We go up and down. Different times we obsess over cancer research, death, other people’s stories. I run a lot of searches for people I met at UCSF who I hope are doing ok.
I have no idea what the clinical trial 1 year survival rate is. I know of 3 who had nasty octopus tumors and still made it over a year.
In the abstract, the challenge for others is side effects from the entire experience. My understanding is the brain cancer treatment or end is easier than other types of cancer. I think about BCG and Lucca and how miserable they both must be. They are always having to face the question of how far does one go before the misery makes life too weak, too much.
Teree’s death has continued to be a positive and negative effect. I don’t search for her any more. I have the details I needed to hear. That smile just haunts me in a good way. In July, she told me that she was thinking to walk away from another type of treatment at the end. To live longer, was not the same value as living in better comfort.
To hang around with the other Glioma women, to have them at one’s fingertips…is an incredible support system. I am sad. I won’t call anyone too late, but emails go back and forth and there is chatting. Two of them will be traveling this week and I am praying they take their laptops. We can talk discomfort or death one minute, then how misbehaved a child is the next. If any of us were to go, the other three would be overwhelmed.
The group communication seems sad and yet productive in the same moment. Toby does research about all the other people who have Gliomas. Liz does all the networking to give each of us the chance to widen our community (research too). Bea astounds to be the traveler with a toddler. Lynn is two or three months ahead. She gives me updates on the progress. She is breaking trail. I think my job has been to set the openness with all and to be vocal (to the world, to this page) about circumstances and how we all feel at different times.
At this moment, I feel sad and grateful.