Pseudomyxoma Survivor

Thank you to the support of this wonderful organisation. The support I’ve had has been so helpful in times of uncertainty. They also provided me with a grant to help through my recovery whilst I was unable to work as I had my operation November 2024 and it’s been a long and difficult recovery ❤️‍������ x

I was diagnosed with PMP in December 2021 after surgery for what was thought to be a cyst. It was a shock - I was scared, unsure of a future and needed something, someone, somewhere safe that I could tell my story ask for support and ask questions where I would t be judged or told to “be positive”. The group provides so much support and is a safe place for people to ask, cry shout out for some empathy or just to be able to be annoyed - I would have been utterly lost without it. It gave me sanity, practical tips to get through my surgery and recovery and continues to provide all the support I need as well as me being able to hopefully support others.

I am newly diagnosed and still waiting for my treatment plan. Little information given on diagnosis led me to this group. So far it has been invaluable to help manage my anxiety and has given me a safe place to learn about people’s different experiences. This group is essential for mental positive reinforcement in times of the unknown. I am forever grateful

Diagnosed October 2024, it caught me completely off guard and I’ve never felt so alone or helpless. Thankfully I found Pseudomyxoma Survivor. The comfort, support and experience offered by the group has been wonderfully unconditional.
I am at the beginning of my battle, I know I’ll rely on Pseudomyxoma Survivor to see me through and will reciprocate as best I can. Marvellous group of people.

A brilliant support to my friend who has this horrible disease

Pseudomyxoma Survivor offer support for those with pseudomyxoma peritoneum and other cancers of the appendix. The FB support group helps many people with a diagnosis speak peer to peer, something that is essential for mental wellbeing especially with a rare cancer diagnosis. We are not alone.

Being diagnosed with a rare cancer is really scary, especially when you are told you need a major operation. Finding Pseudomyxoma survivor and their Facebook page was a real life line. They provide lots of information and support options and the Facebook group enables you to ask questions and share experiences, helping you to feel less alone in this lonely place. Their work is so valuable!

This charity not only helps raise awareness and money, but provides support to those affected directly and indirectly by PMP, appendix cancer and other rare peritoneal malignancies. My dad was diagnosed with PMP in 2019 and as a family member of someone affected, I have seen how brilliantly they guide and support patients right from the initial diagnosis. In person and online they chat, prepare, educate and reassure people through all stages of the process.

These are special people, I’m terminal and they have helped me immensely I can’t thank them enough. This is a strange disease, no two days are the same. It’s fantastic there are people willing to help. Which I haven’t had a lot of since my diagnosis.

This charity have provided so much support ,both practical and emotional, unparalleled by the bigger well known cancer charities.

The rare nature of the disease made us feel very lonely when Mark was diagnosed with PMP in Dec 2023. A lot of information re prognosis and treatment online is vague, somewhat outdated and frankly frighteningly bleak. That changed when we found the Facebook group managed by the charity. They provide a platform for survivors, patients and carers with first hand experience to share information and offer peer support. Landing on the page provided the first glimmer of hope for us. We learned so much from reading posts and asking questions that nothing came as a huge shock when we met with the consultant and were presented with the surgery plan etc. The group took a lot of the 'fear of the unknown' away and is a safe place to speak freely about the good and bad moments.

We are also aware of a buddy scheme they offer to pair up survivors/long term patients with newer patients, a great opportunity should anyone want to talk peer to peer.

Practically, the charity has also helped fund accommodation for myself and our visiting children and family while Mark underwent his crs and hipec surgery. Eternally grateful for the grant as Mark is self employed and has had to step down from his business since his symptoms took hold in December 23 - a huge worry for a one-wage family with 4 young children at home. We don't receive any benefits etc and not eligible for any other financial help, so that payment from the charity has given us some breathing room to concentrate on recovery in these early weeks post op.

Other cancer charities simply don't have the specific knowledge of this condition, I hope PS gets the recognition it deserves as it has a massive positive impact despite a seemingly small budget.

I was diagnosed with LAMN1 2 years ago and successfully had my appendix removed . Pathology and follow up tests confirmed no evidence of disease and I was on a low risk pathway

Last year , in between my scheduled bi-annual check ups I had a series of blood tests as my sibling was diagnosed with a different form of cancer. My blood tests were out of range and a follow up ct confirmed there were abnormalities.

Some of the cells had mutated to a more aggressive form and I was now facing a new diagnosis of PMP with having surgical treatment CRS and HIPEC.

The cells had seeded from my diaphragm to my pelvis and I had 7 different procedures during the CRS

It all happened so suddenly. From diagnosis to surgery was a matter of months and it left no time to sort home life , apply for benefits and close down my business

Not having any savings I had to wait for benefits to come through and it added a huge amount of stress onto an already difficult time

Pseudomyxoma Survivor really helped me with the family assistance grant. I can not thank them enough for financially helping me

It allowed me to releive the stress of financial arrears and give breathing space to concentrate on recovery

I is a fantastic charity and I will forever be grateful

I was diagnosed in 2019 and reached out through Facebook initially for support. I was able to take part in various online sessions throughout the pandemic such as yoga, menopause and mental health lectures and was one of a handful of people to take part in the first Pinc & Steel rehab physio course after my surgery in 2020. I am absolutely indebted to Pseudomyxoma Survivor for this support and for providing first class information that has enabled and empowered me to take charge of my treatment pathways and seek further help with this awful disease and the life-changing affects of radical surgeries. Through the charity I have been connected with other patients which has also been a lifeline.

In 2022, I partook in a clinical trial which involved several overnight stays; Pseudomyxoma Survivor kindly paid for a close friend to stay locally whilst I was in hospital far from home and latterly has also given me a Family Grant to use towards travel insurance which means that I am now able to go on holiday in March for the first time in a very long time to celebrate 5 years of living, which at the time of diagnosis was fairly unlikely. I am unable to work due to this disease and receive government benefits so this financial help is an absolute lifeline.

Pseudomyxoma Survivor have provided physical, emotional, networking, informative and financial support and for that myself, my family and my friends will be eternally grateful. Collectively, we have been able to fundraise for the charity supporting the development of a vaccine and we will look to continue this.

An incredible small charity run by incredible people. What more can I say ... THANK YOU

My wife has been a member of the Pseudomyxoma Survivor charity support group since my initial diagnosis in 2016. The support within the group has been invaluable. The personal knowledge from the trustees and other member has been extremely beneficial. With a rare disease such as PMP the best source of advice is always from others who have shared the same experience. Even sharing non medical tips; what items to take to hospital, where to get a good cup of coffee(!), what furniture is in the family accommodation at the hospital etc is really helpful, it certainly helps to ease the stress that comes with a cancer diagnosis.
Thank you to all of the team at Pseudomyxoma Survivor.

I can only say that the experience as a family that we went through and how it affected us all was all consuming and the love and respect we were shown throughout was amazing.

I am so pleased to have found this charity since my diagnosis with PMP, it has helped me with information of recent updates and by putting me in touch with others in similar situations. Great cause and I hope when I’m well enough I can help to raise funds to help others as they have helped me.

I was diagnosed with pseudomyxoma peritonei (PMP), a rare form of cancer. I was searching for more information and for support. I found Pseudomyxoma Survivor through an online search and was immediately grateful for their website. This helped me learn more about my diagnosis and the treatment options.
In addition to the website, I connected with their online patient community on Facebook. In the group, I was able to chat directly with other patients going through similar experiences. The sense of community and being able to share ups and downs with others who truly understand made a huge difference in my mental well-being and ability to cope.
I'm so grateful to have found an organisation focused on pseudomyxoma peritonei and appendix cancers, and committed to helping patients. I would highly recommend them to anyone looking to learn more about PMP

This amazing charity gave fantastic support to my friend and her family and helped her come to terms with her diagnosis of psuedomyxoma. The website also really helped me understand her cancer which in turn enabled me to support her better.

Brilliant charity...they do amazing work and provide valuable information and support to families and friends..

Pseudomyxoma Survivor is an amazing charity committed to improving the life of anyone diagnosed with Pseudomyxoma Peritonei and Appendix Cancers. The information provided by them was invaluable to me when I was first diagnosed and it made all the difference.

In addition, the Pseudomyxoma Survivor Community is very supportive and it's helpful to connect with others walking a similar path to share and compare experiences.

Finally, the Trustees and Volunteers put so much time and effort into the smooth running of the Charity with the sole intention of making it a better place for all concerned. I am grateful for all they have done and continue to do.

AM Davy

Such a fantastic charity that offer a little glimmer of hope to myself and my family it what felt like a Hurricane. Myself and my wife are extremely grateful for the assistance provided to us

I was diagnosed with PMP in May 2022 which was very scary as did not know anything about this. I have now had surgery CRS+HIPEC in December 2022 and now recovering. Had a lot of support from the medical team at Basingstoke,family, friends also a lot of support and information from the Psuedomyxoma Survivor Group they also helped financially with a grant towards costs/expenses which I was very grateful for and appreciated. I had never heard of this rare cancer and came across this support group and they provided information etc which helped me understand it more.
Jane M - Essex

I was first diagnosed sept 2020, I was told about this amazing charity by someone I had met on my journey with the same cancer.
Being out of work and not having an income during cancer treatment is an added stress that shouldn’t be there. I reached out to PMP charity and they were so supportive and really helped me out when I needed it most.
My cancer has now returned and again there available to support me. Forever grateful x

I was diagnosed with with stage 4 appendiceal goblet ring cell adenocarcinoma in 2021. Needless to say it turned our life upside down. When you are diagnosed with a rare cancer, you realise that finding information is quite some work on its own. I am so grateful I came across Pseudomyxoma Survivor, not only is the group one of the best information sources for PMP patients, but the community and the charity feels like family.
Due to my ongoing chemotherapy I am unfit for work which meant a significant pay cut to our finances. We are a young couple with a little 2.5 years old toddler and we were really longing for a short break to to get a break from the hardship of fighting this beast.
Thanks to the Trustees we were given a family assistance grant which we spent towards a little get away. Words can not describe the love and gratitude we feel towards the charity! Not to mention, that we got the grant on my 40th birthday, which made the day even more memorable.
Thank you for the wonderful work you are doing!

I found this charity shortly after being diagnosed with stage 4 appendix cancer. I thought my life was over. Through the information, support and friendships I have gained from this organisation I am hopeful and currently healthy. They have literally been a lifeline to me in a way that supplements the excellent work that the Health services provided. They understood and encouraged me all the way.

I was diagnosed with PMP in June 2020. I felt as if my world had fallen apart! Having such a rare type of cancer, there were minimal support groups online. Until I came across this group. The support I received has been fantastic. I have made some friends for life on this group, and am extremely grateful for all the support I have received.
Thank you. ������.

I recently had my diagnosis and have had to travel to the Christie hospital in Manchester for the consultation and follow up appointments. It has been really expensive getting the trains etc however the organisation has provided me with a grant of £100 which has helped towards the travel costs. This has been gratefully received and has been one less worry for me with everything that is happening at the moment.

I was diagnosed with PMP in late 2020 and had the huge surgery, CRS + HIPEC in mid 2021. The surgery was lifesaving but I have also needed a lot of support along the way, from my medical team, family and friends and really importantly the support of Psuedomyxoma Survivor. The group has provided my family and I information on this rare cancer, encouragement and hope during what has been a very difficult time. I also received a much needed family grant. I haven’t yet been well enough to work and the grant has helped pay some of our expenses. I am very grateful for the support of Psuedomyxoma Survivor and knowing that the group is there is wonderful balm to anyone going through this disease.

I was diagnosed with appendix cancer in Jan 2018 after my appendix ruptured. I have since undergone cytoreductive surgery with HIPEC and a six month course of chemotherapy. Finding other people that have experienced similar and reading their stories has helped me understand and cope with my battle against this disease. Pseudomyxoma Survivor has also helped financially through the grant scheme. It allowed me and my family to have much needed family day out when our income was massively reduced. Pseudomyxoma Survivor has been there to help me and my family through and it made a massive difference! Thank you.

I’ve had a really bad year which started feb 21 with a perforated appendix that was infected I was in hospital for a long time getting over it, fast forward oct 2021 had a 12 hour operated as I had mucus everywhere, what with being off work I was eventually put on ssp and got behind on bills, I saw this charity and filled in the paper work which was easy, a few weeks later I get a email asking a few more questions I then receive another email saying the charity has donated my family some money, we were at our wits end with money worries and this money has given us light at the end of the tunnel.. we can’t thank them enough for the support it has now given us. Thank you from the bottom of my heart!

Having been diagnosed with Pseudomyxoma Peritonei (PMP) in 2020, I was thrown in to the world of metastatic cancer. One of my first thoughts, after how I would explain this to our young children, was “how are we going to pay the bills?”

We’ve been very fortunate to receive a grant from Pseudomyxoma Survivor, this helped to cover the cost of two weekly transport costs to and from The Christie Hospital which is more than 100 miles from our home. It’s been so important to my health and care that I’m able to get to this centre of excellence for PMP and I’ll be forever grateful for this financial help.

This charity is amazing. Was a real support to my friend when she was struggling with cancer of the appendix. So good at what they do! All in all a wonderful charity.

Being diagnosed with pseudomyxoma peritonei after 2 surgeries to remove an 'ovarian cyst' and my appendix (shortly after getting married), I was put on watch and wait and told to freeze embryos. After 2 years I needed cytoreductive surgery and hipec, which definitely took it's toll on me! After 6 weeks in hospital I returned home for a long period of recovery. During this time I thankfully discovered Pseudomyxoma Survivor and their Facebook group which has offered no end of advice and support for all the challenges of life after cytoreductive surgery. The support also enabled me to be positive during my recovery, even on days I was feeling low and fatigued. Even recently, now 6 years after my big surgery, they have put on webinars that have really helped me understand and deal with some of the repercussions of life without certain organs! I can honestly say my life would not be the same if it weren't for Pseudomyxoma Survivor!

My brother has suffered from Pseudomyxoma and when he was going through the disease and treatment, the support from this amazing nonprofit was incredible. I can do no more than give the highest praise the work they do to support sufferers and family alike.

I was diagnosed with appendix cancer in June 2021 after my appendix ruptured. I have since undergone cytoreductive surgery with HIPEC and am due to begin a further course of chemotherapy.
Whilst recovering from surgery in Basingstoke I was first made aware of this fantastic charity. Finding other people that gave similar experiences and reading their stories has helped me understand and cope with my battle against this disease. Pseudomyxoma Survivor has also helped financially through the grant scheme. My claim was handled quickly and has really helped the burden of losing income whilst receiving treatment.
I know that I have much further to go in my journey and there will be hard times ahead, but I also now know Pseudomyxoma Survivor is there to help me and my family through it and that makes a massive difference! Thank you.

I was diagnosed with appendix cancer in 2007. This group/organization has been by my side for much of my journey; tightly by my side over recent years. Diagnosed originally by a tumor of appendiceal origin encompassing my ovary. After my initial treatments by appendix cancer experts, I went on to be NED (No Evidence of Disease) for 8 years. However, in the past 5 years, I've undergone 5 surgeries, multiple cycles of intraperitoneal chemo; multiple iterations of systemic chemo, and am now incurable and on palliative care. If it weren't for this organization and the wonderful people in it, I don't know how I'd cope. We all understand where I am in my cancer journey, and the support I'm getting is on how to live, not merely exist. I've befriended some members of the group such that I consider them very close friends; people who understand and with whom I can laugh and cry.
Thank you Pseudomyxoma Survivor!

After my original diagnosis of Bowel cancer, to be told I had a peritoneal malignancy struck even more fear into me. What us a peritoneal malignancy? Where can I get information advice and support? That's where Pseudomyxoma survivor helped me so much. Thanks to this wonderful charity I knew what to expect when I had my operation.

Amazing levels of support from this charity, people who understand this rare disease. Also fantastic webinars from Psychologists, Pathologists and Specialist Doctors.
I could not have coped so well and also made some great friends

PMP is so rare it’s difficult to find anyone who knows what it is or understands the challenges that we as patients or caregivers experience. It’s great to find a caring community that truly understands the physical and/or psychological challenges we face. At times when I have been particularly stressed I have turned to the group and found others have felt the same way. The group is always there for me, and also a good source of information when I need answers!

I was diagnosed with PMP in March 2020 and had the 'Mother of All Surgeries'. I went from being a very fit and active 43 year old to someone who could hardly walk in the space of a few weeks, and the welcome and support I received from Pseudomyxoma Survivor helped me pull through this difficult time. In particular it was good to hear from others with this rare condition and share experiences.

3rd of August 2017,my dear mum received shocking news that she likely had a rare disease called Pseudomyxoma Peritonei .Mum ,accompanied by my dad, had met with her local consultant to receive news regarding investigatory CT scan findings. Mum was informed by her local consultant CT images appeared to be 'highly unusual' and likely showed evidence of PMP.PMP a condition beyond the level of expertise of the local team, mum's case was immediately referred to a specialist Peritoneal Malignancy Centre/Basingstoke UK; hundreds of miles away from our local hospital. My mum and dad left the consultation in shock, they felt fearful and isolated. The following day, mum and dad decided to seek out help and support from local Cancer support organisations but faced rejection as mum had not received confirmation of diagnosis from the specialist team, the local support organisations had not heard of PMP/Jelly Belly; 'come back,get in touch when you know more and can explain what is you need help with' was the response.

3rd August 2017-the day of mum's consultation regarding her CT scan ,I was thousands of miles away from home, on holiday visiting a dear friend of mine .I phoned my mum in the morning to let her know I was thinking of her ,mum admitted to feeling a little bit nervous ,nervous because she had gallstones and thought it possible she would be informed the gallstones would require surgical removal. Mum assured me that overall she was feeling okay and would be in touch to let me know about the consultation. Later that day I received a text message from mum- my sense of worry increased, mum's preferred mode of communication is to make a phone call, the text so vague and made no direct reference to the consultation. I phoned mum, she answered and told me the consultant had referred her case to a different consultant so he was unable to offer much information.A few days later ,just prior to my flight departure I contacted my brother and asked after mum and dad,my brother told me mum had been informed that she could have condition called 'Jelly Belly' and that her local consultant had referred her case to Basingstoke-my heart sank ,I had no idea what Jelly Belly was but for this to be referred to a specialist team located hundreds of miles from home I could not help but worry. As soon as I arrived home, I looked up 'Jelly Belly' online-no surprise to see references to confectionary ,I proceeded to look up 'Jelly Belly medical condition'...cancer,not cancer...my head in a spin,I recall spending hours online, trying to grasp any information about the condition. Next day ,I visited mum and dad, they told me all they could about the brief meeting with the local consultant, mum confirmed Basingstoke had been mentioned and the term 'Jelly Belly'. Tears flowed when mum and dad began to talk of their experience of rejection they faced when they approached their local cancer support team ,not knowing who to turn to for information, help, support, we all felt a sense of isolation and fear.
Pseudomyxoma Survivor ,I can not recall exactly when I came across the website but it was before mum had met with her consultant at Basingstoke .I visited mum to let her know I had found a possible source of support, a charitable organisation, the website positive, informative...I asked mum is she would like to take a look at the website and get in touch with Pseudomyxoma Survivor -mum wanted some information but not too much so I asked mum if she would like me to act as 'editor'. By the end of August 2017 I was a member of the Pseudomyxoma Survivor Facebook Support group. Pseudomyxoma Survivor, above and beyond expectations. Pseudomyxoma Survivor offered a warm welcome, an introduction to a community of people across the globe all connected as a result of a rare disease. Pseudomyxoma Survivor,the folk running the charity and members of the FB group offered hope and support when needed in the most troubling of times .Mum met with the specialist consultant 27th September 2017 to be informed it likely she only had a few months to live ,the surgical team considered accepting mum to be a candidate for surgery as high risk ,mum filled with fear but no real 'choice' agreed to accept the offer of surgery. One full working week to make arrangements to return to Basingstoke from Scotland ,mum underwent cytoreductive surgery with HIPEC 10th October 2017.2020,nearing three years post surgery, mum is still with us and still making progress in terms of recovery, mum has defied many odds, since reaching out to Pseudomyxoma Survivor ,the charity has offered support every step of the way. My mum and my dad have never made direct contact with Pseudomyxoma Survivor but have felt supported by the charity through the support they have given to me, mum and dad have seen messages of support given by members of the FB group, simply to know that we have never travelled alone in this, to have messages of support form people from across the globe. My mum's journey, my mum's experience is now something that can offer hope to others too.

After having a very large ovarian cyst removed in June 2019, this led onto a scan which revealed a tumour in my appendix, this was removed in the January 2020, whilst it was being tested I found out it was being referred to Basingstoke Hospital to get a second opinion, during lockdown in May I found out by telephone consultation that it looked like PMP in my pelvis & I would need the big cytoreductive & HIPEC surgery. I was terrified, confused and finding it very difficult to cope. I joined pseudomyxoma survivor on Facebook & I felt welcomed, understood, people were so supportive offering their own experiences which proved invaluable to me, it was a great source of information and support. I had my operation on 3rd July which was a great success and I’m recovering well & looking forward to the future, thank you to this group for helping me through a very dark time x

June last year my husband Bill had is surgery in Basingstoke. He was there for five weeks. They were all amazing but I was losing hope at one stage and joined this group. Thank goodness I did - everyone gave me hope and helped me to remain positive. Can’t believe we are on holiday in Corfu enjoying life. Thank you all so much. Keep ������ strong and never give up x

I cannot begin to imagine how I would’ve got through the last 14 months without the support from Pseudomyxoma Survivor. Having been diagnosed in September 2019 I’ve had two major operations, hearing the stories of other members of the group made me realise that all is not lost and I can and will live through this. I can’t say thank you enough.

I cannot fault this charity, they have been an unbelievable source of information, support and kindness.

Being diagnosed with a rare cancer adds further stress and anxiety to an already difficult time. It was such a relief to find this charity early in my journey. They have me hope through the information and resources they provide and gave me huge support through the buddy system and members of the Facebook group. Through the ever growing skills of the expert surgeons I have a future I never imagined I’d get after my diagnosis.

An invaluable source of information and support for this rare disease. This charity works tirelessly to provide hope for patients and their families before, during and after treatment. The Facebook group is the go to resource to connect with those who have had first hand experience of pseudomyxoma.

After being diagnosed with Pseudomyxoma peritonei I found myself wondering what the future held. This charity has a face book group where patients and carers can exchange support on share experiences. It's great to see how people have overcome the obstacles and setbacks that come from any major diagnosis like this. I am looking forward to a day out with my family after a museum has donated tickets to the charity. Please support this worthy charity.

A small charity providing key information that you just don’t get with more Generic cancer charities .... a real asset helping many families in difficult times. Keep up the great work everyone!

A wonderful organisation offering support & invaluable information on such a rare form of cancer, of which little is known about to date.
They connect, help & give guidance to so many & they're all frankly just amazing!

Amazing organisation that has helped so many people. Invaluable information on the website. Well done to everyone involved.

Pseudomyxoma Peritonei is a rare illness, so most GPs know very little about it . That's how they helped my family most when my husband was diagnosed with it six years . They gave us masses of information and advice, directed us towards the best places for diagnosis and treatment within the UK. My husband very sadly died four years ago, but he had made so many contacts in Pseudomyxoma Survivor who helped him to understand what was happening. I wish them all the best in their work with cancer victims and survivors.

Excellent charity that I recommend to patients
Very supportive with great help and advise

Being a cancer patient with any type of cancer is scary. For me, having Pseudomyxoma Peritonei (aka PMP) and not being able to find a cancer charity that could help me on my journey because most charities don't include PMP in their list of cancers they help, was even scarier. I am very thankful that Pseudomyxoma Survivor charity exists because they helped me when I needed help. Without their help I wouldn't have been able to get the treatment I needed for my cancer. They are the one charity that would help me and it's because of their help that I was able to get the cancer treatment I needed to beat this cancer. I am single with limited income and I had to travel over 800 miles one way, alone, to get to a cancer specialist who knew how to treat my cancer. I had to undergo a radical and very dangerous 18 hour cancer operation, and then stay for months by that hospital to recover from my surgery. Then I had to return and make that 800 mile trip every six months to see my cancer doctors for checkups. The grant they gave me was a lifesaver. The Pseudomyxoma Survivor organization is a wonderful group of people. They helped me by providing me with a grant I needed to travel to get my cancer treatment and follow-up tests and have the money I needed to eat while i was there. Without their help I wouldn't have been able to receive the life saving medical care I so desperately needed for this horrible disease. Pseudomyxoma Survivor does a fantastic job of supporting patients and caretakers. The advice on their website has been invaluable to me, especially when I needed to find a Pseudomyxoma Peritonei Specialist who could handle the extensive cancer I had, as well as provide valuable information about this rare cancer that I had never heard of before. Because of Pseudomyxoma Survivor's help I am cancer free. Pseudomyxoma Survivor is a first class operation who goes above and beyond to help cancer patients and raise awareness of this cancer.

Amazing organisation. Very supportive of patients and family. Lots of very useful information on the website.

Excellent organisation. Very supportive of patients and family. Lots of valuable information to share ..

Psuedomyxoma Survivor has changed so many lives! My late husband was diagnosed with a form of PMP in late 2011 and it was heartbreaking. But having this community behind us made the fight that much easier. I support them to this day and even donate to thier cause because I know that every single family they care for is greatly and positively impacted by their care! I

This charity is amazing. It has provided so many people the understanding of this rare cancer that even many medics are not aware of. It supports those affected and their families in a multitude of ways from information, buddying and financial support to name just a few aspects. Anything needed by anyone associated with this rare cancer can be found through this charity.

An amazing charity supporting both individuals fighting against Pseudomyxoma and the families of those people.

It’s a charity ran by people who have first hand knowledge and experience of this cancer; who strive to make a difference to anyone on a similar journey.

This charity provides essential help and advice to those afflicted by this rare, rare cancer. A small organisation, it makes a big impact for those diagnosed with this type of cancer.

A brilliant charity working hard to support cancer sufferers.

This charity has helped bring together people from around the world who suffer an incredibly rare form of cancer and has given them the help, support and comfort of feeling like they are not going through this alone.

My sister Susan who battled this cancer for years and with the help of this charity overcome some of her struggles and is now supporting others with a similar journey

A great charity who has supported my daughter and made a difference to her life. Thank you.

When i was diagnosed with Pseudoyxoma Peritonei (PMP) i entered a world which i had no prior knowledge of and one which i very much struggled to understand. As a relatively rare disease (Around 1 to 10 people in a million) i found it very difficult to get any informtaion or help with what i was having to deal with. That is until i discovered Pseudomyxoma Survivor, they were massively supportive and i greatly benefited from a grant they had awarded me to provide some financial help. I am self employed and run my own small business and the fact that i had to take around a 1 year break while i was ill was very difficult and the grant i was given was very welcome at that time. I cant thank this organisation enough. They do an amazing job.

Without Pseudomyxoma Survivor I could not cope with this disease . It is like having a best friend who is always there for you .

Pseudomyxoma Survivor helped my family and I at a very difficult time. They provided both financial and emotional support and enabled us to be with my Mum when she needed us during her cancer treatment which took place away from our home city. We will always be grateful for this and I’m happy to say that Mum is recovering well.

When I was first diagnosed with pseudomyxoma peritonei (PMP), I wanted to keep it to myself. I thought that being involved with or meeting other patients would somehow take something away from being diagnosed with something so rare. How wrong could I be!
I have volunteered with the charity for a number of years now and it has given me a focus in my life during my recovery. At times it's challenging as no one really wants to do admin, do they? But it is really worth it to see the positive effect the charity has one people's lives.
I've regained my confidence in y own abilities and met so many lovely people who understand what I have been through. I hope I've made a difference in some of their lives as well. I've taken on challenges and learnt new skills and can honestly say it's been an amazing, fulfilling and life-changing experience.

Pseudomyxoma Survivor is a fantastic charity run by people who have been affected by Pseudomyxoma Peritonei. The charity has helped many patients and carers over the years by supporting them through their initial diagnosis, treatment and after care. The charity runs a buddy scheme whereby newly diagnosed patients can link up with someone who has previously been affected by the disease who can offer support and advice either by meeting face to face, over the phone or via e-mail, whichever suits the patient.
The charity also runs a closed Facebook page with over a thousand members who are able to ask questions, share experiences and offer support to others in the "Facebook family". Applications to join the group can be made via the Pseudomyxoma Survivor website.

This charity offer support for those diagnosed with a rare cancer of the appendix through an online group and a one-to-one buddy scheme. Everything the charity does is through the goodwill of all of its volunteers.
They raise awareness through attending conferences and meeting with other charities and organisations, advocating for rarer cancers at policy making level.
Pseudomyxoma Survivor also support and give funding to research to help find a cure for this awful disease. A great charity.

When my mother was diagnosed with Pseudomyxoma Peritonei it was sheer luck that a friend of mine had heard of this before. Her niece had not long been diagnosed and had the operation. We met with her niece and she told us all about these people in a charity which were so helpful.
So I found the charity through Facebook and then the wealth of knowledge on their website. It was such a relief to see so many people who had survived.
They have a public Facebook page, a private support group and a buddy system among other things. From those who initially started it to those who run it now, I couldn't be more thankful.
The help we receive is amazing and I am pleased to now be able to pay that back myself by helping others too.

Pseudomyxoma survivor have been an invaluable help to myself and my family. They have helped endlessly with support both emotional and financial when needed most.

The support I have had from this charity is second to none. To be diagnosed with a rare cancer at the age of 27 sent my mental health in to overdrive. It was the biggest sigh of relief to find the charity & be able to speak with other patients & survivors about their experiences and to be able to ask questions without judgement or fear of looking silly is fantastic. I don’t know how my journey would have progressed Without this amazing charity.