Strap in folks, this is a fun one.

Yesterday at around midday my almost 75 yr old Pa started feeling extremely fatigued, weak all over, hot and, in his words, very odd.

He rang my sister who lives 5 minutes away, she got there and immediately called an ambulance. They were there in sub 10 minutes and checked him over. He couldn't even walk in a straight line. They took his blood pressure and it benched 199/98. They said he had a possible stroke and needed to go to A&E (ER for my US friends). Not living more than 10 minutes from the local Medway Hospital (major hospital) they went there. It took 3 hours to get to being triaged. The time was 4:30pm when they're told that the closest Stroke clinic is Maidstone hospital, 40 minutes away at rush hour.

On the way out, they saw the paramedics that had been out to respond and they called ahead to Maidstone Hospital so he was on record. That did nothing. When he got there, it took another 2 hours for them to do another triage, then another 2 to do blood work. Then the stroke unit refused to take him stating that they didn't think it was a stroke. After politely arguing the case my sister had to remind them to do his blood pressure again. At this point it had come down a little. He is still really weak and couldn't hold a cuppa without spilling it.

Eventually they relented and did a CT scan. When they checked the results they said it wasn't a major stroke but could have been a posterial stroke which wouldn't show. They couldn't do anything else there and should go back to Medway. At this point it's midnight. At 1am, my sister is checking my dad back into Medway A&E. 1.5hrs later they're through reception and sitting in waiting room 3 with 29 other people. I headed down at 5am to relieve my sister. Between 5am and 11am they took his blood pressure twice and we waited in the waiting area with everyone, my usually fit and healthy dad in a wheelchair. He's exhausted, had no sleep and was genuinely scared, which he never is.

It took until 2pm to see a doctor and we had to put in an official complaint to the nurses liaison team about the handling to even get that far. An hour later and then he saw a consultant who gave him a thorough check.

Concerned, the doctor said he wants an MRI scan performed, but to do this he was being made an outpatient and sent home. He would get an appointment and come back in the next few days. Why? Because if they admitted him he would join the inpatient side and they have 1 MRI scanner. He may not have been seen for up to 2 weeks and would simply be taking up a bed. As an outpatient the team has 3 MRI scanners and he will be seen quicker, plus less likely to pick up an infection from the hospital. It took another hour and a half after this, plus chasing the team to get them to take bloods and remove his cannula so he could go home.

Sorry for the long read, but how backward and broken is this system?

They still don't know if it was a stroke or a brain degenerative issue, all we know is he is home, cannot look after himself or my disabled mother and the whole situation sucks.

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.