My brother (who has learning difficulties) was diagnosed with bowel cancer in Oct 2016. He is 62 very mild mannered but had not told anyone he was having difficulties in the toilet. He lives with my other brother who (cares for his daily needs) isn't really very clued up about things and even though he had noticed he was spending more time on the toilet hadn't mentioned this to me. I just happened to be visiting when he was on the loo and noticed he was in there a long time. I then began asking questions and decided it was time for a visit to the Doctor. I work full time and then some so I needed to have an appointment outside of work time. Even though my brother cares for my disabled brother I could not get him registered as a carer because the system somehow thought he could manage on his own (he can't) so there was no other way than for me and my husband to pay for them. You can see my job is important.
My family have always cared for my brother and he qualified for disability allowance but at the lower rate which meant no care. When my mum died and that left my 2 brothers I filled in the forms to push him onto the medium/higher rate but no my Doctors did not respond to the forms and my claim was denied.
I had to ask for help again from the Dr when I needed the housing benefit disability form filled in. This time they did respond and that set off a flurry of activity with disability nurses coming etc. He started going to day centre and all was good for a few months. The disability nurses discharged him saying there was nothing more they could offer and that was that. He continued to go to the day centre twice a week.
When I noticed his toilet problems I rang the day centre and asked if they had noticed anything. They hadn't but would watch out.
A couple of days later I had a call from the day centre saying he was on the toilet a lot. They had put a bag on the seat of the coach because they thought he had wet himself. When I asked my brother he said he hadn't. I managed to get an appointment with the Dr. We waited 1.5 hrs after our appointment time. We were the last ones in. Even the receptionist had gone home. We got in for our appointment to be told he couldn't be examined with just the Dr. Now we had to have another appointment. Now this was going to mean I was going to have to ask for time off work which was frowned upon if it was at a bad time in the month at work.
I managed to get time off. The Dr had to fit him in with the nurse and hoped she could nip out of appointments to examine him. She found a lump right away. From then on things moved without notice. I had phone calls asking me to turn up here and there for appointments. Next we needed a CT and MRI scan. We had those. Our local hospital which is 8 miles away is being closed down so we have to travel 35 miles which takes about an hour to get there because the roads are so bad.
We go there for the results of the scan. The consultant tells me the bowel is closing off and he needs a Stoma. He tells me there is also secondary in the liver. Not good news.
The appointment is arranged fairly quickly and I take him for admission. Stoma and biopsy. I have taken 5 days off work by now and told my boss the situation which to my surprise has told me - don't worry take off what you need. Big weight off my shoulders. We get to hospital to find there may not be a bed. We might be going home. I can't believe it. All that time wasted. Luckily we are in. The Dr is checking him in. Ah biopsy he says. No Stoma I say - biopsy as well. There was nothing on his notes. The Dr had to ring the consultant to check. It was confirmed Stoma.
He had the opp. He was in a ward with 5 others. Very crowded. He doesn't read but likes watching tv so Ibought the package for that. Very expensive. He only ever got to watch it when I came through on the night because he couldn't switch it on himself. All day he just sat staring into space. It as taking it's toll on the family doing an hour trip to hospital after work spending an hour there then hour travelling back. My 11 yr old was having to take her homework with her and do what she could in the hospital.
The problem we were having now was arranging some care for him when he got home. He had to master this Stoma before he could leave.
