Hi everyone I hope you are all feeling reasonably ok today?
I just want to put my story out there and receive some thoughts on what I would like to happen going forwards.
at the end of July I had a large soft tissue sarcoma removed from my abdomen, a large part of which was attached to my large intestine. I also had my gall bladder removed along with a liver resection. It sounds a lot but I was lucky as potentially surgeons were considering removing one of my kidneys, the pancreas and spleen but all those organs were saved :)
However I ended up with a stoma and whilst I appreciate and understand why they did it, I absolutely detest it! I am so anxious about going anywhere in case I get caught out. Diet is hit and miss (I so miss eating a nice juicy steak) and hence it over produces especially in the afternoon / early evening. I am taking imodium like no tomorrow! eating jelly babies, quavers, marsh mallows etc.
I had an appointment with my surgeon last week who initially said it can't be reversed but then changed his mind. He said it will depend on what further treatment I need on my liver - I still have tiny cells which they will monitor I hope will be treated with ablation. but at the end of the day my surgeon said the decision for reversal is kind of left with oncology. I believe you cannot have a reversal if you are going through other treatment so I guess I have to be patient.
but I am also thinking about having a reversal done privately. The NHS is the best in the world but I dont want to be on a waiting list forever and a day.
any thoughts on your experience would be appreciated.
Marie x
