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Pseudomyxoma Survivor

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Nonprofit Overview

Mission: Pseudomyxoma Survivor is a patient and carer giver led charity for those affected by pseudomyxoma peritonei, appendix cancer and peritoneal surface malignancies. We provide support through our support group, buddy programme, grant scheme and through the information provided on our website. We also raise awareness of pseudomyxoma peritonei, which affects around 2 or 3 people per million each year, and support research.

Target demographics: those affected by the rare cancer, pseudomyxoma peritonei, and other appendix cancers

Direct beneficiaries per year: patients and their families with financial grants and prepared materials to raise awareness

Geographic areas served: many areas

Programs: our online support group, our buddy system for 1:1 support and by raising awareness of pseudomyxoma peritonei within the medical community, other nonprofit organisations and the wider public.

Community Stories

52 Stories from Volunteers, Donors & Supporters

3 Alice Blumberg R.

Client Served

Rating: 5

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!

Client Served

Rating: 5

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!

General Member of the Public

Rating: 5

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.

3 Jamie C.6

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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.

4 Kay S.2

Client Served

Rating: 5

I was diagnosed with appendix cancer in August 2020 after an initial misdiagnosis of ovarian cancer. I had two major surgeries , most recently MOAS with Hipec in November 2020, and the removal of most of my internal organs. I'd never heard of PMP
before this and Pseudomyxoma Survivor helped support me especially during lockdown when they put on zoom yoga, meditation and physiotherapy courses, and the online community had lots of advice. I'm now on 6 monthly scans and back running, but the practical support from Pseudomyxoma Survivor was invaluable in my recovery, for both my physical and mental health

3

Client Served

Rating: 5

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

4 Helen.T

General Member of the Public

Rating: 5

Hello everyone, my name is Helen I am 42 years young and received my diagnosis of PMP at Christmas time 2020. I work full time within the NHS and thought of myself as physically fit, never smoked, rarely drank, kept fit yet “yes” this still happened to me, Why? Is the question I ask myself daily and I don’t suppose I will ever know the answer to that other than it does not discriminate, there is no patterns to who this disease choses that I am aware of.


December 22nd, I had by appendix removed at my local hospital after months/years of just not feeling quite right. My symptoms were, lack of appetite however, still gaining weight especially around my abdomen area, change in bowel movements, fatigue, pain especially in my lower left side and lower back, pain when passing urine and blood in my urine. My GP surgery put this down to IBS and UTI’s and many courses of antibiotics were given until enough was enough and I demanded answers. Bloods were taken for tumour markers and an ultrasound and CT scan requested as well as an urgent referral to Gynae when my tumour marker came back elevated. Even at the gynae department specialists were still unsure as to what was wrong with me as nothing showed on the ultrasound, it was only potluck that a specialist who trained at the Christies and Basingstoke looked at my scan and stated my appendix just did not look right and offered to complete a laparoscopy to investigate. This is what happened on the 22nd of December where he removed my appendix and took some biopsies to send to pathology for testing. The next day the specialist rang me stating he was 99% sure this was PMP, but I would have to wait for confirmation. December 30th this was confirmed, and the referral was made to Christies Hospital in Manchester which is around 2.5hours from where I live.


I attended my consultation and pre-op at the Christies on the 4th March and had my surgery booked for 16th April where I had Cytoreductive surgery with Hipec. This was not without its complications, but I am here, I am home and still recovering however feel very lucky and blessed that I have been offered this surgery. I now await my first scan in October to see if it was a complete success so I will be keeping everything crossed.


This disease without a doubt takes over your life, it is on your mind every single day. At the beginning I thought that was it for me the big “C” word just made me think my time was up. However, my mindset has changed, I feel lucky to wake up every day and have that time with my 2 young daughters and husband who this has been particularly hard on. I am fortunate that I found Pseudomyxoma Survivor page which has been a huge support and comfort when I have been in some very dark places. I was also lucky to receive the grant from the group which helped enormously with costs of travel and the expenses of having to have time off work, it was just something that helped alleviate that pressure of money worries which shouldn’t be a priority in these times, but it is a worry. I also joined a few of the group chat sessions on a Thursday evening which was nice to be able to put faces to names from the group and just to chat, yes about PMP but also just about life and our loves and passions as life really can still go on beyond this horrible disease. I have met some great friends through this group, and I am always happy to chat to anyone and share information or just be someone to listen to you if I can ever help anyone please get in touch.


If you are reading this and going through the same issues or have a loved one or family member who is, then know that this group is awesome and there is always someone here to support you and offer advice should you need any.

First picture is me and my lovely family on a day out in Whitby this was July, slow and steady but walking for me is the thing that has helped my recovery massively. I walk every day especially with my furbaby Milo who never leaves my side.

Second picture is also July me and my husband celebrating out 19th wedding anniversary.

Third picture is me in Christies hospital about 4-5 days after my operation, looking wonderful haha

1

Volunteer

Rating: 5

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!

2 Adrian E.

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 08/06/2021

Thank you so much for your support

1 Emilie.Bea

Client Served

Rating: 5

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

1

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 09/21/2020

Thank you, milly2020, can't wait to see the holiday photos. So glad to read you've been able to have this break, have fun!

2 Danielle S.5

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/20/2020

Having one operation in a year is tough, having two is almost unbelievably so but we have a community who just 'gets it'. We're so pleased to have helped. The team at Pseudomyxoma Survivor

2

Client Served

Rating: 5

Amazing, supportive group. Without this group I don’t know where I would have been. Linked me up with a buddy, who has been invaluable. Also provided me with a grant due to being unable to work at present. Cannot thank this charity enough.

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Pseudomyxoma Survivor 09/19/2020

Thank you louise1982, glad that we have been able to help you in the ways that we can.

2

Client Served

Rating: 5

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

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Pseudomyxoma Survivor 09/19/2020

Thank you for your kind words, ljoyce!

1 Jo F.1

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/19/2020

Jo F.1, you've summed it up, being diagnosed with a rare cancer does add anxiety and stress - and we know that as we are predominantly patients ourselves which we feel is one of our great strengths. Thank you for your comments.

2

General Member of the Public

Rating: 5

Pseudomyxoma Survivor were a huge support to me when I was initially diagnosed with PMP cancer and underwent Cytoreductive Surgery with HIPEC in 2017.

I was a recipient of their financial grant which helped alleviate some of the stress caused by being in a situation where my income had reduced, due to being unable to work, but my outgoings had increased, due to costs involved with my treatment. In addition, the information and advice received was invaluable.

Special thanks to Angela for all the advice, which was gratefully received and will not be forgotten.

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Pseudomyxoma Survivor 09/19/2020

Thank you, ShamrockThistle. We're so pleased we've been able to help.

3

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 09/19/2020

Thank you, chrisramsbottom. We know where we turn for help as patients and it's the very same group.

2 Sarah D.15

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/19/2020

Ah, Sarah D.15, so glad that we've been able to help and hope that you and your family can take that trip soon.

4

General Member of the Public

Rating: 5

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!

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Pseudomyxoma Survivor 11/03/2019

Thank you!

4 Catherine B.3

General Member of the Public

Rating: 5

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!

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Pseudomyxoma Survivor 09/18/2019

Thank you for your kind comments, Catherine.

4

General Member of the Public

Rating: 5

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

4 Ruth H.2

General Member of the Public

Rating: 5

Brilliant supportive chatity for survivors and family of those affected by this cancer. I found the website very informative and helpful.
Brilliant work by the volunteers and staff

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Pseudomyxoma Survivor 09/18/2019

Thank you for your appreciation, Ruth.

6

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you, Kathryn. We were all saddened by the loss of your husband. He is sorely missed.

5

Client Served

Rating: 5

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

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Pseudomyxoma Survivor 09/19/2020

Thank you, emilym666

5

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you, ReneeBW, we're very pleased to have been able to help!

5

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 09/18/2019

Thank you, elms. We hope the website helped you.

5

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 09/18/2019

Thank you, jennypenny.

5 Alyssa G.1

Client Served

Rating: 5

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

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Pseudomyxoma Survivor 09/18/2019

Thank you Allyssa, we are very pleased to have your continued support.

5 Carriane B.

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thanks, Carriane!

4 Honor K.

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 09/19/2020

Thank you, Honor K.!

5 Elizabeth C.5

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you, Elizabeth, your support is much appreciated.

5 Kirsty S.2

General Member of the Public

Rating: 5

A brilliant charity working hard to support cancer sufferers.

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Pseudomyxoma Survivor 09/18/2019

Thank you, Kirtsy

7 Colin M.

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 09/19/2020

Thank you, Colin, for your comments.

6

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 09/18/2019

That you, rachy, we're very glad to have been able to help your daughter.

7

Client Served

Rating: 5

My cancer diagnosis only happened because My daughter was born via emergency c section. She literally saved my life!
However, this also means my annual scan is around her birthday. I applied for the grant to take my daughter to Peppa Pig world for her birthday so as to try and make sure we celebrate her and how special she is to us.
Thanks to the pump survivor grant this was able to happen. Something that we certainly couldn't justify financially otherwise. I have attached a few photos of my daughter, husband and myself enjoying our amazing break away!

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Pseudomyxoma Survivor 09/03/2019

We're so privileged to be able to help!

7

General Member of the Public

Rating: 5

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.

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Pseudomyxoma Survivor 09/03/2019

A diagnosis such as PMP can have a dramatic effect on people, especially if you're self-employed. We're grateful that we we able to award a grant to help tide you over.

6 Suzanne E.1

Client Served

Rating: 5

Diagnosed with PMP in 2016, fortunately I'm NED at the moment (long may it continue)
The support from this charity is amazing, and knowing your not on your own is priceless!!!!
Thank you ❤️

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Pseudomyxoma Survivor 08/17/2019

Thank you for your lovely words, Suzanne. We hope that your NED status continues as well!

5 Susan S.10

General Member of the Public

Rating: 5

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

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Pseudomyxoma Survivor 10/30/2018

Thank you, Susan, glad we could help

7 Lynsey Y.

Client Served

Rating: 5

I was diagnosed with Pseudomyxoma in October 2017. I had never heard of this type of cancer before and couldn't even pronounce it to begin with.
All I knew about it after getting my results was that it was a rare type, the doctor "wouldn't wish this on anyone" and that treatment would either be in Basingstoke or Manchester.
It was a time of worry and uncertainty as to what this diagnosis would mean... I did a lot of googling!
I was lucky enough to be put in touch with another PMP sufferer who is now a good friend. I was able to get an insight in to what was to come. After meeting she added me to the Pseudomyxoma Survivor group.
This group not only provided support and reassurance to myself but also to my family too. We were able to learn about other people's experiences and what was ahead of us.
My four week stay in hospital was difficult for me but the messages of support, kindness and delivery of balloons to the ward from the group really helped.
There is always someone there who understands after going through it to give help and advice at any point along the way. I have made many friends through this.
Pseudomyxoma survivor is a very special group.

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Pseudomyxoma Survivor 09/18/2019

Thank you for your kind comment, Lynsey!

4 Margaret B.3

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you Margaret and we're pleased that your mum is recovering well.

7 Stacey B.1

Client Served

Rating: 5

In May 2018 I was diagnosed with Pseudomyxoma Peritonei, which is a very rare form of cancer affecting around two people per million each year!
Whilst I was waiting for treatments / information from my health care team, I took great comfort In finding support and information from Pseudomyxoma Survivor. I was able to learn more about the disease and understand what was going on in my body. This helped me mentally prepare for what I was about to face.
I also found friends via the support network-who I was able to ask advice, seek answers and also act as a friend for them and others.
During my treatment and aftercare, the team were extremely supportive and remained in contact about how my treatment went. The best thing for me was when I received an amazing box of balloons from the charity. This made my day and I was so grateful and amazed to have received them.
I continue to support the charity and use the networks I’ve made to seek support both for myself and also my new friends which have been made from the charity.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

7

General Member of the Public

Rating: 5

They helped me understand the heartbreaking disease my friend was going through. And after my friend passed away this year they were amazing when I got in touch to raise money for them, offering support to me and my friends family. We need more charities like this.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

11 Ripley M.

Volunteer

Rating: 5

I survived surgery (and an extremely close call in the week following) with only the unwavering support of my husband, a world class medical team plus a work colleague on the other end of the phone. As a strongly independent person, I managed well, although I do marvel at those who had family around.

After a few months, that tunnel vision focus of getting through surgery and recovery in order to get back to the ‘normal life’ I’d previously known had almost become reality. This was when things went abit awry. I’ve heard others say that you get so caught up in not dying that you forget how to live. The usual routine I’d fought so hard to return to just didn’t seem enough anymore. I didn’t fit into work, which had been my family and my comfort zone before the Pseudomyxoma Peritonei diagnosis. I felt isolated and frustrated as it was rare anyone understood anything of what I’d been through, partly because PMP was unheard of. To be honest, that’s still the case 2 years later. The treatment remains virtually on the fringes of medical science.

Whereas the surgery fixed my body, joining Pseudomyxoma Survivor saved my sanity. My first question was the biggie – ’What is my life expectancy having been through this?’ Even then, I was too scared to ask outright but my email was answered quickly by one of the Admins and just having someone who heard me and was able to allow me into the larger space of the Facebook Forum felt like a lifeline. Finding a home to voice the big things (and the little every day things) we go through and being able to share, safe in the knowledge you can rant, find humour in a dark situation or ask what you think might be a daft question - and that there’s someone who ‘gets it’ - is a huge part of finding your way post diagnosis and post treatment. When your family don’t want to talk and when the rest of the world feels you should have moved on, my fellow Survivors understand and are there 24/7.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

6 Sam B.3

Donor

Rating: 5

I had never heard of PMP when I was diagnosed after a CT scan, even though I had been a radiographer for 30 years. The first thing I did was Google at work, cancer research came up! I was scared and shocked. I had to get through the rest of the day!
As soon as I got home I googled again, and found this amazing site. I could read about what I had and what to expect. The most amazing thing has been the Facebook group. To be able to ask questions to people who had been through treatment was invaluable. To also be able to support others and encourage positivity has been great. I've met some great people, in person and online. The day Stacey and I were discharged from ward 10 at the Christie Hospital we asked someone to take our photo

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Pseudomyxoma Survivor 09/18/2019

Thank you!

7 DramaticAngel

Volunteer

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

5

Volunteer

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

5 JellyBelly1

Volunteer

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

6

Volunteer

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you for your support.

6

Volunteer

Rating: 5

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.

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Pseudomyxoma Survivor 09/18/2019

Thank you!

6

Client Served

Rating: 5

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.

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Pseudomyxoma Survivor 10/12/2018

We're very pleased to have been able to help.