We hope you’ve been keeping well these last couple weeks, and have been keeping safe and well as the coronavirus pandemic wears on. Health workers and political figures alike have been working hard to ensure we get the medical care and support we need, and we hope you’ve been able to get the care and treatment you need through the pandemic.
Over the last couple of weeks, lockdown restrictions and healthcare provision across the UK and the wider world have changed a lot, and the only constant through the pandemic has been changed.
Our PMP Survivor community has constantly been here. Our online communities are here to provide emotional support to anyone whose life has been touched by pseudomyxoma peritonei (PMP) and similar cancers – our Facebook page, RareConnect group and Buddy system all provide an understanding ear and supportive community to everyone else affected by PMP and appendix cancers. So if you’re not yet a member of one of our communities please sign up today.
We’ve compiled details on some of the big changes affecting members of the PMP community below to help through the next phase of the pandemic.
Breath of fresh air
I’m sure most of us in the UK have been keeping up to date with the government’s guidance for people designated as ‘vulnerable’ and ‘extremely vulnerable’. Thanks to a (relatively) healthy healthcare system and a low infection rate, since Monday those of us designated as ‘extremely vulnerable’ in England have been permitted to leave the house once a day. The change means we will be able to go out with members of our household; if you’ve been living alone through the pandemic, you’ll now be able to meet with someone from another household (while maintaining the all-important 2m distance).
Many of us will still feel uneasy about leaving the house, especially to socialise with members of other households, and we absolutely share those concerns – and that’s exactly why our community is so important. None of us is alone in this. We need each other more than ever as the pandemic wears on, so please do join our community (and share a story if you’re there already!) – we’d love to hear your experiences (and some tips on how to get through this!).
#getscreenedsavelives – cancer care resumption and reorganisation
Over the last month, the Government’s Health and Social Care Select Committee has been reviewing the delivery of NHS and care services through the pandemic and beyond, and lots of patient groups and royal colleges have written in to highlight the difficulties many of us have been facing over the last few months.
One of the outcomes of the inquiry is looking likely to be the increasing segmentation of care provision to protect those of us designated as ‘vulnerable’. Oncology care and treatment pathways will be some of the key restructured services – the new cancer treatment hubs established over the last couple months will likely be here for the years ahead to ensure safe diagnostic and care facilities are around for us if the pandemic persists, as well as to streamline cancer pathways in the long term to ensure we get better treatment.
The ‘forgotten C’
While health services reorganise, clinicians are desperate to get more people back into normal cancer care. In our Pseudomyxoma Survivor community, we have a wealth of experience of the trials and tribulations of cancer diagnostics and care, and one of the best things we can do as a community is encourage as many people as possible to get screened for cancer.
Almost 2.5 million Brits have not been screened, tested, or treated for cancer because of pandemic disruptions, and the number of undiagnosed appendix cancer cases will have ballooned over the last few months. Cancer is going undiagnosed for nearly 2,000 Britons each week, and cancer is threatening to become the ‘forgotten C’ of the coronavirus pandemic.
It’s imperative we get people back into cancer diagnosis and care systems asap, so please raise awareness of the diagnosis issue and encourage as many people as possible to get tested!
The government’s ‘stay alert, save lives’ message sowed a lot of confusion – let’s repurpose it to #getscreenedsavelives to make sure people stay cancer alert.
Estimating the incidence and prevalence of pseudomyxoma peritonei in Europe
A team from Norway and the UK have been looking at the incidence and prevalence of PMP across Europe. They used epidemiological data from the two countries to calculate a minimum incidence rate based on the number of patients having their first surgery for PMP. The prevalence rate was then determined by a method that considered the incidence, death, and cure rates in a multi-year analysis that accounted for the increasing population of Europe over a 10-year period. You can find out more here.
Some Good News – Victories over the VIrus
News updates can be gloomy at the best of times, even more so through the coronavirus pandemic, so we wanted to share a great story of an appendix cancer patient who won her battle against coronavirus. Eliza Paris, who has been living with appendix cancer for two years, found herself in New York, the epicentre of the then mounting coronavirus pandemic, in February. Naturally, she drove south to her home in Georgia asap, but was unable to escape in time and contracted coronavirus. Despite a weakened immune system resulting from months of chemo, compounded by kidney failure and a raft of other health problems, Eliza pulled through after five days in ICU to return to her family. She provides a very moving account of her battle against appendix cancer and coronavirus in the linked article, and we really recommend having a read of the full story. Like many of us, Eliza continues to self-isolate, but is well on the road to recovery from some of the health conditions.
John Krasinski, star of The Office, has dedicated his time to bring us more good news through the pandemic on his Some Good News vlog, and brings us a similar heart-warming story. Among some brilliant features including Oprah and Malala, he brings us the story of a young Californian chemo patient finally returning home to her family despite the pandemic. Krasinski’s vlogs are well worth a watch, especially if you need some (metaphorical) sunshine, so we do recommend spooling through his videos.
What did/do you plan to do after your treatment? Was it finish your training for an Iron Man and take part in it? I can’t say that was top of my list either but it was Paul’s.
If you want to find out it meant to him to use exercise as a positive force that helped both my mental and physical recovery, follow the link to read more.
Pseudomyxoma survivor and ABC journalist, Julia Baird has published her biography in which she describes hyperthermia intraperitoneal chemotherapy (or HIPEC) as “hot poisonous chemicals … poured into an open wound and swilled around”, which pretty much describes it as it is really but sounds brutal to those outside our community. The focus of her book, “Phosphorescence” is very much about what gets you through treatment.
We hope some of us in the Pseudomyxoma Survivor community have experienced similar heart-warming stories, so please join our communities and share with us, and in the meantime stay safe!
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.