So why does Kylie experience euphoria and I don't? Why am I not jumping up and down with plans for a cancer free rest of my life? Well its simple really - Cowden's Syndrome. I have it, she doesn't...well as far as I know anyway. That means I am not jinxing myself with any expressions of delight.
Any member of my online support group (@ Life with Cowdens), will back me up in saying that this condition is literally and physically a pain in the butt and is ALWAYS THERE!You never, ever get a break from it. Even while the F.E.D was in hospital recently, I was off having tests and scans for yet another lump one of my doctors wanted to check up on. Since then while everybody has been busy planning Christmas and New Year, I have been busy filling out paperwork for a short hospital stay. Thanks Santa but I said a hotel you dumb ass not a hospital!!!
So getting back to Kylie for a minute. I don't begrudge her euphoria one bit because she has used her high profile to spread the message of breast cancer care. She has encouraged women to trust their gut feeling and keep persisting at the doctors if they feel something is wrong. Thats what I did so I know its a good message. Women are clever - they know when there's something wrong. And don't for a moment think men don't get breast cancer. The other week waiting for the F.E.D to come out of theatre, a middle age man approached the breast cancer clinic counter, to quietly make a review appointment. He looked sadly out of place but still very much in need regardless.
I thought I would share some of the comments people gave me on my five year anniversary. If you recognise your comment I will allow you to slap me later for the replies in brackets.
- Yay for you (yes ra ra its been fun, yay for me).
- It must feel fantastic ( the date or the fake boobs? Hope its the date cos the boobs feel anything but fantastic especially in this heat).
- I will celebrate on your behalf ( knock yourself out. I am partial to a nice red or a Jim Beam on my bogan days).
- Be excited about what the next five years will bring. (she means well so no comment).
- Celebrate and then move on, its over now. ( Its never over - ask Kylie).
- Keep being positive. ( sorry am I not happy enough for you?What do I have to do -take out a billboard ad?)
- Go and buy what you like. ( I love my husband)
Hi Suzannah, could you please tell me if there are any active cowden's syndrome groups that you know of? I am having a bit of trouble finding any of the groups where people actually talk to eachother. Thanks!
ReplyDeleteHi Kathleen , I belong to a number of groups which are organised on Facebook.
DeleteLife with Cowden's
Cowdens Syndrome
Cowden syndrome
I am in Australia and am admin for a 4th group, Cowden's syndrome Australia. This last group is for Australians only.
If you have any other questions or problems contact me on taylorsuzannah@hotmail.com and I will do my best to help you.
Regards Suzannah x
Thank you so much!
ReplyDelete