On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
A few weeks ago, I was privileged to be able to attend the James Bond 007 Ball organised in support of Pseudomyxoma Survivor. I’d like to say ‘thank you’ to the organisation committee for inviting me and for arranging the ball. The room looked fantastic — the theme even extended to bullet holes in the toilet doors!
When Nicki’s friend was diagnosed with pseudomyxoma peritonei (PMP), Nicki decided she would show her support by raising awareness and some funds for the charity at the same time. She came up with a plan that is visible and also supported another charity as well as Pseudomyxoma Survivor.
After an elderly relative was admitted to hospital with gallstones and, after researching her symptoms online, I was convinced I had the same problem. I pestered my GP to refer me for an ultrasound which eventually showed I had no gallstones, but “a fair amount” of fluid around my liver.
Hopefully, going to the GP with some of the symptoms for PMP could result in earlier tests and lead to an earlier diagnosis for patients.
I knew that I didn’t have textbook appendicitis but does anyone really have “textbook appendicitis”?
I cried as I was driving home from my doctor’s appointment. Then I picked myself up when I got home and googled “low grade mucinous appendiceal neoplasm” because I needed to know everything about this new enemy. That’s when I found the term pseudomyxoma peritonei.
You’ve liked our Facebook page, followed us on Twitter, added us to your circles on Google+, subscribed to the blog and read the website (you haven’t? … well, that’s ok [sort of] — but hey, now is a good time to do so, right?).
But just what is Pseudomyxoma Survivor and who are the faces behind the name?
My prognosis isn’t good so for me it’s all about making memories and living my life to the full whilst I still can.
So much of what you read online about the disease focuses only on the severity of the illness, and this can be terrifying for patients. I think it’s really important that people with a PMP diagnosis are given positive messages – because the fact is, you can survive and indeed thrive after pseudomyxoma. Raising awareness of this fact is just as important as raising awareness of the disease itself, I reckon.
I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, which led to an ultrasound and eventually a CT scan, I was told I had a nine centimetre tumour on my appendix which had burst and leaked cancerous mucin into my abdominal cavity.