When I was first diagnosed in 1999, no one at QMC Nottingham (where I worked, on the very ward on which I had my operation) had ever seen this before.
The pathologist brought in especially gave it a name – pseudomyxoma peritonei (PMP). There was no information, no glossy pamphlets, no specialist nurses, no web site, NOTHING. I felt very alone and frightened but got through my operation in Basingstoke thanks to Brendon Moran and his wonderful team.
I had just lost my husband to CJD in 1998, so had to “go it alone ” when I had my operation. I made my will, made arrangements for my funeral, even bought a dozen pairs of glam PJ’s as I had no-one to do my laundry. I never wore them, I lived in hospital gowns and I was home in less than two weeks. Things are so much better now, PMP is not a life sentence. Never give up hope.
~ Pauline
In case you missed it
I will support Pseudomyxoma Survivor in any way I can
“Because of my uncertain prognosis, I am keen to make lots of memories with my children, but now have limited income due to my inability to work as many hours as I used to.”
My overnight hospital stay eventually turned out to be 17 nights!
I was informed that I had pseudomyxoma perintonei (the nurse had to write it down for me) and they were referring me to The Christie specialist cancer hospital in Manchester.
Only 3 or 4 people per year are diagnosed with pseudomyxoma peritonei
Late in 2020, I went to A&E with stomach pains. I had a CT scan which showed a mass in my pelvic cavity the size of a grapefruit.