We hope you’ve been keeping safe and healthy during lockdown. Lockdown has gone on for weeks but at least the sunshine here has made everything feel better. We’re forecast a cold snap, let’s hope we can get back to sunshine quickly. Those of us undergoing treatment like chemo and cancer surgery are still designated as ‘clinically extremely vulnerable’ and strongly advised to stay at home at all times and avoid any face-to-face contact.

A lot has changed through lockdown over the last couple weeks, so we’ve compiled some of the updates most relevant to the Pseudomyxoma Survivor community.

Access to cancer surgery should be easier

Thousands of people living with cancer have found that normal treatment like chemo has been greatly reduced and even put on hold because of coronavirus. Now the NHS has now issued new guidance on cancer treatment, urging trusts to keep providing essential services. Trusts have been told to ringfence diagnostic and surgical capacity for cancer and we’re seeing special coronavirus-free cancer treatment sites pop up across the country to make sure we can get the treatment and care we need. Make sure to contact your GP or specialist to see what’s happening with your treatment and care plan.

Canine cancer care?

Dogs have provided some solace for people in lockdown with the RSPCA and Dogs Trust looking for new foster homes, so eyes peeled if you don’t have a canine companion.

Arguably more powerful than their companionship is their sense of smell, and researchers have found that some dogs even have the ability to smell ovarian cancer. Scientists at the University of Pennsylvania are hoping to make early cancer detection the next frontier for canine-human collaboration by making a device that works in the same way as dogs trained to detect the scent of ovarian cancer.

It may be good news for a pseudomyxoma peritonei (PMP) diagnosis too – PMP is often confused with ovarian cancer, so possibly these smell tests could help to distinguish between PMP and ovarian cancer. Could these dogs or devices feature in PMP treatment after coronavirus? Watch this space!

Remember, a dog is for life not just for lockdown.

Rare Voices Australia Advocacy

 

We’re active with our membership ‘umbrella’ organisations for both rare cancers and rare diseases more generally. As members of the Rare Voices Australia network, we’re supporting their COVID-19 advocacy activities. These include

  • Flexible school attendance requirements for the rare disease community
  • Critical care guidelines for Australians living with a rare disease
  • Priority COVID-19 testing and turnaround times for people living with a rare disease
  • Life Saving Drugs Program (LSDP)
RVA has also confirmed that their 2020 National Rare Disease Summit has been postponed to 2021, with the date to be confirmed.

Track, trace and privacy

Many countries are now developing smartphone apps which can be used to let people know if they have been in close contact with someone who later reports positive for Covid-19. The purpose of contact-tracing apps is to try and track down people and alert them of the need to self-isolate faster than traditional methods.

Naturally, this has raised security and privacy concerns for some and we are keeping a close eye on how this develops and any implications for our community.

The Information Commissioner’s Office (ICO) in the UK will be focused on three key areas:

  • Protecting public interests
  • Enabling organisations to engage in responsible data sharing
  • Monitoring intrusive and disruptive technology

We support the ICO’s call for the principles of data protection by design and default at the forefront of any app going forward.  We’ll keep you up to date with the rollout of the app.

ECRD 2020 – Registration deadline 10 May

The 10th European Conference on Rare Diseases & Orphan Products 2020 (ECRD 2020) will now take place from 14-15 May using an interactive online platform.

It is now possible for more of us than ever before to register to participate online from wherever you are in the worldRegistration by credit card, closes on the 10 May.

Conference organisers EURORDIS along with co-organisers Orphanet and ECRD partners are building a unique and engaging experience with the support of a team of experts experienced in creating online events.

Our COVID Voices

Life has changed for all of us. It’s important that the voices of people most affected by changes are heard as decisions are being made about health is delivered. You can make your voice heard at the website OurCovidVoices, a place to write about your experience during the coronavirus pandemic. It’s easy to contribute and you can share anything you want to. For more information visit the website.

https://ourcovidvoices.co.uk/

PMP Survivor and the 2.6 challenge – how can you help?

Lockdown has been long and arduous, but while homebound people’s creativity has flourished. The coronavirus pandemic has had a catastrophic effect on charity fundraising with the cancellation of thousands of events and the loss of billions in income through fundraising events.

We are all facing a difficult time. As a charity, we raise almost all our funds through challenges Team PMP undertake. Sadly, everything we had planned is now cancelled or indefinitely postponed and our funds have dwindled.

We’re not alone. This applies to many many charities throughout the U.K. Hence the creation of the #twopointsixchallenge.

This is a chance for you, your family and friends, and your business to create your own challenge and raise a few pounds along the way.  Join in and set yourself a 2.6 Challenge to help raise awareness of PMP and appendix cancers as well as raise some funds for Pseudomyxoma Survivor. All you need to do to help is to create your own 2.6 Challenge page or complete a challenge and donate.

So what counts as a 2.6 challenge? Anything!

26 yoga poses? 26 flower photos? 26 muffins (save some for us!)? Try any of them, post on social media, tag us and use the hashtags #twopointsixchallenge and #pmpsurvivor and make a donation.

We’ve seen lots of other fundraising challenges like #binsforbucks (you need to look this up yourself to believe what it is).

Let’s try some of our own #pmpsurvivor ones – ideas welcome. Flower photos for funds? Cat photos against cancer? It’s your call!

We hope to see lots of you helping out; in the meantime, have a great weekend and stay safe!

Anne
Trustee

Our coronavirus resources are available here – https://www.pseudomyxomasurvivor.org/coronavirus-covid-19-update/

Please do keep an eye on the News section on our website.

We are open to support you during this crisis. If you need support, please do contact us via our contact page on the website. If you are feeling unwell or believe you may have undiagnosed pseudomyxoma peritonei, SEEK MEDICAL ADVICE. If you are unsure, please contact us and we will do our best to offer you advice.

Please note that our online shop is open with a restricted number of items available as we are shielding at home and getting to the post office to post ordered items is therefore difficult.