Not being a straightforward pseudomyxoma peritonei (PMP) patient, I started life out as a supposed irritable bowel syndrome sufferer, how wrong! Turns out I had bowel cancer.
After receiving chemo after an emergency operation in August 2016, a small liver lesion prompted a PET scan before the next surgery. This didn’t give the result they were expecting, the liver lesion didn’t show up but a peritoneal surface malignancy did. Luckily my local oncologist in Aberdeen knew of a wonderful team at Basingstoke that are specialists in this field. This brought about a lot of searching on the web to find out about peritoneal surface malignancies and more so Basingstoke. This search turned up the website “pseudomyxomasurvivor.org” which in turn led me to find their Facebook group.
After joining the group, I found out lots of information on exactly what the surgery entailed and hearing the phrase ‘Mother of All Surgeries‘ (MOAS) for the first time, I will admit to being a bit scared. This was quickly dispelled by comments and advice from other members of the group.
After my operation and due to my slightly different path to my operation, Amanda (the lead administrator and trustee at that time) asked if I would be interested in becoming a volunteer for the group and charity as I could perhaps give advice and support to others who started out as ‘basic’ bowel cancer. I was more than happy to become a volunteer as the help and support I received were amazing. To be able to chat with others and offer just a tiny virtual hug or an emoji smile can make all the difference. It did for me at a very scary time.
As well as volunteering with Pseudomyxoma Survivor as part of the community admin team, I also have my own Facebook page ‘My Basingstoke Adventure and Beyond’ for anyone looking for a less serious insight into what we go through and perhaps to make this disease a little less scary for the newly diagnosed.
Other volunteering stories
This is a great opportunity to gain experience in a very small charity and develop your existing skills and learn new ones.
This voluntary role is what you make it, offering great flexibility to fit around your time and you will mostly manage your own workload from home. It is a requirement that you are available for at least some time during standard UK office hours.
My first event was on a conference stand in Paris for two days, when I tried very hard to avoid saying “pseudomyxoma” as I did not know how to pronounce it!
I was more than happy to become a volunteer admin, remembering how important I found the reassurance of the woman I spoke to before my surgery and the help and support I received from the group after it.