In May 2018 I was diagnosed with Pseudomyxoma Peritonei, which is a very rare form of cancer affecting around two people per million each year!Whilst I was waiting for treatments / information from my health care team, I took great comfort In finding support and information from Pseudomyxoma Survivor. I was able to learn more about the disease and understand what was going on in my body. This helped me mentally prepare for what I was about to face.I also found friends via the support network-who I was able to ask advice, seek answers and also act as a friend for them and others.During my treatment and aftercare, the team were extremely supportive and remained in contact about how my treatment went. The best thing for me was when I received an amazing box of balloons from the charity. This made my day and I was so grateful and amazed to have received them.I continue to support the charity and use the networks I’ve made to seek support both for myself and also my new friends which have been made from the charity.
Without Pseudomyxoma Survivor I could not cope with this disease . It is like having a best friend who is always there for you .
Pseudomyxoma Survivor 10/30/2018
Thank you, Susan, glad we could help
I was diagnosed with Pseudomyxoma in October 2017. I had never heard of this type of cancer before and couldn't even pronounce it to begin with.
All I knew about it after getting my results was that it was a rare type, the doctor "wouldn't wish this on anyone" and that treatment would either be in Basingstoke or Manchester.
It was a time of worry and uncertainty as to what this diagnosis would mean... I did a lot of googling!
I was lucky enough to be put in touch with another PMP sufferer who is now a good friend. I was able to get an insight in to what was to come. After meeting she added me to the Pseudomyxoma Survivor group.
This group not only provided support and reassurance to myself but also to my family too. We were able to learn about other people's experiences and what was ahead of us.
My four week stay in hospital was difficult for me but the messages of support, kindness and delivery of balloons to the ward from the group really helped.
There is always someone there who understands after going through it to give help and advice at any point along the way. I have made many friends through this.
Pseudomyxoma survivor is a very special group.
Pseudomyxoma Survivor helped my family and I at a very difficult time. They provided both financial and emotional support and enabled us to be with my Mum when she needed us during her cancer treatment which took place away from our home city. We will always be grateful for this and I’m happy to say that Mum is recovering well.
They helped me understand the heartbreaking disease my friend was going through. And after my friend passed away this year they were amazing when I got in touch to raise money for them, offering support to me and my friends family. We need more charities like this.
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.
I had never heard of PMP when I was diagnosed after a CT scan, even though I had been a radiographer for 30 years. The first thing I did was Google at work, cancer research came up! I was scared and shocked. I had to get through the rest of the day!
As soon as I got home I googled again, and found this amazing site. I could read about what I had and what to expect. The most amazing thing has been the Facebook group. To be able to ask questions to people who had been through treatment was invaluable. To also be able to support others and encourage positivity has been great. I've met some great people, in person and online. The day Stacey and I were discharged from ward 10 at the Christie Hospital we asked someone to take our photo
When I was first diagnosed with pseudomyxoma peritonei (PMP), I wanted to keep it to myself. I thought that being involved with or meeting other patients would somehow take something away from being diagnosed with something so rare. How wrong could I be!
I have volunteered with the charity for a number of years now and it has given me a focus in my life during my recovery. At times it's challenging as no one really wants to do admin, do they? But it is really worth it to see the positive effect the charity has one people's lives.
I've regained my confidence in y own abilities and met so many lovely people who understand what I have been through. I hope I've made a difference in some of their lives as well. I've taken on challenges and learnt new skills and can honestly say it's been an amazing, fulfilling and life-changing experience.
Pseudomyxoma Survivor is a fantastic charity run by people who have been affected by Pseudomyxoma Peritonei. The charity has helped many patients and carers over the years by supporting them through their initial diagnosis, treatment and after care. The charity runs a buddy scheme whereby newly diagnosed patients can link up with someone who has previously been affected by the disease who can offer support and advice either by meeting face to face, over the phone or via e-mail, whichever suits the patient.
The charity also runs a closed Facebook page with over a thousand members who are able to ask questions, share experiences and offer support to others in the "Facebook family". Applications to join the group can be made via the Pseudomyxoma Survivor website.
This charity offer support for those diagnosed with a rare cancer of the appendix through an online group and a one-to-one buddy scheme. Everything the charity does is through the goodwill of all of its volunteers.
They raise awareness through attending conferences and meeting with other charities and organisations, advocating for rarer cancers at policy making level.
Pseudomyxoma Survivor also support and give funding to research to help find a cure for this awful disease. A great charity.
When my mother was diagnosed with Pseudomyxoma Peritonei it was sheer luck that a friend of mine had heard of this before. Her niece had not long been diagnosed and had the operation. We met with her niece and she told us all about these people in a charity which were so helpful.
So I found the charity through Facebook and then the wealth of knowledge on their website. It was such a relief to see so many people who had survived.
They have a public Facebook page, a private support group and a buddy system among other things. From those who initially started it to those who run it now, I couldn't be more thankful.
The help we receive is amazing and I am pleased to now be able to pay that back myself by helping others too.
Pseudomyxoma survivor have been an invaluable help to myself and my family. They have helped endlessly with support both emotional and financial when needed most.
The support I have had from this charity is second to none. To be diagnosed with a rare cancer at the age of 27 sent my mental health in to overdrive. It was the biggest sigh of relief to find the charity & be able to speak with other patients & survivors about their experiences and to be able to ask questions without judgement or fear of looking silly is fantastic. I don’t know how my journey would have progressed Without this amazing charity.
Pseudomyxoma Survivor 10/12/2018
We're very pleased to have been able to help.