News
Keep in touch with what is going on at Pseudomyxoma Survivor
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....
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.
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 with pseudomyxoma peritonei or PMP.
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).
Peritoneal 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...
Eurordis General Assembly 2018
Susan's representing Pseudomyxoma Survivor at the EURORDIS - European Rare Diseases Organisation General Assembly this week.
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 you!
Dr Emel Canbay
Dr Emel Canbay is Professor and Head of Department of Surgery at Biruni University Hospital.
I was misdiagnosed by my first surgical oncologist
The recommendations from the people in the support group are because they care. The decisions we make are literally life and death.
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……..
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?
Jill’s Book Review
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.
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….
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.
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.
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
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.
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!
Even if your case is rare, do not give up…
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
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.
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.
When you’re faced with life and death, you choose life
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.
Feeling proud
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.
Not just for aspiring doctors and nurses…
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 College
I had flu-like symptoms and was diagnosed with PMP
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.
Pledge for Patients
Pseudomyxoma Survivor is supporting Rare Disease UK’s Pledge for Patients in the run-up to the UK General Elections. Are you?
Remembering Mum
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.
Lisa takes part in a photoshoot
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.
I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!
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.
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.