News
Keep in touch with what is going on at Pseudomyxoma Survivor.
Virgin Money London Marathon 2019
How exciting! Pseudomyxoma Survivor is privileged to have been awarded just one Silver Bond place and we are giving you the chance to take part in our ballot to win this place for the race on April 28th 2019. Whether you missed out on the ballot or have decided to run for a charity, this is your chance for a space in this amazing race.
All you have to do is email hello@pseudomyxomasurvivor.org by midnight on Friday, 19th October and tell us the following:
read more
Professor Norman Carr
Currently, the Director of Research and Consultant Histopathologist at the Peritoneal Malignancy Institute in Basingstoke, Professor Carr is a leading expert in the complex pathology of pseudomyxoma peritonei (PMP). He has published over 70 papers in the peer-reviewed literature and written two textbooks for undergraduate medical students as well as several book chapters. He contributed to the 3rd and 4th editions of the World Health Organization Classification of Tumours of the Digestive System and is presently working on the 5th edition.
read more
I’ve gone from 0km to 10km in just over 6 months!
To thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x
read more
Multi-disciplinary Diagnostic Centres
Through Cancer 52, Pseudomyxoma Survivor has received a special invitation to view a multi-disciplinary diagnostic centre (MDC) in action. MDCs are being trialled here in the UK and they are set up so that patients who present with non-specific symptoms can go to a one-stop shop and have all of the tests they require to help with a diagnosis.
read more
An evidence-based approach
The BMJ defines evidence-based medicine as:
“the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients”
It’s a constantly evolving definition and at Pseudomyxoma Survivor, we always look for scientific evidence to back up suggested treatment plans for pseudomyxoma peritonei (PMP) and appendix cancer patients.
read more
Gearing up for PSOGI 2018
The PERITONEAL SURFACE ONCOLOGY GROUP INTERNATIONAL conference (PSOGI2018), now in its 11th year, is almost upon us. I can't quite believe it's been two years since we attended the one in Washington DC! PSOGI is a non-profit organisation which aims to...
read more
We need your stamps!
You can now donate your used stamps to raise much-needed funds for Pseudomyxoma Survivor. All kinds of stamps are welcome, on or off the paper.
Simply cut or carefully rip the postage stamp from the used envelope, being careful that you don’t damage the stamp, and once you have a collection pop them in an envelope
read more
Update from our Chair
Following on from the two successful patient days held at Basingstoke Hospital and The Christie, I have been busy attending meetings with Cancer52, Eurordis, National Voices and I secured a bursary place at the Public Health England Conference in Manchester in June....
read more
Cancer-associated thrombosis (CAT) survey
Can you help build a better understanding of patient awareness about thrombosis? New patient survey launched across Europe (including the UK).
People with cancer have a higher than normal risk of developing a blood clot – a condition known as cancer-associated thrombosis (CAT). Yet it remains under-reported, seldom discussed and often misdiagnosed.
read more
The disease was actually growing out of my belly button!
I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis.
read more
Supporting The Christie Colorectal & Peritoneal Oncology Centre Prehabilitation program
We’re very happy that we can support The Christie Colorectal & Peritoneal Oncology Centre Prehabilitation programme as a result of your fundraising and donations. This program will be looking at the use of wearable devices to get patients ‘fit for surgery’ before cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (CRS/HIPEC).
read morePeritoneal Tumour Patient Day at The Christie 2018
Huge thanks to everyone who came to speak to us at our table at the Peritoneal Tumour Patient Day at The Christie yesterday. It was lovely to see some old friends and to make lots of new ones. We were overwhelmed by the donations the charity received and so busy that...
read moreEurordis General Assembly 2018
Susan's representing Pseudomyxoma Survivor at the EURORDIS - European Rare Diseases Organisation General Assembly this...
read more
Supporting the Peritoneal Malignancy Institute in Basingstoke
We got the day off to a great start at the Patients Wellbeing Day in Basingstoke by making a donation to the Peritoneal Malignancy Institute. This donation was made specifically with the help of the Leighton family and friends. Thank...
read more
Dr Emel Canbay
Dr Emel Canbay is Professor and Head of Department of Surgery at Biruni University Hospital.
read more
I was misdiagnosed by my first surgical oncologist
When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…
read more
MOAS – It’s not a race
Take your time, there’s no rush, go at your own pace and don’t feel pressured to be at a certain stage, just because someone else is. You’ll get there, in your own time, be happy still to be breathing and above ground……..
read more
Rare Disease Day 2018
Those of us affected by pseudomyxoma peritonei and appendix cancer are amongst the millions of people affected by rare diseases around the world. As a community, we face huge challenges each and every day. Can you imagine going to multiple doctors who cannot diagnose your condition? Or being told that you aren’t a candidate for the gold standard of treatment for your disease? Or realising available treatment is too expensive? Or finding out that there are no surgeons in your country that can treat you?
read more
Jill’s Book Review
I was really positive about my recovery after the major operation. I took things really slowly and took good care of myself.
read more
Why you should see a PMP specialist
I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.
They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.
This Illness Sucks but I’m Embracing the Moment
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
read more
MP backs group work on cancer
Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52. Based on current data, 46 percent of cancers diagnosed are rare and less common, yet they account for 54 percent of cancer deaths.
read more
You have to do research to find the right medical team that is experienced in treating PMP
I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.
read more
Golden Wedding Celebrations
When Floss and Alan were celebrating their Golden Wedding Anniversary recently, they want to give something back for the support their daughter has received from the charity. Instead of gifts, they asked their friends and family to make a donation and have raised over £500 in aid of Pseudomyxoma Survivor!
Thank you, Floss and Alan and congratulations! The cake looks amazing xxx
read more
The Newcastle Rare Disease Showcase
Most of the talks were interesting and, despite being very specific to particular diseases, there were positive messages that could be applied across the board of rare diseases. What draws us together is the human aspect; the isolation, the struggle for recognition (especially with invisible diseases), the importance of support from loved ones and the belief that we can still be the best we can be despite a disease.
read more
Findacure Rare Disease Showcase, Cambridge
The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor. My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!
read more
Christmas Card Competition 2017
Calling all budding artists – our Christmas Card Competition 2017 is launched!
read more
Even if your case is rare, do not give up…
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
read more
I was diagnosed with an inflamed appendix
Before I was diagnosed, I experienced increased abdominal size and piercing pain which was diagnosed initially with an inflamed appendix. It took about four months and another doctor for me to get the correct diagnosis at the end of January 2014.
read more
The Yorkshire Yaks set off!
You may have seen posts on our Facebook page from the Yorkshire Yaks and wondered about the association with Pseudomyxoma Survivor.
Adam is quite simply one of the most amazing people we know – you might have seen his story in the newspapers or on tv recently.
read more
Authors posting articles on our blog are patients and family caregivers who write their articles with the goal of sharing their experiences fellow patients and their families.
As survivors and carers, information here is from our perspective – we are not health care professionals. We are all individuals, everyone is different. We recommend that you take advice from your doctors for specific information.
Feeling inspired?
We hope our blog has inspired you and perhaps you have a story to share – let us know if it has. You can leave a comment on a story or you can contact us with yours.