Pseudomyxoma Survivor
@pmpsurvivor.bsky.social
Pseudomyxoma Survivor is a charity (registered in England & Wales, no 1143642) that provides support, information, and advocacy for those affected by pseudomyxoma peritonei and other appendix cancers.
Maddy Lomas has set up our stand at #PSOGI2025!
This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together.
Tim Brill speaks this afternoon!
#PMPAwareness #AppendixCancer #RareCancer
This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together.
Tim Brill speaks this afternoon!
#PMPAwareness #AppendixCancer #RareCancer
October 29, 2025 at 11:41 AM
Maddy Lomas has set up our stand at #PSOGI2025!
This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together.
Tim Brill speaks this afternoon!
#PMPAwareness #AppendixCancer #RareCancer
This year, PMP patient groups from 🇬🇧🇺🇸🇫🇷🇳🇱🇪🇸 unite to launch the International Barcelona Patient Manifesto, the first time our voices are heard together.
Tim Brill speaks this afternoon!
#PMPAwareness #AppendixCancer #RareCancer
30th Oct, #psogi2025 in #Barcelona , patient associations will present the #PatientManifesto on #PeritonealMalignancies
Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers.
#HealthAdvocacy #GlobalCollaboration
Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers.
#HealthAdvocacy #GlobalCollaboration
October 22, 2025 at 6:04 PM
30th Oct, #psogi2025 in #Barcelona , patient associations will present the #PatientManifesto on #PeritonealMalignancies
Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers.
#HealthAdvocacy #GlobalCollaboration
Using #patientvoice to highlight the needs, challenges, & hopes of those living with appendix cancers.
#HealthAdvocacy #GlobalCollaboration
To our incredible runners in the #RoyalParksHalf today #TeamPS - Francesco, Cardhelle, Josh, Jane, Emma, Kaelan, Andrew, Joe, Anthony, Nicola.
#ThankYouRunners for every mile, step, bit of energy you’re putting in.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor
#ThankYouRunners for every mile, step, bit of energy you’re putting in.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor
October 12, 2025 at 8:53 AM
To our incredible runners in the #RoyalParksHalf today #TeamPS - Francesco, Cardhelle, Josh, Jane, Emma, Kaelan, Andrew, Joe, Anthony, Nicola.
#ThankYouRunners for every mile, step, bit of energy you’re putting in.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor
#ThankYouRunners for every mile, step, bit of energy you’re putting in.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor
#teamPS at the #RCGPAC25, #raisingawareness among 2,400 GPs. Maddy, Anne & Jo are ready to start conversations, share stories, & help frontline medical professionals recognise our ultra-rare cancer sooner.
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
October 10, 2025 at 9:57 AM
#teamPS at the #RCGPAC25, #raisingawareness among 2,400 GPs. Maddy, Anne & Jo are ready to start conversations, share stories, & help frontline medical professionals recognise our ultra-rare cancer sooner.
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
#AppendixCancer #PseudomyxomaSurvivor #RareButReal #EarlyDiagnosisMatters
We are optimistic that Jess’s Rule could make a real difference for the PMP community.
Find out more: www.gov.uk/.../jessica-....
#JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor
Find out more: www.gov.uk/.../jessica-....
#JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor
www.gov.uk
September 25, 2025 at 3:26 PM
We are optimistic that Jess’s Rule could make a real difference for the PMP community.
Find out more: www.gov.uk/.../jessica-....
#JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor
Find out more: www.gov.uk/.../jessica-....
#JesssRule #PMPAwareness #RareCancer #AppendixCancer #EarlyDiagnosisMatters #PseudomyxomaSurvivor
“How are you doing?” can be overwhelming, the answer might be complicated/exhausting to explain.
“How was your day?” allows space for the good/hard, without pressure.
Words matter, compassion lives in subtleties.
#PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor
“How was your day?” allows space for the good/hard, without pressure.
Words matter, compassion lives in subtleties.
#PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor
September 22, 2025 at 9:27 AM
“How are you doing?” can be overwhelming, the answer might be complicated/exhausting to explain.
“How was your day?” allows space for the good/hard, without pressure.
Words matter, compassion lives in subtleties.
#PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor
“How was your day?” allows space for the good/hard, without pressure.
Words matter, compassion lives in subtleties.
#PMPAwareness #RareCancer #AppendixCancer #PseudomyxomaSurvivor
Two different trials that may offer alternative treatments for PMP🤞in the future. We’ll keep you updated as more information emerges on either trial.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch
September 21, 2025 at 7:16 PM
Two different trials that may offer alternative treatments for PMP🤞in the future. We’ll keep you updated as more information emerges on either trial.
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch
#PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #BromAcTrial #PIPACTrial #RareCancerResearch
Jane & Emma are running #RoyalParksHalf, 12 Oct, #InMemory of Jane's Mum who died from PMP.
Thank you for doing this & honouring your mum.
Support them here - www.justgiving.com/page/kate-bo...
#teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane
Thank you for doing this & honouring your mum.
Support them here - www.justgiving.com/page/kate-bo...
#teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane
September 12, 2025 at 11:01 AM
Jane & Emma are running #RoyalParksHalf, 12 Oct, #InMemory of Jane's Mum who died from PMP.
Thank you for doing this & honouring your mum.
Support them here - www.justgiving.com/page/kate-bo...
#teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane
Thank you for doing this & honouring your mum.
Support them here - www.justgiving.com/page/kate-bo...
#teamjane #PMPAwareness #PseudomyxomaSurvivor #FundraisingForHope #RunForACause #TeamJane
This is a major step forward in the long journey towards new treatment possibilities for PMP. 🤞
#Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch
#Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch
September 10, 2025 at 10:32 AM
This is a major step forward in the long journey towards new treatment possibilities for PMP. 🤞
#Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch
#Pseudovax #PMPAwareness #AppendixCancer #PseudomyxomaSurvivor #ResearchMatters #ClinicalTrials #HopeThroughResearch
To everyone affected by appendix cancer & PMP: we see your strength. We’re with you & we’ll keep raising awareness not just in August, but every day after.
#AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay
#AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay
September 1, 2025 at 7:25 AM
To everyone affected by appendix cancer & PMP: we see your strength. We’re with you & we’ll keep raising awareness not just in August, but every day after.
#AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay
#AppendixCancerAwareness #PMPAwareness #RareCancerCommunity #TryAgainTomorrow #EndOfAwarenessMonth #AwarenessEveryDay
At just 12 years old, Flynn is shaving his hair on 27th Sept to raise money for PS. His mum, Tracy, was diagnosed with PMP when he was only 9.
👉 Support Flynn’s fundraiser:
gofundme.com/.../help-fly....
#FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart
👉 Support Flynn’s fundraiser:
gofundme.com/.../help-fly....
#FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart
August 30, 2025 at 11:19 AM
At just 12 years old, Flynn is shaving his hair on 27th Sept to raise money for PS. His mum, Tracy, was diagnosed with PMP when he was only 9.
👉 Support Flynn’s fundraiser:
gofundme.com/.../help-fly....
#FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart
👉 Support Flynn’s fundraiser:
gofundme.com/.../help-fly....
#FindYourBrave #PMPAwareness #ShaveForACause #TeamFlynn #LittleHeroBigHeart
Kay is running the Great North Run 2025 for us!
A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on!
Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand...
#GreatNorthRun2025 #PMPAwareness #RunForACause
A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on!
Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand...
#GreatNorthRun2025 #PMPAwareness #RunForACause
August 29, 2025 at 4:40 PM
Kay is running the Great North Run 2025 for us!
A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on!
Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand...
#GreatNorthRun2025 #PMPAwareness #RunForACause
A champion for PMP rehab needs, she’s helped shine a light on how vital physio + recovery support are after surgery. Let’s cheer her on!
Support Kay: ajbellgreatnorthrun2025.enthuse.com/pf/kay-stand...
#GreatNorthRun2025 #PMPAwareness #RunForACause
Sue is running the #GreatNorthRun2025 she is a supporter & advocate #PMPAwareness. She has hosted online #physioforPMP, helping them regain strength & confidence. #ThankYouSue
ajbellgreatnorthrun2025.enthuse.com/.../sue...
#AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters
ajbellgreatnorthrun2025.enthuse.com/.../sue...
#AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters
August 29, 2025 at 12:28 PM
Sue is running the #GreatNorthRun2025 she is a supporter & advocate #PMPAwareness. She has hosted online #physioforPMP, helping them regain strength & confidence. #ThankYouSue
ajbellgreatnorthrun2025.enthuse.com/.../sue...
#AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters
ajbellgreatnorthrun2025.enthuse.com/.../sue...
#AppendixCancer #PMPSurvivor #RunForACause #SupportOurSupporters
This #appendixcancerawarenessmonth, we pause to honour those we have lost to #appendixcancers #PMP. Their voices continue to echo in our hearts & actions. #Inmemory, we recommit to raise awareness, fund research, & support those living with cancer.
#LifeAndLoss #PMPRemembrance
#LifeAndLoss #PMPRemembrance
August 26, 2025 at 9:22 AM
This #appendixcancerawarenessmonth, we pause to honour those we have lost to #appendixcancers #PMP. Their voices continue to echo in our hearts & actions. #Inmemory, we recommit to raise awareness, fund research, & support those living with cancer.
#LifeAndLoss #PMPRemembrance
#LifeAndLoss #PMPRemembrance
"Are there any research trials for appendix cancer/pmp?" Is one of the questions we’re asked most.
Trials are limited & costly. Our supportive community allows us to fund seed-level research.
You can donate here www.pseudomyxomasurvivor.org/donate/
#RareCancer #appendixcancerawarenessmonth
Trials are limited & costly. Our supportive community allows us to fund seed-level research.
You can donate here www.pseudomyxomasurvivor.org/donate/
#RareCancer #appendixcancerawarenessmonth
August 24, 2025 at 5:50 PM
"Are there any research trials for appendix cancer/pmp?" Is one of the questions we’re asked most.
Trials are limited & costly. Our supportive community allows us to fund seed-level research.
You can donate here www.pseudomyxomasurvivor.org/donate/
#RareCancer #appendixcancerawarenessmonth
Trials are limited & costly. Our supportive community allows us to fund seed-level research.
You can donate here www.pseudomyxomasurvivor.org/donate/
#RareCancer #appendixcancerawarenessmonth
"When you hear hoofbeats, think horses, not zebras."
A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra!
#ZebraStrong #RareDiseaseAwareness
#PMPZebra
A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra!
#ZebraStrong #RareDiseaseAwareness
#PMPZebra
August 23, 2025 at 4:51 PM
"When you hear hoofbeats, think horses, not zebras."
A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra!
#ZebraStrong #RareDiseaseAwareness
#PMPZebra
A phrase medical students use to consider common diagnoses before #rarecancer. However, for some patients, this mindset can lead to misdiagnosis, sometimes it really is a zebra!
#ZebraStrong #RareDiseaseAwareness
#PMPZebra
PMP, a rare & complex disease, requiring specialised treatment. Early referral to an expert can make a significant difference in outcomes. Patients advocating for their own healthcare, is pivotal. #patientadvocacy #PMPExpert #pmpCare #CRSHIPEC #SpecialisedTreatment #appendixcancerawarenessmonth
August 22, 2025 at 1:18 PM
PMP, a rare & complex disease, requiring specialised treatment. Early referral to an expert can make a significant difference in outcomes. Patients advocating for their own healthcare, is pivotal. #patientadvocacy #PMPExpert #pmpCare #CRSHIPEC #SpecialisedTreatment #appendixcancerawarenessmonth
There are actually differ types of #appendixcancer & #pseudomyxomaperitonei, some are more aggressive.
Early diagnosis & access to specialised care make all the difference.
Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer
Early diagnosis & access to specialised care make all the difference.
Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer
August 20, 2025 at 6:13 PM
There are actually differ types of #appendixcancer & #pseudomyxomaperitonei, some are more aggressive.
Early diagnosis & access to specialised care make all the difference.
Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer
Early diagnosis & access to specialised care make all the difference.
Raise #AppendixCancerAwareness #PMPAwareness, spark conversation, & support those facing #RareCancer
Even during Appendix Cancer Awareness Month, we’re allowed to laugh. In fact, sometimes we need to. Here’s to strength, science, and still finding reasons to smile.
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
August 20, 2025 at 10:01 AM
Even during Appendix Cancer Awareness Month, we’re allowed to laugh. In fact, sometimes we need to. Here’s to strength, science, and still finding reasons to smile.
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
#AppendixCancerAwareness #RareButReal #LaughterIsMedicine #PMPAwareness #PseudomyxomaPeritonei #StillSmiling #AppendixCancer
💡 These tests are key to early detection and proper treatment planning.
If symptoms persist and answers are unclear, ask about further investigations.
#AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters
If symptoms persist and answers are unclear, ask about further investigations.
#AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters
August 19, 2025 at 5:21 PM
💡 These tests are key to early detection and proper treatment planning.
If symptoms persist and answers are unclear, ask about further investigations.
#AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters
If symptoms persist and answers are unclear, ask about further investigations.
#AugustAwarenessMonth #PMPDiagnosis #AppendixCancer #TumourMarkers #KnowTheProcess #EarlyDetectionMatters
This Appendix Cancer Awareness Month, we recognise the complex path to diagnosis.
That’s why our message is simple but powerful: Trust your gut.
Listening to your body can make all the difference.
#PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut
That’s why our message is simple but powerful: Trust your gut.
Listening to your body can make all the difference.
#PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut
August 16, 2025 at 5:31 PM
This Appendix Cancer Awareness Month, we recognise the complex path to diagnosis.
That’s why our message is simple but powerful: Trust your gut.
Listening to your body can make all the difference.
#PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut
That’s why our message is simple but powerful: Trust your gut.
Listening to your body can make all the difference.
#PMPAwareness #AppendixCancer #AugustAwarenessMonth #KnowTheSigns #TrustYourGut
Early detection can save lives, push for answers if you have abdominal symptoms that can not be explained.
#PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness
#PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness
August 15, 2025 at 6:05 PM
Early detection can save lives, push for answers if you have abdominal symptoms that can not be explained.
#PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness
#PMPSymptoms #AugustAwareness #EarlyDetectionMatters #AppendixCancerAwareness
All the way from Gibraltar... to support us!
@KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv
#AppendixCancer #AwarenessIntoAction #TeamSurvivor
Support Kaelan here - www.justgiving.com/fundraising/...
@KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv
#AppendixCancer #AwarenessIntoAction #TeamSurvivor
Support Kaelan here - www.justgiving.com/fundraising/...
August 12, 2025 at 11:24 AM
All the way from Gibraltar... to support us!
@KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv
#AppendixCancer #AwarenessIntoAction #TeamSurvivor
Support Kaelan here - www.justgiving.com/fundraising/...
@KaelanJoyce is determined to raise awareness and funds by running the #RoyalParksHalf. We have a few places - bit.ly/45R1vYv
#AppendixCancer #AwarenessIntoAction #TeamSurvivor
Support Kaelan here - www.justgiving.com/fundraising/...
This is Appendix Cancer Awareness Month. Awareness without action is worthless. Real change happens when awareness leads to action. Share info, support patients & research, push for earlier diagnoses & better treatments, your involvement matters.
Learn. Share. Donate. Advocate.
Learn. Share. Donate. Advocate.
August 11, 2025 at 11:03 AM
This is Appendix Cancer Awareness Month. Awareness without action is worthless. Real change happens when awareness leads to action. Share info, support patients & research, push for earlier diagnoses & better treatments, your involvement matters.
Learn. Share. Donate. Advocate.
Learn. Share. Donate. Advocate.
#Bex is doing a fantastic job for #pseudomyxomaAwareness. The BBC - www.bbc.co.uk/news/article..., & coverage on BBC Radio Cumbria & Look North. This is for the @chrishoy #TourDe4, raising funds for @PMPSurvivor. Cheer her as she rides to make a difference & inspire!
#RareDiseaseAwareness #TeamBex
#RareDiseaseAwareness #TeamBex
August 7, 2025 at 10:24 AM
#Bex is doing a fantastic job for #pseudomyxomaAwareness. The BBC - www.bbc.co.uk/news/article..., & coverage on BBC Radio Cumbria & Look North. This is for the @chrishoy #TourDe4, raising funds for @PMPSurvivor. Cheer her as she rides to make a difference & inspire!
#RareDiseaseAwareness #TeamBex
#RareDiseaseAwareness #TeamBex