News
Keep in touch with what is going on at Pseudomyxoma Survivor
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.
Intimate Audrey
We were invited by our patron, Sean Hepburn Ferrer, to the VIP opening reception of the Intimate Audrey exhibition
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!
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.
Trustees Week 13th November
Being a trustee can be very rewarding. As a trustee, you would have an opportunity to support and shape the work and strategic direction of Pseudomyxoma Survivor. You also have the chance to make a significant difference to a cause that matters to you. You...
Trustees Week 12th November
Here at Pseudomyxoma Survivor, we’re supporting Trustees Week, running from 12th-19th November, showcasing the work trustees do and highlighting opportunities for you to get involved and make a difference. We’ll be looking at different aspects of being a trustee and we’ve asked our trustees to share their thoughts on being a trustee.
Mr Omer Aziz
Omer Aziz is a UK-based consultant colorectal surgeon at The Christie and a member of the Pseudomyxoma Survivor medical advisory board.
Thank you for your support
We are very privileged to be able to make family grants and it is thanks to the hard work of our fundraisers and donors that we have been able to do so.
West Yorkshire & Harrogate Cancer Alliance
I am finally getting round to informing you all of my recent visit to West Yorkshire & Harrogate Cancer Alliance. We were invited by Cancer 52 and the meeting was a great and informative one.
Professor Norman Carr
Norman John Carr was previously Director of Research and Consultant Histopathologist at the Peritoneal Malignancy Institute, Basingstoke
I’ve gone from 0km to 10km in just over 6 months!
In 2015, I had cytoreductive surgery and HIPEC for pseudomxyoma peritonei. To thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x
Multi-disciplinary Diagnostic Centres
Through Cancer 52, Pseudomyxoma Survivor has received a special invitation to view a multi-disciplinary diagnostic centre (MDC) in action. MDCs are being trialled here in the UK and they are set up so that patients who present with non-specific symptoms can go to a one-stop shop and have all of the tests they require to help with a diagnosis.
PSOGI 2018
Pseudomyxoma Survivor representatives once again attended the bi-annual Peritoneal Surface Oncology Group International (PSOGI) conference, this time it was in Paris. The PSOGI aims to “improve the treatment and survival of peritoneal cancer patients by educating patients, by training physicians, by organizing meetings and by performing basic and clinical scientific research into peritoneal cancer and the different treatment modalities”.
An evidence-based approach
The BMJ defines evidence-based medicine as:
“the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients”
It’s a constantly evolving definition and at Pseudomyxoma Survivor, we always look for scientific evidence to back up suggested treatment plans for pseudomyxoma peritonei (PMP) and appendix cancer patients.
Gearing up for PSOGI 2018
The PERITONEAL SURFACE ONCOLOGY GROUP INTERNATIONAL conference, now in its 11th year, is almost upon us. I can't quite believe it's been two years since we attended the one in Washington DC! PSOGI is a non-profit organisation which aims to promote research, education,...
We need your stamps!
You can now donate your used stamps to raise much-needed funds for Pseudomyxoma Survivor. All kinds of stamps are welcome, on or off the paper.
Simply cut or carefully rip the postage stamp from the used envelope, being careful that you don’t damage the stamp, and once you have a collection pop them in an envelope
We thought it was nothing more than an ovarian cyst
My journey started in October 2013 (I was 53 years old), when I had an ultrasound to determine if I had gallstones or an issue with my gallbladder. The results showed a small cyst and mild fluid in my lower right abdomen area. It was decided that we would monitor the cyst and fluid and have an MRI in one year. We thought it was nothing more than an ovarian cyst. I never thought it would lead to a diagnosis of Mucinous Appendiceal Adenocarcinoma.
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.