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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.

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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My treatment was largely uneventful…

We have been having a discussion within our support group about the fact that the internet will focus on the more ‘sensational’ rather than the more ‘mundane’ and so we asked for some of the support group members to share their stories just to show that there isn’t always complications and sometimes things just turn out well.

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Jennifer Raises Awareness

In May this year during a planned section of her baby boy, Euan, it was discovered that Jennifer had a mucinous cyst on her appendix. Both the cyst and the mucin were removed at the section. This experience inspired Jennifer to raise awareness of pseudomyxoma peritonei.

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It’s our Anniversary!!

Today marks the third anniversary of successfully registering Pseudomyxoma Survivor as an official charity registered with the Charity Commission in England and Wales. Thank you to each and every one of our supporters, for all that you do.

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The Lodger

Written during Bumper’s ongoing cancer battle, April 3rd, 2007 to August 2014 and onwards, this poem sums up how many of us feel about the lodger we’ve acquired.

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Trinity’s School Fundraising

Trinity kindly made and sold the ever popular loom bands at school and raised nearly £29 which is fantastic! Thank you for supporting Pseudomyxoma Survivor! read more

Maureen’s appendix cancer survivor story

Maureen is the married mother of grown children and enjoys spending time with her husband and family! She celebrates more than five years of showing no evidence of disease and shares her experiences, as well as suggestions for healthy living!

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Three suggestions for recuperating from appendix cancer surgery

As a husband and father of two young children, Warren placed high expectations on himself to “bounce back” quickly, but gradually learned that patience is needed, and helpful, while the body heals and stamina is gradually replenished. As an appendix cancer survivor, Warren shares suggestions for recuperation techniques that he learned from his own experience while recuperating from surgery.

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For Bobby

Bobby was a ‘comper’ – someone who likes to enter online voting competitions. She was also part of an online comper community which has come together to turn this sad passing into a force for good.

Some of her friends have set up a Facebook event to encourage their fellow compers to vote for Pseudomyxoma Survivor in the Direct Debit ‘Big Break for Charities’ competition with the winning charity being awarded £2000.

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Jo’s Story

Jo was on holiday in Thailand when she noticed that it hurt when she laughed.

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Marilyn’s Story

When my doctor told me what he had discovered during surgery for a suspected ovarian tumour, I could barely pronounce the words let alone understand what it might mean for me.

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No Makeup Selfie donations

We have been extremely blessed to have several of our supporters choose to donate to us in recognition of the no makeup selfie campaign and have so far had donations reach over £480 in just over 48 hours!!! Thank you to everyone who have chosen to pledge their... read more

Colmers School Fundraising

Many thanks to Kira and her fellow pupils at Colmers School and 6th Form for their recent fundraising activities and a wonderful £200 donation to us here at Pseudomyxoma... read more

John’s Story | Part 3

John has shared with us his initial diagnosis and his stay in hospital. Now he continues his story. I was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis. I had surgery in June 2013 and I was... read more

Remembering Colin

Salena’s brother Colin had pseudomyxoma peritonei (PMP). Sadly, he passed away ten years ago on 22nd November 2003 having been diagnosed on July 1st of that year. Searching the internet ten years on, Salena was so pleased to discover that there is a charity supporting people affected by PMP and to see the words “Pseudomyxoma” and “Survivor” together.

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Raising Awareness at Work

As you probably know, February 28th was Rare Disease Day (think we mentioned it enough times?). Today’s guest blogger, Mel, had the brilliant idea of using Rare Disease Day as an opportunity to raise some awareness of pseudomxyoma peritonei in her workplace. I... read more

 

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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Upcoming events

Events on March 26, 2015

Third NAEDI research conference

Millennium Gloucester, 4-18 Harrington Gardens, London SW7 4LH, United Kingdom
March 26, 2015, 12:00 am - March 28, 2015, 12:00 am
Events on April 25, 2015

Charity Ball

Hilcroft Hotel, 108 E Main St, Whitburn, Bathgate, West Lothian EH47 0JU, United Kingdom
April 25, 2015, 7:00 pm - April 26, 2015, 1:00 am

Blogs and stories by fellow survivors

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