News
Keep in touch with what is going on at Pseudomyxoma Survivor
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.
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.
I had shortness of breath and my sides ached
I had an ultrasound which showed a large tumour which was confirmed by MRI. I had surgery at my local hospital to remove a tumour the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
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.
10th International Congress on Peritoneal Surface Malignancies
To attend a conference, where there were 600+ people who not only are aware of my disease but have dedicated their lives to researching and performing operations, through HIPEC, all to help in advancing the search for a cure, was a great honour.
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.
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.
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.
I was admitted to hospital with abdominal pain and operated on the next day
On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. My story is about what happened next, my surgery, coping with the stress and the positives that came out of it.
Bellybuttonless
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.
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!
Susan’s Cancer Voices Book Reviews
As part of my commitment to raising awareness of PMP, I am also a Macmillan Cancer Voice. Cancer Voices are people from across the UK who share their experiences to help shape cancer services and improve cancer care. I’ve been to a few meetings in the past and more recently I have been reviewing books for them.
Sad News
We’re are very sad to share with you the news of the passing of Dawn Green, the founder of Pseudomyxoma Survivor. Dawn was first diagnosed with Pseudomyxoma Peritonei when aged just 30 years old and given three months to live. Never one to give in and take something...
Susie attends Parliamentary Reception for Cancer52
On 20th April, Susie went to Westminster and attended a parliamentary reception organised by Cancer52, a coalition of more than 80 charities representing rare and less common cancers.
Being sick
The last year and a half has been a profound and unmooring experience, and one I turn over in my mind with gratitude, disbelief, and amazement.
Too young for cancer
It’s tough being only 20 years old and an appendix cancer patient at that. Mainly because no one expects or even wants to believe you could even end up developing cancer, and the worst culprits are medical professionals. True, the odds are so low it’s a waste of time to even bother, but that ‘waste of time’ could have cost me my life!
Don’t give up hope!
On February 2nd, 2011, my appendix burst and I had an operation in Burton-on-Trent. I was 36. On March 7th, I received a letter from the hospital saying I’d missed a follow-up appointment for a suspected case of PMP. I hadn’t received the original letter and just what was PMP? I looked it up on the internet.
Supporting a friend
When Nicki’s friend was diagnosed with pseudomyxoma peritonei (PMP), Nicki decided she would show her support by raising awareness and some funds for the charity at the same time. She came up with a plan that is visible and also supported another charity as well as Pseudomyxoma Survivor.
I was convinced I had gallstones but it wasn’t gallstones
After an elderly relative was admitted to hospital with gallstones and, after researching her symptoms online, I was convinced I had the same problem. I pestered my GP to refer me for an ultrasound which eventually showed I had no gallstones, but “a fair amount” of fluid around my liver.
I knew that I didn’t have textbook appendicitis but does anyone really have “textbook appendicitis”?
I cried as I was driving home from my doctor’s appointment. Then I picked myself up when I got home and googled “low grade mucinous appendiceal neoplasm” because I needed to know everything about this new enemy. That’s when I found the term pseudomyxoma peritonei.
Just who are we?
You’ve liked our Facebook page, followed us on Twitter, added us to your circles on Google+, subscribed to the blog and read the website (you haven’t? … well, that’s ok [sort of] — but hey, now is a good time to do so, right?).
But just what is Pseudomyxoma Survivor and who are the faces behind the name?
My PMP journey and why I’m doing my bit to raise awareness
I was diagnosed with PMP aged 32, after many months of stomach pains, bloating, constipation and irregular periods. After numerous trips to my GP, which led to an ultrasound and eventually a CT scan, I was told I had a nine centimetre tumour on my appendix which had burst and leaked cancerous mucin into my abdominal cavity.
Prof Wim P Ceelen
Prof Wim Ceelen is a senior GI surgeon at Ghent University Hospital, also an Associate Professor in surgical oncology at Ghent University.
Putting on your happy face every day to those you love, trying not to worry them, has been exhausting
It is not in my nature to reveal all of the everyday trials and tribulations to every person I meet. I do believe that this has been the hardest thing I have ever done in my life, and to try and remain calm, cool and collected in the face of such an obstacle, has been exhausting, to say the least.
Dr Armando Sardi
Dr. Sardi is one of Maryland’s leading surgical oncologists who use Hyperthermic Intraperitoneal Chemotherapy (HIPEC) to treat late stage, complex cancers of the abdominal region.
Laura Lambert MD
Laura Lambert, MD is a surgical oncologist who specializes in treating peritoneal surface malignancies including pseudomyxoma peritonei.
Professor Paul Moroz
Prof. Moroz advises Pseudomyxoma Survivor, as a specialist in pseudomyxoma peritonei and HIPEC treatment, based in Australia.
Angus man helping to raise awareness of PMP cancer
An Angus man who suffered from the cancer that took Audrey Hepburn’s life is raising awareness of the disease.
I didn’t have endometriosis, I had PMP
My story began a few months after I got married. My first symptom was the sudden onset of intense pain while I was at work one day. After a few hours, the pain subsided but I decided to make an appointment with my family doctor a few days later.
I was told it looked like ovarian cancer… but it wasn’t
After my diagnosis with metastatic, well-differentiated mucinous adenocarcinoma of the appendix, my doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient.
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.
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.