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.

Don’t give up hope!

On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.

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A huge thank you!

A few weeks ago, I was privileged to be able to attend the James Bond 007 Ball organised in support of Pseudomyxoma Survivor. I’d like to say ‘thank you’ to the organisation committee for inviting me and for arranging the ball. The room looked fantastic — the theme even extended to bullet holes in the toilet doors!

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Supporting a friend

When Nicki’s friend was diagnosed with pseudomyxoma peritonei (PMP), Nicki decided she would show her support by raising awareness and some funds for the charity at the same time. She came up with a plan that is visible and also supported another charity as well as Pseudomyxoma Survivor.

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I was convinced I had gallstones

After an elderly relative was admitted to hospital with gallstones and, after researching her symptoms online, I was convinced I had the same problem. I pestered my GP to refer me for an ultrasound which eventually showed I had no gallstones, but “a fair amount” of fluid around my liver.

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Just who are we?

You’ve liked our Facebook page, followed us on Twitter, added us to your circles on Google+, subscribed to the blog and read the website (you haven’t? … well, that’s ok [sort of] — but hey, now is a good time to do so, right?).

But just what is Pseudomyxoma Survivor and who are the faces behind the name?

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Why I made an animation about pseudomyxoma peritonei (PMP)

So much of what you read online about the disease focuses only on the severity of the illness, and this can be terrifying for patients. I think it’s really important that people with a PMP diagnosis are given positive messages – because the fact is, you can survive and indeed thrive after pseudomyxoma. Raising awareness of this fact is just as important as raising awareness of the disease itself, I reckon.

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My PMP journey and why I’m doing my bit to raise awareness

I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, which led to an ultrasound and eventually a CT scan, I was told I had a nine centimetre tumour on my appendix which had burst and leaked cancerous mucin into my abdominal cavity.

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A very special way to raise awareness

I’ve always loved that Billy Joel tune, ‘We Didn’t Start The Fire’¹. As a music producer myself, for a long time I’d been thinking how cool it would be to record my own, adapted version of the song.

At the same time, in the two years since my MOAS² I’d been thinking about ways to raise awareness of PMP. I’d done a bit of fundraising myself here and there, but I really wanted to do something bigger. I wanted to do something collaborative to allow other survivors and supporters to get involved in a fun and positive way.

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A very special day

I was going through the content from the old website to make sure that I had brought it all across to this one and I stumbled across this post…

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For Carol

Last year, I pledged to do 30 Days of Biking. It’s a global challenge to ride your bike every day in April, any distance, any destination. For every 30 people to pledge, they donate a bicycle to a child in need.

I never got to fulfil my pledge.

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Jenny’s Story

A Bristol woman has made a full recovery after having nine of her organs removed. Jenny Ramage was told she would have died if she hadn’t undergone what doctors call the ‘mother of all surgeries’.

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100 days sober

I decided to help raise money for Pseudomyxoma Survivor when I found out my friend Kirsty was diagnosed with pseudomyxoma peritonei (PMP). I was in shock that she had developed cancer. You never think it will happen to someone you know, especially when they are the same age as you.

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Emily shared her PMP story with the BBC

A Hampshire woman who contracted a rare form of cancer has undergone surgery which involved the removal of a number of her organs, before she was blasted with chemotherapy. Emily Ervine had a rare form of cancer – the same condition that killed, Hollywood star, Audrey Hepburn.

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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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