Pseudomyxoma Survivor

The support network for those affected by pseudomyxoma peritonei, appendix cancer and peritoneal surface malignancies

If you’ve found Pseudomyxoma Survivor, chances are you’ve been affected in some way by pseudomyxoma peritonei (PMP), appendix cancer or another peritoneal surface malignancy. We’re here to provide emotional support and practical advice, through an online community that’s proven to make a real difference.

We’re a patient and caregiver run organisation offering advice on managing symptoms and all aspects of living with this rare disease; we advocate for patients and more. As well as all this, we’re people you can share experiences with and share the laughter and the tears.

Together we’re stronger and can face anything.

Community

Find out more about our online spaces where you can meet other people affected by PMP, including a ‘secret’ Facebook group.

More about PMP

We share information about pseudomyxoma peritonei. It isn’t like other types of cancer and it can get confusing. We can help with that.

Buddies

A one to one, personal and confidential friend to supplement the support already given by your family, friends and doctors. Our Pseudomyxoma Buddies offer a sympathetic ear and insight from their own experience.

About Us

We offer practical and emotional advice on managing symptoms and all aspects of living with this rare disease, advocate for patients and more.

Stories from across the world

 

Cancer-associated thrombosis (CAT) survey

Can you help build a better understanding of patient awareness about thrombosis? New patient survey launched across Europe (including the UK).

People with cancer have a higher than normal risk of developing a blood clot – a condition known as cancer-associated thrombosis (CAT). Yet it remains under-reported, seldom discussed and often misdiagnosed.

read more

I was misdiagnosed by my first surgical oncologist

When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…

read more

MOAS – It’s not a race

Take your time, there’s no rush, go at your own pace and don’t feel pressured to be at a certain stage, just because someone else is. You’ll get there, in your own time, be happy still to be breathing and above ground……..

read more

From patients and from caregivers

Being relatively new to the group, I just wanted to say how cool I think it is that we are from all over the world and yet we share and are brought together by something so life changing. It is something that bonds us together in a way that shared nationality or age or gender alone never could. I just wanted to let all of you know how much I value knowing you are out there and supporting each other.

Linda

PMP patient

Life and its uncertainties are hard enough as a cancer patient but when your income is so low that you don’t have the money to travel to see a cancer specialist, the door of hope and a future for your life is closed to you. That’s what I was facing, but Pseudomyxoma Survivor gave me a financial grant which opened that door for me so I could travel to see my cancer specialist to get the treatment I desperately needed to save my life. They are lifesavers.

R

PMP patient

When I was first diagnosed with an appendiceal tumour, I was terrified. All the information I found initially on the Internet talked about awful outcomes, local doctors knew less than I did, and suddenly I was being treated miles from home. I was very pessimistic about the future. When I found this website, suddenly things started looking more hopeful.

Sarah

appendix cancer patient

I found this website extremely useful with answering questions when I was first diagnosed with pseudomyxoma peritonei. I am almost a year post diagnosis and I could not of managed without the support, the answers, the love and hugs sent when you’re down. It’s an amazing site and the support group is full of lovely people.

Pauline

PMP patient

Helping us to help you

Shop with us

Have a look at our t-shirts, technical shirts and more in our shop. What will you buy?

 

We need your support

Pseudomyxoma Survivor relies solely on donations to carry out the work that we do.

 

Specialists and surgeons

Our directory is updated with information provided by the specialists themselves and is constantly reviewed.

 

Get in touch

Whether you are a patient or a caregiver, a medical professional, a fundraiser or a donor, we would love to hear from you. Maybe you just want to find out more information about these diseases.
You can also follow us on Facebook, Twitter, Google+ and YouTube.

 

We are currently posting orders from our shop no more than once a week. Please be patient with us. Dismiss