Following diagnosis in 2013 I was on watch and wait for two years before needing surgery in April 2015. In the few weeks leading to surgery, I confided in a friend of my nerves. She looked up cytoreductive surgery on the internet and immediately came across an article about someone who had undergone the surgery along with HIPEC. A woman, who like me was in her early-mid 30’s. Playing detective, my friend tracked her down on Facebook and made contact on my behalf. She kindly answered immediately, and we ended up speaking via Facebook messenger and then over the phone. She answered all my questions, reassured me that I could deal with the immediate aftermath of the surgery and that my life would continue without looking entirely dissimilar to how it currently was. She also told me about Pseudomyxoma Survivor. I think I’d had a brief look on the website but with less than a couple of weeks to move to a new house and make my way to Basingstoke for surgery, I didn’t give it much time.
Following surgery and several weeks in hospital, I decided I needed to investigate the Pseudomyxoma Survivor website a bit more. I had excellent support from family and friends but being such a rare cancer, no one could fully understand how I felt nor answer any questions as to why I was feeling a certain way. From the website, I discovered the Facebook group, applied to become a member and soon realised I could get the understanding and answers I was looking for.
Initially I was visiting the group regularly, at least once a day, getting information and inspiration from all those who were asking and answering questions, posting thoughts, quotes and pictures. I got plenty of reassurance and I am sure it really helped me recover mentally from an experience that only those who have gone through it can fully understand. In time I started to answer others’ questions, respond to others posts and became fully engaged in the group.
About three years ago, after a couple of years in the group, I was approached by Amanda, then one of the trustees, to become a volunteer moderator. It didn’t really require me doing much more than I already was, answering questions, and making sure posts didn’t go unanswered as well as making sure the trustees were aware of any important upcoming dates for members. It was something I was more than happy to do, 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. It was my way of giving back and making sure others feel supported through their journey with PMP. I am sure I get as much from it as I give, if not more. In all honesty, I feel I do very little as the trustees and other group volunteers are so on the ball and much more knowledgeable than I am. I feel a bit of a fraud as a volunteer but love the camaraderie and insight I get being a tiny part of such an amazing team.
Other volunteering stories
We are now looking for able and motivated individuals to join our Board of Trustees, to help lead and guide our important work. Mainly, we are looking for people who are excited by the work Pseudomyxoma Survivor does, share our values and will play an active part in the work of our Board. Is this you?
This is a great opportunity to gain experience in a very small charity and develop your existing skills and learn new ones.
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!