Christies this morning for appointment with Dr McBain. My approach has been to get there early, get my blood test done and then wait to see the consultant. Every time we go, there is what feels like endless waiting. Queue to get registered; sit and wait for my turn to have blood test; sit and wait for an "on time appointment" (as advertised on a screen in the waiting room), that is over an hour late; wait for prescription to be processed. We leave at 9.15 am and get home at 1 pm.
My appointment is all the usual things - my headaches, my stiffness of body, my jaw is still not opening without pain, my hair is growing back etc. The doctor (not Dr McBain) starts to end the appointment. We ask about the scan, and remarkably, she was not aware that I had received no feedback from the scan.
Summarising the feedback: the treatment is working (Hooray!), the remaining tumour has not grown at all, which is called "stable". What happens next is that I continue the next three months of chemotherapy and a couple of months later, I will have another scan. What I hope for is that it is stable, which frees me from immediate further treatment.
Before now, I have understood that the doctors were treating the remains of the original tumour, and I envisaged a skin that was left behind deep in my brain. This is not the case. My original tumour was 8cm in diameter. What remains is a small tumour, described as 6cm x 3cm. I believe that it is unlikely to be removed, or reduced. I think that my healthy future is to live comfortably with a stable tumour. In other words, a tumour that is no longer growing. No-one's ideal scenario I know, but I am sure that I can do it.
Interestingly, Martha and Katy have both been interested in the scan. Katy asks me lots of questions, which is no change to her previous behaviour. "Is it growing?", "no", "Is that good or bad?". However, I have seen a real change in Martha. We had a long (separate) conversation about it, and she pieced together what she knew with what I was telling her. She showed no hesitance and was very relaxed about it. "Why can't they take it all out?", "because they might cause brain damage", "Is it better to have brain damage, or some of the tumour left behind?", "Some of the tumour", with a giggle, "and it's not growing - that's good isn't it?". Both girls understand that it is good news.
I did ask the doctor what "in remission" means. It is not possible for someone with brain cancer to be in remission, because it is not possible to remove the whole tumour. To be in remission you would have no tumour and no cancer cells. I believe my best option is to have a stable tumour. However, as I write this, I do not understand how some people have beaten brain cancer. I will explore further.
Have a good day tomorrow. I start my chemotherapy tomorrow. Anti-sickness pills followed by seven chemo capsules! They have run out of the bigger size, so instead of three capsules, I have seven. I can't remember all the timings now.
Have a good day tomorrow
lots of love
Sarah xxx
