News

Keep in touch with what is going on at Pseudomyxoma Survivor.

Trustees Week 12th November

Here at Pseudomyxoma Survivor, we’re supporting Trustees Week, running from 12th-19th November, showcasing the work trustees do and highlighting opportunities for you to get involved and make a difference. We’ll be looking at different aspects of being a trustee and we’ve asked our trustees to share their thoughts on being a trustee.

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Mr Omer Aziz

Mr Aziz is consultant colorectal surgeon at The Christie, one of Europe’s largest comprehensive cancer hospitals. At The Colorectal & Peritoneal Oncology Centre (CPOC), he specialises in complex minimally invasive (keyhole) and open surgical techniques to treat early, advanced, and recurrent tumours of the appendix, colon, rectum, and anus, including those that have spread to the lining of the abdomen (peritoneum), for which he performs cytoreductive surgery (CRS) with hyperthermic intra-peritoneal chemotherapy (HIPEC). He is also a member of the medical advisory board for Pseudomyxoma Survivor.

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Thank you

We are very privileged to be able to make family grants and it is thanks to the hard work of our fundraisers and donors that we have been able to do so.

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West Yorkshire & Harrogate Cancer Alliance

I am finally getting round to informing you all of my recent visit to West Yorkshire & Harrogate Cancer Alliance. We were invited by Cancer 52 and the meeting was a great and informative one.

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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:

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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.

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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

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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.

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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. 

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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...

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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

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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....

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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.

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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.

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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...

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Dr Emel Canbay

Dr Emel Canbay is Professor and Head of Department of Surgery at Biruni University Hospital.

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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…

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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……..

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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?

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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.

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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.

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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.

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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.

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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

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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.

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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!

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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.

🌲🎅🎄 We are getting our Christmas card orders out as soon as possible. For other orders, we are currently posting no more than once a week due to volunteer availability. Thank you 🎄🎅🌲 Dismiss