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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 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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Becky’s Story

I wasn’t diagnosed until I had emergency surgery on August 8, 2013. I became ill on the August 6th, luckily my gynaecologist was on call and sent me to a gynae-cancer specialist who has actually seen appendiceal cancer three times before that, so he knew what to look for and do. I had a six-hour operation and four rounds of chemotherapy.
It is not in my nature to reveal all of the everyday trials and tribulations to every person I meet. I do believe that this has been the hardest thing I have ever done in my life, and to try and remain calm, cool and collected in the face of such an obstacle, has been exhausting, to say the least.

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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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One brave step at a time

Davina Knight stays positive in the face of one-in-a-million cancer diagnosis and she shared her story with The Morning Bulletin.

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Emily’s Story

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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Caylee’s Story

My story began a few months after I got married. My first symptom was the sudden onset of intense pain while I was at work one day. After a few hours, the pain subsided but I decided to make an appointment with my family doctor a few days later.

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Rachel’s Story

My doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient. One of my doctors guessed that I might have had six months without treatment. I’m happy that I was a candidate for surgery and HIPEC. Without it, I’d probably be dead right now.

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Raising the profile of rare cancers

Pseudomyxoma Survivor was represented by myself and Kirsten at Cancer52‘s event on 3rd March 2015, the aim of which was to raise the profile of the rare and less common cancers at a key time in cancer strategy development.

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Starting a food diary

Many patients discover varying degrees of issues with food and drink during the weeks and months after their operation. Although appendix cancer and pseudomyxoma peritonei patients may have similar cytoreductive surgery (CRS), including the partial or total removal of... read more

Rare Disease Day 2015

Appendix Cancer and PMP Patient Organization Statement

The Rare Disease Day 2015 theme is: Living with a Rare Disease – Day-by-Day, Hand-in-Hand.

As patients and caregivers who have been impacted by peritoneal cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal Metastases) our organizations have chosen to join together to share a simple message about these diseases.

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Receiving a diagnosis

My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the gynae-urinary clinic at my local University hospital with suspected bladder prolapse.

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RareConnect

Pseudomyxoma Survivor is proud to introduce a new online community to our members and friends. In partnership with EURORDIS and NORD, two of the world’s most established rare disease patient organisations, we’ve created a place where you can connect with others from around the world who know what you’re going through.

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Stacey’s Story

My name is Stacey, I’m 31 years old and a mother of five from the Gold Coast in Australia. I can literally say my baby and obstetrician saved my life! I had caesarean section on July 12th. This took 35 min and I was delivered of a beautiful, healthy, big baby... read more

Fay’s Story

Fay had her operation at the Christie Hospital in Manchester when she was just 28. She has been diagnosed with PMP. She shares her story.

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Susan, Cancer 52 and the House of Lords

I don’t know what has come over me recently but I am just starting to raise my head above the parapet. Which, considering I was first diagnosed in 2003, does make you wonder what I’ve been doing in between my 6 operations (MOAS in 2009), 3 rounds of chemo, radiotherapy, rounds of IVF and — oh, yes — that ‘miracle baby’ who is now 6 years old and in full teenage strop mode.

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World Cancer Day

February 4th marks World Cancer Day, the one day in the year when the world comes together to raise awareness of cancer and also to encourage its prevention, detection and treatment. This, alongside the announcement today from Cancer Research UK that cancer that one... read more

Cancer 52 meeting

Did you know that the percentage of patients diagnosed with a rarer or less common cancer in the UK is now 53%? No, I didn’t either until I went to the latest Cancer 52 meeting at the House of Lords.

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Georgina’s Story

I feel great. I was worried about catching colds and things without my spleen but I’m as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I’ve been through, it felt like nothing.

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Mark’s Story

Mark’s story starts with a stomach bug that was part of a series of episodes leading up to his diagnosis.

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Heat It to Beat It 2014

I am thrilled to report that I have been invited to take part in this year’s Heat It to Beat It walk in Baltimore! Pseudomyxoma Survivor has also kindly been offered an awareness table at the event and I have also been invited to give a small presentation.

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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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