My Nonprofit Reviews
Review for Pseudomyxoma Survivor, Warwick, , United Kingdom
I survived surgery (and an extremely close call in the week following) with only the unwavering support of my husband, a world class medical team plus a work colleague on the other end of the phone. As a strongly independent person, I managed well, although I do marvel at those who had family around.
After a few months, that tunnel vision focus of getting through surgery and recovery in order to get back to the ‘normal life’ I’d previously known had almost become reality. This was when things went abit awry. I’ve heard others say that you get so caught up in not dying that you forget how to live. The usual routine I’d fought so hard to return to just didn’t seem enough anymore. I didn’t fit into work, which had been my family and my comfort zone before the Pseudomyxoma Peritonei diagnosis. I felt isolated and frustrated as it was rare anyone understood anything of what I’d been through, partly because PMP was unheard of. To be honest, that’s still the case 2 years later. The treatment remains virtually on the fringes of medical science.
Whereas the surgery fixed my body, joining Pseudomyxoma Survivor saved my sanity. My first question was the biggie – ’What is my life expectancy having been through this?’ Even then, I was too scared to ask outright but my email was answered quickly by one of the Admins and just having someone who heard me and was able to allow me into the larger space of the Facebook Forum felt like a lifeline. Finding a home to voice the big things (and the little every day things) we go through and being able to share, safe in the knowledge you can rant, find humour in a dark situation or ask what you think might be a daft question - and that there’s someone who ‘gets it’ - is a huge part of finding your way post diagnosis and post treatment. When your family don’t want to talk and when the rest of the world feels you should have moved on, my fellow Survivors understand and are there 24/7.