News
Keep in touch with what is going on at Pseudomyxoma Survivor
Pressurized intraperitoneal aerosol chemotherapy (PIPAC): a novel treatment for patients with PMP in whom extensive surgery is not possible
In patients diagnosed with pseudomyxoma peritonei (PMP), extensive surgical removal of all visible disease (‘debulking’) combined with instillation of heated chemotherapy in the peritoneal cavity (HIPEC) offers the best chance of cure. However, in some patients,...
Dr Jason Spendelow
Supporting our commitment to living with pseudomyxoma peritonei and appendix cancer, we welcome Dr Spendelow as a medical advisor.
Expansion Exercise with Dr Jason Spendelow
You don’t have to be like or want feelings; you just make room for them and allow them to be there, even if they’re uncomfortable.
Jamie’s Gift Lists – Hospital
I came up with a series of lists because I realized that a lot of people are unsure of what to give or do for a cancer patient but they really want to find a way to help. Some gifts may not feel like gifts but really are very useful. I always appreciate useful.
Coronavirus Vaccines
Pseudomyxoma Survivor has received a number of inquiries as to whether people with a diagnosis of pseudomyxoma peritonei (PMP) or appendix cancer should have a COVID-19 vaccination.
BromAc trial in Spain
Dr Arona Sanchez from Cordoba tells us about an exciting new trial for patients experiencing a recurrence of PMP.
Photo credit: Hellerhoff, CC BY-SA 3.0, via Wikimedia Commons
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?
Your sexual health after treatment
Sexual dysfunction was identified in 87% of respondents in a survey of cancer survivors.
Extending our emotional support programme
Announcing our workshops which are intended to be quite practical and interactive, so people will be encouraged to participate and ask questions where they feel comfortable.
Second wave survey
Cancer52 has launched a survey to understand how the second wave of the coronavirus pandemic is impacting our community.
The Gifting Season continues
All ready for tomorrow’s trip to the Christie. A little something for each of the staff that help to look after Pseudomyxoma Survivors.
The Gifting Season is Underway…
Our first box of Christmas goodies is going out tomorrow – our way of saying “thank you” to the amazing hospital consultants and staff that have helped look after pseudomyxoma survivors on the wards.
An After Dinner Chat With…
Join Nils Blythe for a series of after dinner talks with people you’ll want to listen to, all from the comfrot of your own home.
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.
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.
I had abdominal pain and a small hard lump to the left
When I had abdominal pain and a small hard lump to the left, thought to be IBS playing up and that I needed to get it under control. It wasn’t that simple.
Big Blue Thank You
The team here at Pseudomyxoma Survivor are excited to be supporting Big Blue Thank 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.
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.
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.