Thank you so much for your message! I have read of your experiences on the storyboard. I wanted to reply, but every time I started to write, I had to cry instead. The generosity and support here is overwhelming.
YES! All you said about the anticipation is so very true. Ava's attitude right now is, "Let's get 'er done!" I believe she will maintain. Meanwhile, she's intent upon having as "normal" a life between now and the surgery, she says, "As much as anyone can who wears Depends!" That's funny to the two of us! Her small grandsons visit from out-of-state (but close by), and that gives her tremendous joy.
They won't have their computer connected until after the 23rd (one company, lonnnng list), but I will talk with her and give her your very sweet message.
Thank you doesn't begin to cover it! Bless you and all those you love and who love you!
Its great news her scans came back with signs of spread of disease.
I am sure she will be fine and get through the surgery without problems.
I had similar surgery in August and am of a similar age to your sister so many people are quite a bit older.
If I can help at all or she wants to PM me please feel free to do so.
It is life changing surgery but as I have said before I found the anticipation the worst part once you start treatment it seems easier.
Good luck and lots of love Claire x
My sister Ava had a bone scan and lung x-ray yesterday--BOTH came back clean! [smiley=vrolijk_1.gif]
Had her second opinion P&P this a.m. at UConn Health Center. She saw her bladder and its contents. Her doctor, also a researcher, said he had never seen anything like it before: there were "jelly fish-like" globs floating around in there.
Her bladder is a "total mess," and her doctor says she qualifies only for an ileal conduit. She is scheduled for surgery (RC) on Monday, January 22.
All the reports? They will receive them in 3-4 days.
Meanwhile, Ava is in very good spirits. She is positive and ready for the challenges that face her. And she in now in a mindset to educate herself.
If anyone has any experience/knowledge of "jelly fish-like" bladder globs, please post! Thank you.
What you said: Yes, of course! Thank you for your concern.
"...partial, word-of-mouth" is all we have to go on right now. Although she tried for two days, she has not heard back from the surgeon. A long, long weekend for everyone, but especially for her.
I don't have your firsthand experience; none of us does in our family. We are educating ourselves. I think it is "normal" to be feeling what we are feeling at this point... also, thinking what we are thinking: that Little Bird will beat this!
My posts are not necessarily representative of the rest of my family. They reflect how I feel, at this moment. Writing in a supportive environment is soothing. There is no understanding like the understanding one receives from somone who has the experience.
Via this site, I discovered the Ellsworth and Carswell book, 100 Questions & Answers About Bladder Cancer, and have read it and each and every post on this site, and have explored several others. All so that I can undersand this illness, the jargon, the seemingly infinite variety of choices, etc., almost ad infinitum. Knowledge is power.
More, I am overwhelmed by the genuineness and kindness of people who have shared the intimate details of their illnesses--all to help those who are just starting the journey.
I think you are a strong-willed woman! Ava is, too! Thank you for your blessings to Ava and me. They are gratefully accepted.