Hi, I will try not to be too negative here. I am fortunate I am in remission from bowel cancer. I really thought I had approached cancer diagnosis with a positive attitude, it was not going to get me down. Unfortunately cancer surveillance has had a very big impact, and this has got me down. Just wondered if other people had a similar experience, I hope not. I had to terminate cancer surveillance after three years as I realised just how depressed it was making me. The things that upset me were that I did have an appointment with a colorectal nurse specialist every 6 months, however this was always a quick phone call, even the first appointment. The nurse I spoke to would be very pleased if bowel function was good, but was indifferent when I stated I was concerned about my mental well being. The only time diet was mentioned was when I was seen by a nurse specialist while I was seen in hospital just days after the hemi colectomy. I had to have bloods done for cancer markers at first every 3 months, however I was not told the results. I was in hospital about 6 weeks after one of the blood tests, I did ask a doctor the result, it was ok. I did ask why we were not told the result, only to be told that they only bothered to let the patient know if there was a problem!
I had been told that if I needed to I could contact a colorectal nurse, however first time I needed to speak to one I was actually told I had been discharged from the team and therefore I could not speak to a nurse. No one could tell me why this had happened. I was a few months later put back under the care of this team. Some time later I had a change in bowel habit so thought it important to speak to a colorectal nurse, however first I went through admin person and had to describe in detail my problem with her, for that person to tell me there would not be anything wrong as recent blood test and CT scan were ok.
After that incident I never did contact colorectal nurses again and found that I actually dreaded the routine phone call from them, there seemed to be no point. The last CT scan I had once again I only found out the result 3.5 months after scan when I was contacted by that team after I had notified them I wanted to stop cancer surveillance. The whole experience has made me feel like a tick box, and definitely not a person who has gone through quite a lot of trauma.
