Lot of interesting emails this morning from the American leiomyosarcoma group, who are, in my view, leading the way on getting recognition and meaningful research into this pesky disease, and they are all unpaid and fighting the b*****d thing themselves. There were lots of statistics about survival rates which don't make comfortable reading and are mighty confusing for a person like me who took three goes to get maths O Level and then only got a Grade 6; mind you my teacher was Miss Jacob and believe you me leiomyosarcoma is marginally preferable to a lesson from her.
I think the very best statistical twist I can put on things is that - with my type of leio, ie one of the worst, and the length of gap between primary discovery (even though that was at least 14 months late thanks to very poor doctoring) and secondaries emerging, not good in my case - my chances of surviving for five years are about 2%, not the best odds! I read other articles which suggest that if you have aggressive surgery, which I have, your chances, if you are vaguely like me, go up to 18% but my doctors say otherwise. The chemo I will start tomorrow, if the bed stats are in my favour, will only have about a 20% chance of working and that is not for a cure but for giving me a few more years.
You may all be getting very depressed by now and I am sorry, but Pollyanna here would like to point out that I only had about a 5 in 6.6 billion chance of getting this thing, where I got it, in the first place; aren't I the lucky one! I have a daughter who was conceived while I was on the pill and breast-feeding; and Stewart had a very bad back that month which restricted conceiving opportunities down to one in 30 if you get my drift. Miss Jacob didn't terrify enough skills into me to work out the odds there but they are teeny weeny. Finally the other day in Maumont the weather forecast said we had a 20% chance of snow and we got the worst fall in decades and were snowed in for days; down in the valley they were basking in winter sunshine.
So I know my chances of seeing 2015 and beyond are probably less than winning the lottery, a lot less in my case as I don't buy a ticket. But there are always winners and statistically I could be the one with the big grin and hopefully all my own teeth, saying it won't change my life and you can be pretty sure statistically that I will be lying through self same teeth, false or otherwise.
Don't know if I will have a bed tomorrow and don't know if the bed will have wifi. in fact don't know anything except that I will post news when I can.
Jean; I am thinking of you. Your humor and honesty is refreshing and brave. I think I have written that my daughter was dx w/LMS of the stomach/rectum 3 years ago. She has been 3 years NED until this past week. A 1 cm tumor was found in her esophagus. It is small, but docs can't operate..another round of chemo/radiation. She turns 26 this month. She has 2 little children. All we can do it focus on BEATING THOSE BLOODY ODDS....and do it with fire and brimstone. Here's to you my cyber friend. From across the ocean, xxxpatti
ReplyDeletePatti I am so sorry to hear about your daughter, Hope I am not telling my grandma to suck eggs etc but have you thought about a second opinion re the surgery? Might be worth a try. I really feel for you, I would much rather have this thing myself than my daughter having it. So here's to you too and all the very best to you both
ReplyDeleteJean X
Not that this helps and fearing levity is inappropriate, to about 7 decimal places your chances of winning the lottery are the same whether or not you buy a ticket...
ReplyDeleteLevity is wonderful Rudy and I knew you would help me with the Maths
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