Keep in touch with what is going on at Pseudomyxoma Survivor.

Keep in touch with what is going on by reading our Pseudomyxoma Survivor blog, including stories from survivors of PMP and appendix cancer. You can subscribe by email too.

My husband was told to go home and take acetaminophen

In April 2016, my husband, Donald, was suffering from bad night sweats and severe belly pain along with a fever. He went to the doctor in April 2016 and was told to take some acetaminophen (paracetamol) and go home. Less than two weeks later, it was so bad that Donald went to the Emergency Room.

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Take part in Powdered & Waisted’s Draw

Debi from “Powdered and Waisted” has made this very special corset for a special reason and it could be yours! It’s difficult for us to try and explain how much work has gone into a piece like this. It’s all hand made and the process to make the ‘dragon scales’ is very detailed, it’s been an education for us to be a part of this corset being crafted.

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I stayed in hospital for just two weeks

I had full cytoreductive surgery with HIPEC given. I stayed in hospital for just two weeks. I have recovered slowly although well. My main problem I have been left with is far from normal bowel movements. I now only have my annual CT scan.

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How was the Peritoneal Tumour Service Patient day at the Christie hospital?

Well a bit later than planned, damned house move, I can update you all on the Peritoneal Tumour Service Patient day at the Christie hospital on September 21st, 2016. The event was really well attended, I’m constantly amazed that this community is much larger than I have ever realised and yet again I was able to meet some amazing people.

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Christmas Card Competition 2016 Winners

We are delighted to announce the results of our Christmas Card Competition 2016. Thank you for all entries and interest. Our winners are…
Renee Bearden Williams in the adult category and Emiliana Lawrence in the junior category.

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Liam Clarke – A Matter of Life and Death

Liam Clarke is a much-missed member of our PMP family and Kathy continues to support us even as she deals with her own loss. Susan and I had the privilege of meeting them both in Belfast last year and were both impressed then by the courage and grace with which he approached his illness.

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Welcoming Salena….

We are delighted to welcome Salena Begley onto the Board of Pseudomyxoma Survivor. Salena’s “day job” involves working for a large successful charity and she brings with her a wealth of experience in both fundraising and allocating grants.

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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.

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Christmas Card Competition

Calling all budding artists!

We’ve been discussing charity Christmas cards in our support group which got us thinking here at Survivor Towers. Better late than never, we announce our 2016 competition to design the artwork for our cards.

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I was diagnosed with PMP when I was 37; my son Aiden was 7 at the time. One of the hardest things I had to do was tell him about my diagnosis and tried to field many of the questions that he had. He’s an only child, so he had a lot of worries and anxieties – but we agreed early on to be truthful and try to face whatever came together. We tried looking for kids books that spoke a bit about the experience, ones we hope also had a hopeful outlook. While we found some great ones about dealing with breast cancer we couldn’t find any that dealt with the experience we were going through. Aiden suggested we make one together, so we did; we created ‘Bellybuttonless’. I was undergoing post-op chemo and couldn’t be very physically active yet, so it was the perfect activity to share together. We wrote it together and I illustrated it, which gave us lots of time to plan, discuss and heal together. Afterwards, we have offered it up to the world — we hope that it can help other families navigate this incredibly difficult moment together. The book is published and available in different places, but our hope has always been to make it as widely available as possible. The links below will take you to the download of the book in the web shop. Please feel free to download it and use, to share it with a friend that could use it. Any donation to this charity that so graciously seeks to bring awareness to PMP would be much appreciated. –... read more

My Olympic Victory

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!

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Zoe’s raising awareness

Steve was diagnosed with pseudomyxoma peritonei after complaining of stomach pains. Now his wife, Zoe, is organising a charity auction at The Royal Hotel, Mundesley in Norfolk.

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PMP Community Webinar

If you were unable to join us for the first PMP Community webinar with our friends at RareConnect, the video is now available to watch. You can also download the presentation slides.

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PMP Awareness Month

“Let’s pick one. Pick a month, any month.” I said.

“Can we do that?” Dawn asked. “Can we just pick one?”

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Susan’s Cancer Voices Book Reviews

As part of my commitment to raising awareness of PMP, I am also a Macmillan Cancer Voice. Cancer Voices are people from across the UK who share their experiences to help shape cancer services and improve cancer care. I’ve been to a few meetings in the past and more recently I have been reviewing books for them.

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Sad News

We’re are very sad to share with you the news of the passing of Dawn Green, the founder of Pseudomyxoma Survivor. Dawn was first diagnosed with Pseudomyxoma Peritonei when aged just 30 years old and given three months to live. Never one to give in and take something lying down, Dawn researched online and found that there were treatment options available. She also noticed there was a lack of emotional support for anyone with the disease and with the support of family and friends, she established Pseudomyxoma Survivor to fill the gap. Despite her long decline in physical health and increasing struggles mentally, she did what she loved to do to the end – supporting other patients. Always a force of nature, keep following that rainbow, life will certainly be more boring without you, our one in a million xx... read more

Changes are afoot…

Following a decline in her health, we share the sad news that Dawn Green, the founder of Pseudomyxoma Survivor, has decided to step down from her role as trustee of the charity to focus on her own well-being and spend more time with family and friends. Dawn was first diagnosed with pseudomyxoma peritonei (PMP) in 2008, after about 15 months of misdiagnosis. She was given just three months to live. Dawn soon noticed there was a lack of emotional support for anyone with the disease, so she established Pseudomyxoma Survivor to fill the gap. Supported by family, friends and fellow PMP patients, Dawn started to raise awareness and to carry out the tasks necessary to register the charity. This involved organising fund-raising events, including cold, early morning starts for car boot sales, cake bakes and fancy dress evenings. Dawn also became interested in supporting the needs of cancer patients more generally and rare cancer patients more specifically. Shortly after Pseudomyxoma Survivor was registered as a charity, Angela came on board to support Dawn, followed more recently by Susan. Battling with surgery, chemo, Dawn has continued to support patients to the best of her ability. It has been increasingly apparent for some time that Dawn has been struggling to cope as her health has declined, and has had increasing difficulty undertaking the essential administration work associated with the charity. While other trustees have taken on more and more of the financial and administrative matters of the charity, Dawn has understandably found it difficult to let go and the stress and overhead of her remaining trustee duties have become impossible for... read more

Andrew’s Coast to Coast Walk

Andrew starts his mammoth walk today – starting today at St Bees on the west coast and finishing on Saturday next week at Robin Hood Bay on the east coast.

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Authors posting articles on our blog are patients and family caregivers who write their articles with the goal of sharing their experiences fellow patients and their families.

As survivors and carers, information here is from our perspective – we are not health care professionals. We are all individuals, everyone is different. We recommend that you take advice from your doctors for specific information.

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