Hello Ladies, I joined the forum a couple of months ago and am now feeling brave enough to post - you seem a friendly lot so here does. During 2016 I joked about getting my money's worth from the NHS, going backwards and forwards. Unexplained weight loss, dizzy spells and eye infections. My weight loss was put down to my dormant colitis, MRI on head was negative and I was weighed but no one seemed to take any notice of it ongoing. Finally suite of tests ordered in January resulted in urgent call to visit GP 'it's ovarian cancer, very bad, so sorry ...'. Bottom fell out of our world, as we were left alone for a week. More tests, and the a suggestion that it may be PMP or Pseudomyxoma piritonei. My results were sent from Somerset to The Chritie for a second opinion. Having gone to Manchester for the expert opinion, we had the first glimmer of optimism . The plan was debulking, rest, 2nd op for removal of just about anything left, and hot chemo. 'Aiming for cure' and ' I can remove anything ' were just what we wanted to hear.
First thing I remember was being in CCU with the same consultant and my partner. 'I'm really sorry, it's very bad' were not what I was expecting. PMP is known to produce a very thick jelly, rather than the thinner ascites, and apparently it was a complete surprise that my ovaries were as large as grapefruit, appendix unusually large and deformed and omentum 'filled' with tumours, with the thick jelly preventing these being seen. My situation is apparently 'precarious '
I can't say it's been a roller coaster ride, as that would imply ups and downs. I'm now at home recovering from surgery, having had ovaries and appendix removed. Still awaiting all lab reports from biopsies taken during op, but the previously confident consultant no longer mentions further surgery.
This has all happened so quickly, but despite being told to stay positive, it's hard to find anything to be positive about. Also still learning the rules - on doctors rounds, I mentioned dying and next thing I know is there is a psychiatrist at my side! Think I'm supposed to wait to be told the expert opinion first, as after all, I still don't even have a diagnosis.
At 58, I'm not going without a fight, and had been glad to be referred to the Christie, but if one of the best in the country can't fix me, not optimistic. It's annoying that post op I've been told enough to worry us, but still no facts or plan ahead. We are trying to focus on day to day, to build myself up for whatever comes next. Having lost 2 stones during the last year, my birthday suit is about 3 sizes too big! My diet includes cream cakes, large chocolate bars and tons of ice cream. The waiting is horrible, but I'm only human and don't want to hear news if it's bad. Sorry this has been a long first post - just trying to put one foot in front of the other and appreciate every day, while getting our heads around all this. Thank you taking time to read this, and any replies would be appreciated