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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.
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.read more
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.read more
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.read more
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.read more
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.read more
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.read more
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.read more
Mark’s story starts with a stomach bug that was part of a series of episodes leading up to his diagnosis.read more
Having been appointed as Rare Disease Day Ambassador 2014 following Dawn’s nomination, we are absolutely thrilled to announce that Sean Hepburn Ferrer – our wonderful patron and son of our iconic PMP angel Audrey Hepburn – has been invited by EURORDIS to continue his Rare Disease Day Ambassador role into 2015.read more
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.read more
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.read more
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.read more
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.read more
Following her operation, Mel had four months off work as she recovered and says that making loom bands helped take her mind off the trauma of what she had been through. Read her story in the Ipswich Star.read more
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.read more
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!read more
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.read more
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.read more
Jo was on holiday in Thailand when she noticed that it hurt when she laughed.read more
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.read more
Following on from his post about his initial diagnosis, John shares his treatment story with us.read more
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.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.
Third NAEDI research conferenceMillennium Gloucester, 4-18 Harrington Gardens, London SW7 4LH, United Kingdom
Charity BallHilcroft Hotel, 108 E Main St, Whitburn, Bathgate, West Lothian EH47 0JU, United Kingdom
Blogs and stories by fellow survivors
Feeling inspired?We hope our blog has inspired you and perhaps you have a story to share – let us know if it has. You can leave a comment on a story or you can contact us with yours.