News

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.

I was diagnosed with an inflamed appendix

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

The Yorkshire Yaks set off!

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

When you’re faced with life and death, you choose life

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

Cancer 52 Members Meeting, July 2017

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

Audrey the PMP Unicorn

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

Feeling proud

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

Eurordis Membership Meeting 2017

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

I had flu-like symptoms and was diagnosed with PMP

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

Pledge for Patients

Pseudomyxoma Survivor is supporting Rare Disease UK’s Pledge for Patients in the run-up to the UK General Elections. Are you?

read more

Complementary and Alternative Therapies Poll

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

Remembering Mum

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

Lisa takes part in a photoshoot

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

I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!

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 2017, Research, Audrey Hepburn, Sean and us

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

I had shortness of breath and my sides ached

I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.

read more

Remembering Audrey

Sadly, Audrey Hepburn passed away this day, January 20th in 1993 after being diagnosed with pseudomxyoma peritonei (PMP). All of us at Pseudomyxoma Survivor feel honoured to have Audrey’s, Sean, as our patron and are very grateful for his on-going guidance and support.

read more

I used to lie in bed with this constant nagging pain where my appendix was

When I was 14, I used to lie in bed with this constant nagging pain where my appendix was. Every night, I was convinced that this would be the night it would explode, but it never did. Roll on 25 years and innumerable investigations and potions for IBS, haemorrhoids etc, etc. Nothing ever changed this pain. So I ignored it and got on with life, which largely revolved around being a highly stressed staff nurse and lots of body-damaging fitness (ultra-marathons etc).

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.

Your Basket

Want to help us a little?

If you would like to help us to continue to help others, we'd really appreciate a donation.

Events

Subscribe

Get the latest news from Pseudomyxoma Survivor delivered straight to your inbox. We post it, it’s in your inbox – subscribe today.

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.

we'd love to hear your news

Due to volunteer holidays, we will not be shipping from the store before September 8th.