Freaking out.

Hi Blondiebird, A warm welcome to the Group no one would choose to be in but the people here are very supportive as you will find out soon. I have been clearing cupboards and sat down for a cup of tea and saw your post. I am so sorry to hear you think information has been kept from you but contacting your nurse or even your GP could put your mind at rest. My husband had bowel cancer in 2023 and had major surgery to remove a large part of the colon. He was lucky as they found it early. One year ahead they were taking CT scans, colonoscopy etc to make sure all was still fine when a tumour was seen in his bladder. He had surgery ( although nothing major) in Dec last year and is now having targeted chemo for six weeks. You just never know the minute on this roller coaster. I have a different cancer but do have the Braff mutation gene. At the time I was told it was a good thing because it could maybe give me options! I am well passed my predicted sell by date, as are lots of others here, so never give up hope. Even the professionals don’t know how long any of us have left to live!

I hope your nurse calls you back soon, please let me know! 

Have just got off the phone to my nurse. After going through all my notes and calling several people, she said its a mistake. She apologised profusely and said she has reported this and is getting them to change my notes. Bless her, she was really upset that this had happened to me. It's been a day I'd rather forget. X

Glad they got back to you, and relieved it was just an error. Can absolutely understand why you'd be freaking out about that. 

Lex - xx

I am so glad that you chased this up, glad that it was an error, not something they hadn't told you about. I'm not surprised that you were freaking out though. It is so useful having a nurse that can look into these things and chase them up for you.