When you are first diganosed with kidney cancer your world stands still and it can take quite a while to come to terms with it. Maybe even moreso than some other cancers because its rare and you can often feel isolated and alone - I know thats how I felt for a long time. It was ages before I met a fellow patient. The NICE demonstration was quite a relevation to me - for here were dozens of them gathered from all over the country ! It was an incredible feeling being able to chat to someone, lots of people in fact, who knew EXACTLY what you were going through. I think I speak for everyone when I say we all gathered such strength from that meeting.
This is why the internet is such a powerful tool - it enables us to make contact with others in the same position, to ask the kind of questions that dont get answered at hospital, to actually 'speak' to someone who has been through a particular course of treatment or had the same symptoms. Support from other patients is SO important - and so is support for carers who are often overlooked.
Until now the network on the internet has been a bit hit and miss with no one site really providing what patients and carers want or need. Now, thanks to the incredibly hard work of two patients and fellow campaigners, Rose and Andy, we have our own support network which will cover the whole of the UK. So ladies and gentlemen I give you....
http://www.kidneycancersupportnetwork.co.uk/
Everyone is welcome - I would particularly like to invite my American and Canadian friends to join so we can learn from your experiences.
This is our network, our forum and it will only be as good as we make it. So lets make it the best.
A BIG thankyou to Rose and Andy for making this possible.
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7 comments:
Thanks so much for this Jane, really really appreciate it!
Andy
support is always good...makes you feel that you are not alone...
Will relay, excellent work
Excellent writing Jane. If I may, I would like to add you to the links on my blog.
You're very encouraging and inspirational. Keep up the good work!
i know our MS society does a good job,and we have several forums to get in touch with each other,so im so pleased you have a similar thing for you.take care jane lots of love mort xx
What a wonderful idea Jane. I do hope that it will be well read and publicised..If only it could be advertised in hospitals etc. that woule be so good.
I remember many many years ago when the Scotish Spina Bifida Ass. started (beofre blogs etc !!) we tried to get hospitals to tell parents about us so that we could give info and help from the "grass roots" but do you think they would..oh no we might be treading on their toes after all they knew eveything.. Thankfully things are better now....Anyway Good Luck.
ut don't forget us all here !!
Much Love Sybil xx
Just read your post and WOW!!!....truly amazing how something bad can suddenly turn into something so good when there are people like you to lead the way. This website will provide so much information and support to other cancer patients. Great job and I for one from Canada, will definitely be checking it out regularly.
This information highway is vital when you have cancer and together we can all learn about what is out there, what works, etc. from each other!!!
Take care of yourself!
Deb
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