In the News
Keep in touch with what is going on at Pseudomyxoma Survivor
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
A Joint message from the PMI and CPOC
Here at Pseudomyxoma Survivor, we are doing as much as we can to support us all in the current climate.
As patients ourselves, we were concerned that treatment and monitoring may be affected as our specialists are supporting COVID-19 patients.
A topic we don’t discuss enough
People often say things are life-changing; this is truly one of the most life-changing books I have ever read.
London Landmarks Half Marathon LLHM 2020 Update
We have a fantastic team of runners who have all been training hard for the London Landmarks Half Marathon in order to raise funds for Pseudomyxoma Survivor. Due to the current risks around Coronavirus, our runners have found an imaginative alternative.
EuroPMP International Workshop on pseudomyxoma peritonei
In December, Susan and Angela have been asked to present at the EuroPMP International Workshop on pseudomyxoma peritonei. It is a privilege to be asked to present to this network of experts from many fields, including surgeons, pathologists, oncologists, radiologists, molecular biologists, bioinformaticians and allied health care professionals of which Angela is a participant.
NHS Standard Contract for 2020/21
Pseudomyxoma Survivor welcomes the introduction of the Faster Diagnosis Standard which will ensure that all patients who are referred urgently for the investigation of suspected cancer by their GP or a screening programme find out, within 28 days, if they do or do not have a cancer diagnosis. This standard will be introduced in April 2020.
Share your story and leave us a review!
You have an opportunity to help us make even more of a difference in our community. GreatNonprofits —a review site like TripAdvisor— will be honouring highly reviewed nonprofits with their 2020 Top-Rated Awards.
Coping with your disease
We're looking at different aspects of our service and where we should focus. As part of that, we are looking at a series of questions and we'd like your help. Our first question for you is Has being a member of our online support group or the PMP RareConnect group...
Rare Disease Day 2020
Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of
February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare
diseases and their impact on patients’ lives.
Fundraising and Donations update
Your fundraising and donations have enabled us to donate to both the Peritoneal Tumour Service at The Christie in Manchester and to the Peritoneal Malignancy Institute at the Basingstoke and North Hampshire Hospital for research trials this year. We are very excited that both trials fit with our charity remit – assisting those with pseudomyxoma peritonei (PMP). Thank you.
Mitomycin-C shortage – information for UK patients.
On October 24th 2019, the Medicines and Healthcare products Regulatory Agency (MHRA) distributed a CAS Alert for Mitomycin-C regarding its supply and distribution. CAS is the Central Alerting System which cascades warnings regarding medicines and medical devices shortages, concerns and issues across the health and social care system in the UK.
Announcing our Bereavement Support Group
Here at Pseudomyxoma Survivor, our focus is very much on surviving with pseudomyxoma peritonei (PMP) and appendix cancers. One group of our community who are surviving with PMP and appendix cancer are those that are surviving after the loss of a loved one to the...
ERNs: Lend your support to the UK’s continued involvement
The voice of rare disease patients in Europe, EURORDIS, is supporting the Genetic Alliance UK’s #ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit. How can you help?
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.