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.
When Floss and Alan were celebrating their Golden Wedding Anniversary recently, they want to give something back for the support their daughter has received from the charity. Instead of gifts, they asked their friends and family to make a donation and have raised over £500 in aid of Pseudomyxoma Survivor!
Thank you, Floss and Alan and congratulations! The cake looks amazing xxxread more
Most of the talks were interesting and, despite being very specific to particular diseases, there were positive messages that could be applied across the board of rare diseases. What draws us together is the human aspect; the isolation, the struggle for recognition (especially with invisible diseases), the importance of support from loved ones and the belief that we can still be the best we can be despite a disease.read more
The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor. My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!read more
Calling all budding artists – our Christmas Card Competition 2017 is launched!read more
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.read more
Before I was diagnosed, I experienced increased abdominal size and piercing pain which was diagnosed initially with an inflamed appendix. It took about four months and another doctor for me to get the correct diagnosis at the end of January 2014.read more
You may have seen posts on our Facebook page from the Yorkshire Yaks and wondered about the association with Pseudomyxoma Survivor.
Adam is quite simply one of the most amazing people we know – you might have seen his story in the newspapers or on tv recently.read more
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.read more
Cancer52 is an alliance of 90 organisations, within the UK, working to address inequality and improve outcomes for patients with highly challenging disease, such as pseudomyxoma peritonei (PMP). 52 percent of UK cancer deaths have been determined to be from the less common cancers (although recent statistics show a likely increase to 54%).read more
Have we told you about Audrey the PMP Unicorn? As you know, pseudomyxoma peritonei (PMP) is a rare disease and unicorns are extremely rare. Audrey is travelling around the PMP community sharing pictures of her travels, raising awareness and some money in aid of Pseudomxyoma Survivor as she goes.read more
My 10-year-old son has recently been to pioneer week where he goes to his new secondary school for a week to experience life there. He was asked to write about someone who inspires them.read more
As patients, we want to be as best informed as possible. Here are some of the most commonly encountered medical prefixes and postfixes, from Rasmussen Collegeread more
With increasingly limited Government resources (and the impact within the UK of Brexit), we must all be aware that healthcare may not continue to be a national priority in each of our own countries, this is really worrying for rarer diseases like ours as we could be pushed further and further down the priority list.read more
Initially, I had flu-like symptoms with pain in all the joints in my body followed by bad abdominal pain that did not go away. I was admitted to Gosford Hospital on February 11th, 2014 as they couldn’t diagnose what was causing the severe discomfort I was having. After being in hospital for eight days, it was discovered that I had pseudomyxoma peritonei (PMP).read more
Pseudomyxoma Survivor is supporting Rare Disease UK’s Pledge for Patients in the run-up to the UK General Elections. Are you?read more
Join the nearly 2,000 people that voiced their opinions about the use of complementary & alternative therapies in the management of rare diseases by responding to this short #RareBarometer survey. By taking part, you will be contributing to the report for pseudomyxoma peritonei.read more
Dawn was someone who everyone thought they knew – cancer ambassador, selfie queen – but to us, the two people who really knew her, she was simply Mum.read more
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot.read more
My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.read more
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.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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