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Pseudomyxoma Buddies

No one really understands quite like someone who has been there themselves

Rare cancers, like pseudomyxoma peritonei (PMP) and appendix cancers, can be isolating experiences. Speaking to others in a similar situation helps patients feel less alone and alone. You can share stories, advice, resources, and empathy.

We set up our Pseudomyxoma Buddies system to supplement the support already given by your family, friends and doctors. A Buddy offers a sympathetic ear and insight from their own experience; someone who is willing support you by sharing their own experience on a one to one basis. This could happen face to face, by email, or by telephone – which ever you and your Buddy agree works the best. Maybe a Buddy can just help you feel less alone, a virtual hand to hold.

What’s a Pseudomyxoma Buddy?

A Pseudomyxoma Buddy is a volunteer who offers support to someone affected by PMP. They know something of what you’re going through because, as survivors or caregivers themselves, they’ve had similar experiences. Everybody in our global network of Buddies is great at listening and will chat with you on a one-to-one basis in person, via email or over the phone. You choose the level and frequency of contact, depending on what suits you.

Why would I want one?

Because living with PMP is hard. We know sometimes it’s tricky to talk to those closest to you because you don’t want to cause them distress. A Pseudomyxoma Buddy adds another layer of support to complement what family, friends and doctors already provide. They help break the loneliness that so many of us endure.

How does it all work?

If you think a Pseudomyxoma Buddy could help, start by sending us and email. Our Buddy Facilitator will get in touch to find out more about you, match you up to a Buddy and arrange your first contact. Just remember that Pseudomyxoma Buddies aren’t health professionals — they’re there to share information and insight from their perspective. For specific medical questions, always speak to your doctor.

 

Where do the buddies come from?

As Pseudomyxoma Buddies, we are all survivors or carers who volunteer our time to help others. Any information shared 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.

Enquire about our Buddy Programme

Are you a patient or a supporter of a patient (partner, relative, friend)?

Are you

This form collects your name, phone number (optional), email address, and message to enable Pseudomyxoma Survivor to respond to your message. Details of how we protect and manage your submitted data can be found in our privacy policy.

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 Please note that your personal information may be used to notify you of fundraising opportunities or informing you of new items available from our webshop. This is not obligatory and you may opt out by emailing: [email protected], requesting that your personal information be removed. You may also unsubscribe from our electronic marketing content at any time, by selecting the unsubscribe option.

You can email the buddies team directly –  [email protected].

References

Systematic review of peer-support programs for people with cancer

Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Education and Counseling. 2008;70(3):315-337. doi:10.1016/j.pec.2007.11.016

Logging on, reaching out, and getting by

Allison KR, Patterson P, Guilbert D, Noke M, Husson O. Logging on, reaching out, and getting by. Proceedings of the ACM on Human-Computer Interaction. 2021;5(CSCW1):1-35. doi:10.1145/3449169