Hello everyone
Just thought I’d share my frustrations with you tonight. I’d delayed starting my chemo because I thought I was going to be able to take part in an international breast cancer drug trial. Now, after waiting for 3 weeks while my paperwork was processed in America and France, I was told this morning I am not eligible for the trial after all!
And this is all for the sake of 2 nodules! My surgeon only took 4 lymph nodes out when he discovered they did not carry any cancer cells, and that’s why I do not qualify for the trials. Apparently you need to have had 6 taken out! Now I find out that if I hadn’t delayed, I could have been onto my second cycle of chemo as we speak!
The thing that distresses me most is that I wasn’t told I didn’t qualify, with only 4 nodes removed, for the 6 node protocol at my first meeting in hospital. It is pretty devastating.
The other disappointing issue is that even before I was diagnosed I had already worked voluntarily with women who were on clinical trials from all around Australia, so I saw being on the trials myself as a positive (sorry about that pun) legacy for future sufferers of breast cancer.
I had also developed a rapport with Kathryn and Annette—the clinical trials nurses here at the hospital—during the information sessions before my chemo and radiotherapy. And now they won’t be treating me, I feel as though I am out on my own, all by myself. However after seeing me sobbing in the oncology room, Annette and Kathryn have adopted me and have said they will continue to help me even though I’m not a legal triallist. They are so lovely, it affirms my belief in the genuine goodness of people.
Anyway, what’s now happening is that basic chemo starts on Friday morning. The good thing is at least now I can confirm my 6 month idyll (oops, oops: I WILL be working very hard) in Greece for the Olympics!
Thanks, FOAMs, for your ongoing love and support. I only hope I live enough decades to repay all your kindnesses.
AM
PS When I’m objective about it, the reason I’m not eligible is that the cancer had not spread enough to taint the nodes. So I will be fine and still live to be that 94-yr-old wicked woman.