NewsKeep in touch with what is going on at Pseudomyxoma Survivor.
Susan's representing Pseudomyxoma Survivor at the EURORDIS - European Rare Diseases Organisation General Assembly this week.read more
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 you!read more
Dr Emel Canbay is Professor and Head of Department of Surgery at Biruni University Hospital.read more
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
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
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
I was really positive about my recovery after the major operation for pseudomyxoma peritonei (PMP). I took things really slowly and took good care of myself.read more
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.
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….read more
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
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
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 xxxread more
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
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
Calling all budding artists – our Christmas Card Competition 2017 is launched!read more
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.read more
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
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
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.read more
Cancer52 is an alliance of 90 organisations, within the UK, working to address inequality and improve outcomes for patients with highly challenging disease, such as pseudomyxoma peritonei (PMP). 52 percent of UK cancer deaths have been determined to be from the less common cancers (although recent statistics show a likely increase to 54%).read more
Have we told you about Audrey the PMP Unicorn? As you know, pseudomyxoma peritonei (PMP) is a rare disease and unicorns are extremely rare. Audrey is travelling around the PMP community sharing pictures of her travels, raising awareness and some money in aid of Pseudomxyoma Survivor as she goes.read more
My 10-year-old son has recently been to pioneer week where he goes to his new secondary school for a week to experience life there. He was asked to write about someone who inspires them.read more
As patients, we want to be as best informed as possible. Here are some of the most commonly encountered medical prefixes and postfixes, from Rasmussen Collegeread more
With increasingly limited Government resources (and the impact within the UK of Brexit), we must all be aware that healthcare may not continue to be a national priority in each of our own countries, this is really worrying for rarer diseases like ours as we could be pushed further and further down the priority list.read more
Initially, I had flu-like symptoms with pain in all the joints in my body followed by bad abdominal pain that did not go away. I was admitted to Gosford Hospital on February 11th, 2014 as they couldn’t diagnose what was causing the severe discomfort I was having. After being in hospital for eight days, it was discovered that I had pseudomyxoma peritonei (PMP).read more
Pseudomyxoma Survivor is supporting Rare Disease UK’s Pledge for Patients in the run-up to the UK General Elections. Are you?read more
Join the nearly 2,000 people that voiced their opinions about the use of complementary & alternative therapies in the management of rare diseases by responding to this short #RareBarometer survey. By taking part, you will be contributing to the report for pseudomyxoma peritonei.read more
Dawn was someone who everyone thought they knew – cancer ambassador, selfie queen – but to us, the two people who really knew her, she was simply Mum.read more
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot and raising awareness of pseudomyxoma peritonei.read more
My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.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.
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.