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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 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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Welcoming Salena….

We are delighted to welcome Salena Begley onto the Board of Pseudomyxoma Survivor. Salena’s “day job” involves working for a large successful charity and she brings with her a wealth of experience in both fundraising and allocating grants.

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Serendipity…

Serendipity! I love that word, it’s my favourite word, so if we are ever on Mr and Mrs together, you know my answer. It means “the occurrence of events by chance in a happy or beneficial way”. A chance meeting, orchestrated by a very special lady in Norfolk, has brought our two charities together.

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Christmas Card Competition

Calling all budding artists!

We’ve been discussing charity Christmas cards in our support group which got us thinking here at Survivor Towers. Better late than never, we announce our 2016 competition to design the artwork for our cards.

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Bellybuttonless

I was diagnosed with PMP when I was 37; my son Aiden was 7 at the time. One of the hardest things I had to do was tell him about my diagnosis and tried to field many of the questions that he had. He’s an only child, so he had a lot of worries and anxieties – but we agreed early on to be truthful and try to face whatever came together. We tried looking for kids books that spoke a bit about the experience, ones we hope also had a hopeful outlook. While we found some great ones about dealing with breast cancer we couldn’t find any that dealt with the experience we were going through. Aiden suggested we make one together, so we did; we created ‘Bellybuttonless’. I was undergoing post-op chemo and couldn’t be very physically active yet, so it was the perfect activity to share together. We wrote it together and I illustrated it, which gave us lots of time to plan, discuss and heal together. Afterwards, we have offered it up to the world — we hope that it can help other families navigate this incredibly difficult moment together. The book is published and available in different places, but our hope has always been to make it as widely available as possible. The links below will take you to the download of the book in the web shop. Please feel free to download it and use, to share it with a friend that could use it. Any donation to this charity that so graciously seeks to bring awareness to PMP would be much appreciated. –... read more

My Olympic Victory

Four years ago, I had to give up my ticket to watch the London Olympics to go to a hospital appointment and be told I had PMP and had only ‘a few months’ if Basingstoke could not offer me CRS and HIPEC. Now I’m in Rio!

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Zoe’s raising awareness

Steve was diagnosed with pseudomyxoma peritonei after complaining of stomach pains. Now his wife, Zoe, is organising a charity auction at The Royal Hotel, Mundesley in Norfolk.

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PMP Community Webinar

If you were unable to join us for the first PMP Community webinar with our friends at RareConnect, the video is now available to watch. You can also download the presentation slides.

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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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