Sarcoma UK‘s Annual report arrived in this post this morning with a little note “.. you may recognise a certain person inside :-)…”
Well there I am! Taken at the Sarcoma UK’s Big Conversation Day last year.My quote “Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. …” remains absolutely true for many today.
Sarcoma is rare. Divide ‘Sarcoma’ into types – soft tissue and bone. Then divide further into the different sub-types. Each sub-type is different with it’s own surgical regimen and treatment plan.
Now try and find others who understand what you’ve been diagnosed with!
(This doesn’t just apply to cancer or sarcoma. There are some very special/rare/unique diseases of other kinds that also must fear the unknown and isolation when diagnosed).
Fortunately with people having more access to the internet and feeling more confident to use it for support, this has meant a far further reach for support. Certainly I’m not sure how I would have coped had it not been for our wonderful Facebook Phyllodes Support Group members. For all the criticism about social media and all that is wrong with it, there is an enormous amount that’s right.
For those fortunate enough to be able to travel or live near a physical support group – Sarcoma UK run a number of support groups up and down the country as well as online forums. More information can be found here