We hope you’ve been keeping well in lockdown. This is a difficult time for everyone, especially for those of us living with or affected by pseudomyxoma peritonei and other cancers of the appendix. Our online community and Buddies system continue to provide forums of support and understanding, and we hope to see everyone there.
Two and a half years ago, neither Annie or Jim had heard of pseudomyxoma peritonei (PMP). In November 2017, Jim was diagnosed with a high-grade appendix tumour that was the first stage of the disease.
I was really positive about my recovery after the major operation for pseudomyxoma peritonei (PMP). I took things really slowly and took good care of myself.
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot and raising awareness of pseudomyxoma peritonei.
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.
Serendipity! I love that word, it’s my favourite word, so if we are ever on Mr and Mrs together, you know my answer. It means “the occurrence of events by chance in a happy or beneficial way”. A chance meeting, orchestrated by a very special lady in Norfolk, has brought our two charities together.
On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. My story is about what happened next, my surgery, coping with the stress and the positives that came out of it.
Four years ago, I had to give up my ticket to watch the London Olympics to go to a hospital appointment and be told I had PMP and had only ‘a few months’ if Basingstoke could not offer me CRS and HIPEC. Now I’m in Rio!
Many patients discover varying degrees of issues with food and drink during the weeks and months after their operation. Although appendix cancer and pseudomyxoma peritonei patients may have similar cytoreductive surgery (CRS), including the partial or total removal of...
We have been having a discussion within our support group about the fact that the internet will focus on the more ‘sensational’ rather than the more ‘mundane’ and so we asked for some of the support group members to share their stories just to show that there isn’t always complications and sometimes things just turn out well.
Looking back, I think we were trying to protect our children from the reality of the disease. Initially, when we discussed my diagnosis, we used terms like death, dying, chemo and cancer. We thought we spun this into a very positive approach, but our “method” may have given our children a confusing and unrealistic message about survival instead.