chronic thing when its not actively ruining your life. Doesn't mean its not always lurking in the backround, but also doesn't mean you want support from every person you encounter.
And to expand group 2: Even insurance that seems good on the surface can get ugly real quick with cancer. Turns out insurance companies hate actually paying for treatments doctors advise, and not just the cheapest option.
If you're diagnosed with cancer in America and intend to treat it, a bankrupcy lawyer/accountant will be almost as useful as a doctor for your family to figure out how to discharge your inevitable debt load with minimal loss.
I was diagnosed with colorectal cancer this June. I’m currently doing chemo…then will do radiation…then will do surgery. We’re hopeful I won’t have an ostomy bag but you never know.
Hi, I just wanted to pop in and say "I hope you're okay". Diagnosis and treatment is rough.
People have very different experiences with stoma appliances. I do not want to in anyway minimise your feelings about that - your feelings are obviously valid. But, if this is helpful, I like having the bag. There are some inconveniences - it's pretty major surgery, and the amount I can lift is very restricted. But otherwise it's great.
But, please do look after yourself. Chemo sucks.
Thanks, I appreciate hearing about your experience. I think part of it is the fear of the unknown. I’m hopeful that once the time comes it will be easier once I fully understand how it all works.
Appreciate your kindness! You take care as well.
I was diagnosed with Papillary Thyroid Cancer in July of this year and I had a total thyroidectomy and a lower and middle neck dissection to remove my lymph nodes in that area, as it had metastasized on to a few of them as well. The rest of my body has been scanned and is free of tumors. Even with the small amount of lymph nodes it moved too, I feel the same. i had a major surgery and then went back a few days later with swelling so bad they couldn't get a breathing tube down. I almost died.
I'm pretty young as well, so it came as a big surprise.
My cancer is extremely treatable and I do sometimes feel like it's not even there. It's an odd feeling for sure, even after all the complications from a major surgery. The last part, after I'm healed up, is a Radioactive Iodine treatment. It's nothing like chemo, so I really get this feeling that I have cancer, but its not cancer cancer.
Also, the speed and care I've received is wild(from genetically testing my tumor to have surgery in less than 3 months), I'm in an extremely progressive state and we have attracted some really wonderful doctors. Location is everything when treating an illness. Everyone is so professional and knowledgeable that I truly feel secure being treated. I got lucky, as I had moved here less than 3 years ago from quite a backwoods area.
Hi! Hope you're doing okay. Thank you for describing your experience. And this is how I felt - I have cancer, but not cancer cancer. I feel very fortunate. I see people with awful experiences. And when friends and relatives talk in hushed tones I feel a bit of guilt because my cancer is very treatable.
I had the same gallbladder issue and I feel you. My story spans a total of five years, an emergency ERCP, and the eventual surgery to take it out. This too was during the peak of COVID (in late December, no less) but I had no other health issues to deal with at the same time, so my heart goes out to you. I'm happy to hear you're feeling better now, despite having some remaining health problems.