It seems as with most other pressing issues that the South West is lacking a support group for Sarcoma patients and carers.
My consultant came to me the other day after meeting with people from the Sarcoma UK South Support group and asked if I would be interested in setting one up.
Under the umbrella of Sarcoma UK there are many resources available to us but, having an opportunity to meet with others close by could be a great help to all.
If you are a sarcoma sufferer in the South West please let me know what kind of format you'd like to see, any topics you'd like to discuss, who you'd like to see attend (consultants, oncologists etc.) and any other bright ideas.
Even if you feel you wouldn't be interested in attending meetings you're ideas would still be welcomed and I promise I won't hound anyone to attend.
Cheers, Dave
FormerMember
Hi Dave
My name is julie and yes you are right their are not many of us with sarcoma, i had a utrine leiomyosarcoma in nov 06.
Where were you treated? i was treated at christies manchester but i live in stoke. Have you joined the sarcoma uk website it is run by Roger Wilson and a lady called Shirley Collings i am sure you will find someone on their that has the same type of cancer as you.
You're right the Sarcoma UK website and team are fantastic. I've recently subscribed to their mailing list and will soon post a similar message to that. The website and newsletters I have really found helpful.
I was diagnosed with a Pleomorphic rhabdomyosarcoma in my left thigh in September of this year.
I had surgery at Derriford Hospital in Plymouth and am currently undergoing radiotherapy at the same.
I just think it will be nice if sarcoma sufferers in Devon, Cornwall, Somerset and maybe as far as Bristol had a group they could physically attend.
You say you're in Stoke, do you have a local support group that you attend, if so I'd love to get in touch with the person who organises it.
gald you are feeling a bit better, with regards to your question no their are no sarcoma support groups in my area all the information i have is what i have found out from the internet eg sarcoma uk and the american site. Shirley collings was very helpful.
My oncoligist had never seen what i have had before thats why i was referred to christies, i wish their was someone around here that i could talk to. Like i have always said to my husband i told him i was special lol. I have been all clear now for 2 years (god next week) carnt beleive its gone that quick next appointment with onc is 17th december i only go every 6 months now. I think the best person to ask about setting up your support group would be Shirley she will point you in the right direction as to what you need to be doing.
Just found this by accident as I was looking up lung cancer as my dad has been diagnosed. I came down to Derriford and gave the talk as myself and some other set up the south group.
We found with our group that the local macmillan nurses and development people were the best help. I'll forward this on to the person who was the driving force in our area too as she may be able to help. We have a constitution that you can copy / adapt too as it is really useful for getting a Macmillan grant.
Roger Wilson is probably the best person to speak too, Shirley isn't well at the moment and isn't on the sarcoma uk forum at the moment. Also Katherine on the sarcoma uk forum as she has helped set up on in Leciester.
Anyway must go - totally shattered and work tomorrow.
