It's been so hard to write since the beginning of January. It's strange the sheer relentlessness of the illness and what's needed to treat it becomes so deadening at times. Even with such a cheering and positive prognosis, the day to day rhthymn of life is demanding.
Ruben takes on average 25 pills a day, often more. I have to remember dosages and timings. I need to time doses to enable the last to be early enough to be manageable for sleep but late enough to allow a gap since his early afternoon ones. Steroids make him sleep fitfully and wake for long anxious periods in the night. Of course he needs reassuring during those periods. And then sometimes everyone wakes up. Even the cat walking across our backs and curling up on the duvet licking the children's hair as Judith Kerr's Mog did. And I stagger into the day, to work and operate well, which I invariably don't.
Everyone understandably needs a lot of care and attention. There are countless appointments, for things which really help; talking, playing, acupuncture, maths but it's like a job just managing it all.
I think we are seeing the end in sight. I can't let us feel enthusiastic relief or gratitude yet but sometimes it leaks into our exchanges.
Dora and I have a late night treat. The boys are asleep and we watch the very lachrymose The Fault in Their Stars , an incredibly cheery film, (two teens with cancer, the one you least expect dies first). Dora turns to me and says with feeling, "we are so lucky, Mummy." (This from a child who has expressed feeling anything but.) I agree with her. She then tells Ruben. He doesn't agree. In fact he pushes her to demonstrate just how much he doesn't agree.
It's a tightrope and the relief that he is responding, and surely recovering has to balance delicately with his experience now. He feels everything so deeply and articulates with such awareness the heaviness of the disease and his misery with it.
His hair is growing back, but he's not ready for it. He wants hair to start when treatment stops.
He continues to feel lousy. And he asks for Home School days. I understand him, he wants to be well and strong for the kids at school. But if he has a HS day tomorrow he has to read the whole of Romeo And Juliet in his bed. Not sure what he'll choose.
I'm cooking all meals again. Kids are happy, I'm more tired because I'm working as fully as I can. But it's starting to feel a bit calmer. I get orders for salmon teriyaki, roast chicken, ( only like grandma Toby) celery soup ( only like grandma) it goes on ...
I've regressed to having no time for anything! Especially being in touch. I regret that. Now it's synagogue work and Ruben and the children to manage; even with help it takes time.
Nice and new things are becoming entrenched. Ruben's lessons with John. He loves his Bar Mitzvah prep. He sent a save the date to his friends for his Birthday/recovery party 25 th April. We're planning sunshine over Pesach holidays, and Rafael and Dora seem happier. Although her maths test was not happy today. One more cycle to go. Our GP said it will all hit only after the chemo is finished. But Like Etty Hilsum I feel it even amidst the horror; sometimes in moments of deep gratitude I have the urge to kneel down ....
We should be ok and are already proving to ourselves we may be.