John and I attended a Sarcoma Patient Support Group Meeting last night at the Roy Castle Lung Cancer Foundation in Liverpool. The group has been set up by Patients, Sarcoma Nurses and Macmillan, and provides an informal environment where patients, carers and family members can meet other people who have or are suffering from this illness. (There is also tea and cake!!)

How Rare?
In the room there were ten people, all different ages, who have had sarcoma at some point in their lives. Each and every one of us had a different kind of sarcoma, all in different parts of the body, which really highlighted the rarity and diversity of this form of cancer.  There are approximately 3000 people diagnosed with 72 different kinds of sarcoma each year – that’s only 41.6 people per type of sarcoma!

Buddy Scheme?
Rob, the Chairman of the group, is working with Macmillan to understand the feasibility of running a ‘Buddy Scheme’ for sarcoma patients.  A Buddy would be someone who has been disease free for 3 years plus and they would be there as a source of support for newly diagnosed people.  I really think that this would be a wonderful thing as it is extremely difficult to speak to people about your diagnosis when you have something so rare, and you are just as confused and scared as your family.  When I was diagnosed I just wanted to speak to someone who had the same illness but it was impossible to do as it just isn’t as common as other cancers/illnesses.

I left the meeting on a positive note.  It is extremely hard to remain positive when you are in the throes of treatment and you have another x-ray coming up, but seeing other people, who have SURVIVED this, who are POSITIVE, and who are there to SUPPORT me really helped me mentally. I am less nervous about my x-ray and am back on the UP!

P.S

Team Mcclozzer
John has been approached by The Clatterbridge Cancer Charity to ask if they can do a press release on The Teams fundraising efforts!! Watch this space!