News
Keep in touch with what is going on at Pseudomyxoma Survivor.
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?
Donate tissue sample – US patients
Calling US patients: Do you have an upcoming surgery or an ascites drain scheduled in the United States?
If so, please consider donating your excess tissue for an important research project. The ACPMP Research Foundation has partnered with Pattern.org to enable patients to donate their excess tissue or fluid to the Cancer Cell Line Project at the Broad Institute of MIT and Harvard.
Dr Paul Sugarbaker
Currently, Dr Sugarbaker is the Director for the Program in Peritoneal Surface Oncology. His interests are in gastrointestinal cancer, gynecologic malignancy and mesothelioma.
CRS and HIPEC sounds complicated, what is it?
Cytoreductive surgery (CRS) for pseudomyxoma peritonei (PMP) is a complex operation with the aim of removing all visible tumours, affected tissue and entire organs. The NICE guidelines recommends the Sugarbaker technique and defines the operation as radical.
What things do you wish you were told when you were diagnosed?
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I just re-found an article and while it isn’t specifically about pseudomyxoma peritonei (PMP) or appendix cancer, it is very relevant to everyone diagnosed with any cancer and I remember reading it and that it helped me with where my diagnosis (and two recurrences) put me and those around me.
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— is honouring highly reviewed nonprofits with their 2019 Top-Rated Awards.
Tumour markers CEA, CA125 and CA19-9, what are they and what do they mean?
A tumour marker is a substance of the blood that appears at a higher level than expected in your blood, in your urine or in a sample of your tissue. They may be produced by the presence of cancerous cells or by perfectly healthy cells.
How do you pronounce pseudomyxoma peritonei?
You’ve got the diagnosis and you’ve stared at the words but just how do you pronounce pseudomyxoma peritonei?
Is Pseudomyxoma Peritonei Rare?
Pseudomyxoma peritonei (PMP) is a rare and uncommon cancer.
Hundreds of patients join walk to support GP with rare cancer
Hundreds of patients in Northumberland have come together to show support for their local GP after she was diagnosed with a rare form of cancer.
London Landmarks Half Marathon 2020
The ballot for the London Landmarks Half Marathon is now open! #TeamPseudomyxomaSurvivor would love to welcome you into the team if your application is successful.
How a town is repaying the GP who treated them for years after her diagnosis with appendix cancer
Georgina Morgan was diagnosed with stage four appendix cancer in August 2018. The town where she lives showed their support by taking part in a walk through Rothbury.
Intimate Audrey
We were invited by our patron, Sean Hepburn Ferrer, to the VIP opening reception of the Intimate Audrey exhibition. Intimate Audrey is an exhibition on the life of Audrey Hepburn created by her son, Sean, to celebrate her 90th birthday anniversary in her birth town of...
I thought I had a hernia
John went into hospital for a hernia operation. Afterwards, he was told that it wasn’t a hernia but a ‘small, bloody mass’. The pathology came back as pseudomyxoma peritonei (PMP).
Shortage of Radiologists
As patients, we are all very much aware of the pressure on radiology departments and the ensuing delays. The Royal College of Radiologists (RCR) has today published the Clinical Radiology UK Workforce Report 2018, which highlights the pressures affecting both diagnostic and interventional radiology across the UK.
Easter Shop
We were so happy to receive this box of knitted items from Pseudomyxoma Survivor friend, Margaret. Knitted by Margaret and her friend Marion, they have donated them to Pseudomyxoma Survivor so that we can offer them to you.
An Open Letter to Government
Pseudomyxoma Survivor is one of over 125 patient organisations that have signed Rare Disease UK’s open letter calling on the Government to review and refresh the UK Strategy for Rare Diseases. The letter has now sent to Baroness Nicola Blackwood, the Minister in charge of rare diseases, and Rare Disease UK have requested a meeting with her to discuss this further.
If the mountain seems too big today
A poem was shared in our support group today which reminds us that some days we can’t put a brave face on it and that’s okay.
How can you help us?
We’ve a number of things that we’d like help with at the moment and we’ll be putting together a fuller description of them all shortly. If you think you can help, please get in touch. If you think there’s something you could do to support those affected by PMP and appendix cancers that we’re not already doing, we’d love to hear from you!
Can you help us raise awareness of pseudomyxoma peritonei and appendix cancers?
This is a great opportunity to gain experience in a very small charity and develop your existing skills and learn new ones.
This voluntary role is what you make it, offering great flexibility to fit around your time and you will mostly manage your own workload from home. It is a requirement that you are available for at least some time during standard UK office hours.
We’re looking for trustees!
We are now looking for able and motivated individuals to join our Board of Trustees, to help lead and guide our important work. Mainly, we are looking for people who are excited by the work Pseudomyxoma Survivor does, share our values and will play an active part in the work of our Board. Is this you?
Trustees Week, 16th November
As trustees, we’re volunteers who ultimately take on the legal, strategic and oversight responsibility for the work carried out by Pseudomyxoma Survivor. We take the leadership role in the charity, donating our time to ensure the organisation is sustainable, well managed and delivers impact for the beneficiaries and our PMP community.
Securing a cancer workforce for the best outcomes
One of the connections we have made this year is with National Voices, the coalition of charities that stands for people being in control of their health and care. National Voice has drawn our attention to a new report published by Cancer Research UK, ‘Securing a cancer workforce for the best outcomes’.
Sad News
All of us here at Pseudomyxoma Survivor are really saddened by the news that Mr Fulford from the Christie has passed away. On behalf of all of us and our support group members, we pass our condolences to the team on the loss of a man that changed the lives of so many. To quote Mr Aziz, “The world is a poorer place without you, Paul”.
Trustees Week 14th November
One of the recommendations of the Charity Commission, the body that regulates charities in the UK, is that charities work with other charities. This is extremely important to the trustees of Pseudomyxoma Survivor and key to a lot of the things we do.
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.