In the News
Keep in touch with what is going on at Pseudomyxoma Survivor
I’m now on ‘watch and wait’ following a diagnosis of pseudomyxoma peritonei
For me, it all started with blood in my urine and an increase in the size of my stomach. In retrospect, I could feel the mucin moving when I walked. Now I’m on ‘watch and wait’.
The Biology of pseudomyxoma peritonei (PMP)
Pseudomyxoma Survivor is supporting exciting new research into the biology of pseudomyxoma peritonei.
Big Blue Thank You
The team here at Pseudomyxoma Survivor are excited to be supporting Big Blue Thank You!
Virtual Kiltwalk 2020
2020 is a really difficult year for UK charities and Pseudomyxoma Survivor is no exception. With lockdown and social distancing, the opportunities for fundraising have become severely limited. This is why we're so excited to share this news form The Kiltwalk with you....
Cancer biomarkers in the era of personalised medicine
As part of our commitment to research and to supporting cancer patients, we are inviting you to take part in the European Cancer Patient Coalition (ECPC) Survey on biomarker testing.
The top of the paper read “Carcinoma of the Appendix”
After my ruptured appendix was removed, the surgeon said the operation “took a little longer, it was messy in there.” For the follow-up, he called me in earlier to give me the bad news.
#helpushelpyou
The current climate has presented us with many issues and one of the greatest concerns is not many of us have visited a hospital for care during the COVID-19 pandemic.
Pseudomyxoma Survivor needs your help
We can’t emphasise it enough. We need your help.
Biweekly insight on PMP – 10th June 2020
We hope you’ve been keeping well these last couple weeks, and have been keeping safe and well as the coronavirus pandemic wears on.
Coronavirus Covid-19 information
Coronaviruses have been known for many centuries and in fact, the common cold is a coronavirus. The type of coronavirus in the news right now is the 2019 Novel Coronavirus, SARS-CoV-2.
I was diagnosed with pseudomyxoma peritonei, but it wasn’t
So little is known about this cancer and I’m sharing my story in the hope that I can find someone else with the same diagnosis.
Dead Man to Iron Man
As I came to terms with the news, I understood that it would be important for me to get as fit as I could to face such an invasive operation ominously dubbed the “The Mother of all Surgeries” or MOAS.
Estimating the incidence and prevalence of pseudomyxoma peritonei in Europe
Researchers have recently published some new figures on the number of people affected by pseudomyxoma peritonei (PMP) in Europe.
Shining a light on our volunteers – Anne
My first event was on a conference stand in Paris for two days, when I tried very hard to avoid saying “pseudomyxoma” as I did not know how to pronounce it!
Shining a light on our volunteers – Susie
I was more than happy to become a volunteer admin, remembering how important I found the reassurance of the woman I spoke to before my surgery and the help and support I received from the group after it.
Shining a light on our volunteers – Glenn
To be able to chat with others and offer just a tiny virtual hug or an emoji smile can make all the difference. It did for me at a very scary time.
Shining a Light on our Volunteers – Lucie
I’m achieving something here. I matter. I am making a difference. Feeling a useful part of the volunteer team perhaps pays back some of the support I’ve received.
Shining a light on our volunteers – Georgina
I’m keen to show my children that volunteering your time and energy is important and that despite my medical retirement I’m not giving up on my values.
Working, baking, growing and literacy in lockdown
With my husband and I both working from home while also entertaining our 7 and 5-year-olds, our days have definitely filled out.
Lockdown Life
Hope will always be a choice, and for me one made pragmatically I suppose — made for the purpose of survival of the soul as much as of the body. I can’t live in fear.
Lock down has been a mixture of emotions and realisations for me
When word was spreading that coronavirus may happen and schools might close, I was still very much living in a fog of grief.
Our next update
We hope you’ve been keeping safe and healthy during lockdown. Lockdown has gone on for weeks but at least the sunshine here in the UK has made everything feel better.
Biweekly Update on PMP 3
We hope you’ve been keeping safe and healthy during lockdown. Lockdown has gone on for weeks but at least the sunshine here in the UK has made everything feel better.
Does cannabis treat cancer?
Jamie Murphy, Consultant Surgeon in Peritoneal (HIPEC/PIPAC) & Pelvic Oncology ay Imperial College London discusses the evidence for the benefits of cannabis in treating cancers.
Biweekly Insight on PMP 2
We hope you’ve been keeping well in lockdown. This is a difficult time for everyone, especially for those of us living with or affected by pseudomyxoma peritonei and other cancers of the appendix. Our online community and Buddies system continue to provide forums of support and understanding, and we hope to see everyone there.
Update for Splenectomy patients in the UK
Yesterday it was announced by NHS England and NHS Digital that Splenectomy patients should be formally included on the Shielded Patient List, as they are considered extremely vulnerable.
Stacey’s Local Landmarks Challenge
I don’t like running. I never have! I find it quite dull, BUT, give me some motivation and a challenge and I’ll do it!
Annie and Jim’s Local Landmarks Half Marathon
Two and a half years ago, neither Annie or Jim had heard of pseudomyxoma peritonei (PMP). In November 2017, Jim was diagnosed with a high-grade appendix tumour that was the first stage of the disease.
Biweekly insight on PMP
Given the difficult situation we find ourselves in, we wanted to ensure that everyone in our community receives the extra support they need from us. That’s why we have decided to launch a new initiative to send you more regular updates on topics which you may find of interest.
Advice from the Royal Pharmaceutical Society
Community pharmacists and their teams are doing their best during these difficult times to make sure that everyone gets the medicines they need. We have today received advice from the Royal Pharmaceutical Society to help them to help you
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.