This blog post is part of a series of patient stories taken from interviews conducted with volunteers who had responded to the All.Can patient survey. Some information has been changed to protect anonymity.
It started with physical complaints: I had difficulty going to the toilet, severe stomach pain and blood loss. The doctor told me that it was stress. They couldn’t find the cause of my pain, which lasted for about a year. I lost a lot of weight. I didn’t feel taken seriously – the doctors sent me home all the time while I had severe pain. According to them, everything was fine.
When I really couldn’t deal with the pain anymore, my GP finally sent me to a gastroenterologist. I was in hospital for 10 days, but nothing was found so I was sent home again. It got worse every day. I lost a lot of blood and couldn’t stand on my legs anymore. I went back to the clinic and ended up at the gynaecologist. They did an ultrasound and saw that I had polyps in my womb. I immediately underwent surgery, and they found a lot more than just the polyps. There was a tumour in my uterus with metastases to the intestine and bladder.
‘I was just happy that I knew what the problem was’
The day after the operation, the gynaecologist told me I had uterine lining cancer. No one else was there at the time. It was an intense conversation, but I was just happy that didn’t have any more pain and that I knew what the problem was.
After the diagnosis, I was assigned a cancer nurse who gave me all the information and told me who I could ask if I had questions. She also told me about the side effects and what I had to consider. I found her very useful, but I had to make appointments with her myself.
I had six preventive chemotherapy sessions, and they removed the tumour and part of my gut. They also shortened my bladder and removed the urethra, and I had a complete reconstruction.
‘The most difficult thing was returning to daily life’
I felt that I received enough information about my treatment plan and I was informed enough about the side effects of my treatments – but, unfortunately, I haven’t received any advice about financial aid. I had to pay for all the medicines myself. I still can’t work. My parents and my sister support me. I don’t have a driving licence so I’m pretty dependent on other people.
The most difficult thing was returning to daily life after the treatments. I had psychological support in the hospital during the treatments, but I really missed the emotional support after this period.
For me, there was far too much time between getting the symptoms and the diagnosis, so I was in unnecessary pain for a long time. The GP and intestinal specialist didn’t look any further and sent me home sick all the time. I would like to see specialists do their best more to find the cause of a particular complaint, so that patients don’t have to be in pain unnecessarily.
To find out more about the All.Can patient survey project and to download the full report of findings click here.* Names and some other identifying elements have been changed to protect patients’ anonymity.