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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.

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.

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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).

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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).

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Salena is honoured in the New Year List

it really is an honour to be included in the New Year’s Honours List having been awarded an MBE and as such Amanda, Angela, Lyn and Susan would like you to join us in congratulating Salena in having been awarded and MBE for her services to children’s welfare.

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Merry Christmas!

It’s been a very long year for the team at Pseudomyxoma Survivor Towers. We’ve seen lots of new members join the support groups and we’ve lost some very special members too. The same applies to our team, we’ve extended the board of trustees (watch out for our newsletter to introduce you to Salena, our newest trustee), experienced the sad loss of our founder and gained some valued volunteers as well. We’ve had ill health to battle and personal issues to deal with along with the usual anxiety experienced with blood tests and scans.

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My husband was told to go home and take acetaminophen

In April 2016, my husband, Donald, was suffering from bad night sweats and severe belly pain along with a fever. He went to the doctor in April 2016 and was told to take some acetaminophen (paracetamol) and go home. Less than two weeks later, it was so bad that Donald went to the Emergency Room.

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Take part in Powdered & Waisted’s Draw

Debi from “Powdered and Waisted” has made this very special corset for a special reason and it could be yours! It’s difficult for us to try and explain how much work has gone into a piece like this. It’s all hand made and the process to make the ‘dragon scales’ is very detailed, it’s been an education for us to be a part of this corset being crafted.

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I stayed in hospital for just two weeks

I had full cytoreductive surgery with HIPEC given. I stayed in hospital for just two weeks. I have recovered slowly although well. My main problem I have been left with is far from normal bowel movements. I now only have my annual CT scan.

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How was the Peritoneal Tumour Service Patient day at the Christie hospital?

Well a bit later than planned, damned house move, I can update you all on the Peritoneal Tumour Service Patient day at the Christie hospital on September 21st, 2016. The event was really well attended, I’m constantly amazed that this community is much larger than I have ever realised and yet again I was able to meet some amazing people.

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Christmas Card Competition 2016 Winners

We are delighted to announce the results of our Christmas Card Competition 2016. Thank you for all entries and interest. Our winners are…
Renee Bearden Williams in the adult category and Emiliana Lawrence in the junior category.

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Liam Clarke – A Matter of Life and Death

Liam Clarke is a much-missed member of our PMP family and Kathy continues to support us even as she deals with her own loss. Susan and I had the privilege of meeting them both in Belfast last year and were both impressed then by the courage and grace with which he approached his illness.

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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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