Up until September 14 2020 I lived in New South Wales, in Australia. On that day, a friend drove me to the adjoining state Queensland and negotiated with the border police to get me through the Covid 19 barrier between the two states. I was sicker than anyone guessed.
My friend took me to hospital where I was diagnosed with stage 4 lymphoma, a cancer of the immune system. Treatment began right away. Chemo. Six cycles of R-CHOP at three weekly intervals. Then four lumbar punctures with same drugs and a rituximab (monoclonal antibody) chaser. My last treatment and PET scan in February. I’m in remission.
Long time readers will say that I’ve said all that before. I have. I wanted to feel what it felt like now, to look back on it, six months down the track.
At first, being in remission was the most frightening place on Earth. The reality of dealing with the after- and side-effects of both the chemo and the lymphoma on my own was pure anxiety. Luckily there’s a really good support group on FaceBook that we haunt, all of us in the Downunder Lymphoma boat, and I’ve only had to call the ambulance twice. So here I am, six months into the remission journey.
What with Covid lock-downs and a really low immune system … like, no B cells! … I’ve been pretty well housebound except for food shopping, doctors appointments and walks. So I thought I’d get back into writing reading knitting music pretty easily. Lots of time after all.
I’d be lying if I told you yes, really easy.
Early on I spent most of my time sorting through the stuff that came with my decision to stay in Brisbane. I had a lot of books, not all of them fit on the shelves I now have. Clothes, the same. Textile crafts, the same. And I’m still at it, every so often. Divesting myself of my old life to be able to fit into my new life.
I’ll write that sentence again and even bold it. Divesting myself of my old life to be able to fit into my new life.
It suggests my new life is smaller. I’m not talking about its length, more what I can do in my days … and so also today, this minute, I need to stop this meandering. More on this as time permits.
This is the (1) before the previous (1). I thought I wouldn’t need reading in my new life?
The idea that I could slough off my old life and take up a completely new one isn’t happening and was probably doomed from the start. It’s true that while I was in treatment, I put everything normally ‘me’ out of my mind to keep my attention on the main event, to learn the disease, what was required every day, learn the people involved, how the meds affected me, keep my oxygen line straight. [I was on oxygen for ten days]
But after a while it became necessary to take up reading again. In between engaging with staff, which was mostly in the mornings, hung swags of time. Watching TV while in hospital is difficult. Volume is restricted. You can’t turn the TV off, attend the x, y, z person/procedure needing your attention, and turn it back on expect to hit the same place where you left off. The remote is fiddly, usually on the same gadget as the nurse’s call button.
While I was on the Oncology Ward at John Flynn Hospital, out in the corridors practicing my walking, I discovered nooks with bookshelves filled with books. Life-savers, in effect. Not that I read every book. But every walk I took, I’d change a book, like at at a library. I’ve read both fiction and non-fiction voraciously for most of my life.
I’m now officially in remission with a totally clear PET scan. My last chemo session was at the end of January, followed by two Rituximab (monoclonal antibodies) chasers taking me into the beginning of March. A ‘stupendous recovery’ my hematologist calls it, given where I began. My hair started growing again the week of the first chaser. My toenails apparently need more time.
Since I moved into the unit where I’m living now, I’ve been sorting through books … nineteen boxes of them. Some books don’t need a decision. Anything to do with fungi make it onto the shelves beside my work station. Fiction using fungi as plot devices, bad or good, also onto the shelves.
Most other books get the will-I-want-to-read-this-again question. If not, straight into the remaindered pile. If maybe, I open the book anywhere and read a few pages. If boredom sets in after only a few paragraphs, into a remaindered pile it goes. The books that will be sent on their way so far number about eight boxes.
Other things I’m reading at the moment are an article titled Proposal for a subdivision of the family Psathyrellaceae, which I keep for breakfast reading since it is a .pdf and must be read on the laptop. ‘Sideshow’ by Sheri S Tepper. This follows on from ‘Raising the Stones’ which is one of fungi-related novels in my collection. Tin Tin in Adventures on the Moon by Herge for light relief. And I’m thinking of soon reading ‘Meld’ the second part of my trilogy Doomed