Biweekly insight on PMP

Given the difficult situation we find ourselves in, we wanted to ensure that everyone in our community receives the extra support they need from us.

That’s why we have decided to launch a new initiative to send you more regular updates on topics which you may find of interest. This will be the first in a series of biweekly posts providing information on patient’s stories, politics, and healthcare updates, and will be followed by more on PMP and support during the Coronavirus pandemic.

Johnny Vegas supports PMP survivors

The PMP patient community news of this week is all about a well-known comedian Johnny Vegas, of QI acclaim, who has been working with the Steve Prescott Foundation to deliver food to those struggling to get their shopping done. The Foundation, named after former rugby player and pseudomyxoma peritonei survivor-cum-activist Steve Prescott, raises money for the Christie Hospital in Manchester which provides specialist PMP treatment. In further community-spirited activities, Johnny is getting his haircut LIVE on Channel 4 ttoday at noon to raise money for the Foundation, so make sure to tune in and support this initiative.

Please also contact us to talk about any issues such as the food shop – we know there’s many of us who are considered extremely vulnerable patients who cannot leave their homes even for shopping. While there is limited access to deliveries because of unprecedented demand, we’re here to give you some recommendations on where to look for help. We can’t promise Johnny, but the NHS has a raft of volunteers across the country to support vulnerable individuals in isolation.

Update on NICE Guidance on anticancer treatment

Speaking of self-isolation, it’s important to keep abreast of the rapidly changing government advice on self-isolation and treatment guidance for those living with cancer. NICE guidance on anticancer treatment is frequently updated and now advises against treatment for any non-urgent control of cancer for those suspected to have coronavirus. Keeping an open dialogue on such matters with your doctor and our support network is of vital importance.

If you are not a member yet, then we want to encourage you to join our online support group and share your stories on treatment trouble and travails in self-isolation. Being cut off from a friendship network is one of the most crushing aspects of the coronavirus pandemic; as such, it’s even more important that our Survivor network remains active and there for one another.

Join our Facebook group

This is for you if you’ve been in some way affected by PMP, appendix cancer or another peritoneal surface disease. Our group is a private, secure place to share diagnoses, treatment options, support and the highs, lows and bits in between. Only fellow members can see you’re in the group and read your posts. And best of all, we all understand what you’re going through. You can join the Facebook group here.

We want to hear your story

Many people find it helps to talk about their experiences and it can be helpful for others who are going through the same. If you would like to share your story with us and with other survivors, we’d love you to get in touch with us!

Thank you to each and every one of you who support us, we couldn’t do it without you.

In the meantime, please stay safe and sound over the weekend and have a lovely Easter

Susan Oliver
Chair
Pseudomyxoma Survivor