This blog started when I was about to embark on a remarkable journey. And I guess, in a way, I'm about to embark on another remarkable journey, but the beginning seems to blend in with the end of the last journey. Tom and I went to Japan. We came back. We were in love. This I am sure of. But there is so much to feel unsure about...
How to start? Do I tell you about what happened year-on-year? This year; this. That year; that. Hmmm... seems too difficult to tell the story that way, and as much as history is subjective, I want to tell the story in a way that is as objective as possible. I am not here to defame anyone or blame anyone. I'm just here to try and figure out what happened, maybe share my experience, and maybe someone can find solace in my story, learn to empathise with people who have been through what I've been through, or just get a good read out of it. Because I'm not a bad writer at the end of the day.
I just assumed that I had found my forever path. Like so many of life's questions were answered, never to be asked again. But I was wrong. Forever wasn't there. It all turned to ashes in my mouth and the things I took for granted were gone.
So let's start with Mum.
The cancer was discovered in 2011. A nagging pain in the side was misdiagnosed a few times. The fevers were attributed to menopause; the aches to muscle soreness from moving house. The weight loss was from a healthy diet, the lethargy from being too active. Until she couldn't be active. My mother, the tigress, was reduced to a kitten. The air that she breathed could no longer nourish her. She was fading away before our very eyes. And it was then that our dear friends in the medical profession finally looked beyond the obvious, prosaic answers, and tested for leukaemia.
And there it was. As plain as day. Blood swabs full of blasts. Blasts are, for the uninitiated, immature blood cells - too small to carry the oxygen an adult needs. Blood is manufactured in human adults in the ribcage, spine and hips. As leukaemia sets in, these bones become porous. They rot from the inside out. The precious marrow that for the last however many years of your life has uncomplainingly gone about the business of recycling and remaking those precious little red cells and white cells that make you alive, suddenly start to rebel. And complain; they say bone pain is awful. In the canon of "which pain is most awful," chronic bone pain is considered to be one of the worst, and with leukaemia there is no flood of hormones and adrenaline to carry you through, like with a broken bone or childbirth. All that you have is a growing ache that comes alive as your bones die from within you. And then you die.
My mother faced this news with grim determination, single-minded in the idea that she would fight and she would win. End of 2011, I jumped on a plane down to Hobart, little knowing that this would be the first of many, to see my mother in hospital as she received her first round of chemotherapy. I was beside myself. After seeing my father fade away from cancer so quickly, from diagnosis to death within three months, I was on full panic stations. My mother seemed so hale and hearty, growing into her old age with more grace than I had ever expected. I was ready to see her bounce the children I was planning with Tom on her knee, and tell them all the things that grandmothers yearn to tell their grandchildren. I wasn't ready for her to die. And she wasn't ready to die either. She had plans. She'd just retired. She was planning the next thirty years, and now we didn't know if we had thirty months or even thirty days.
The doctors were cagy. They gave us very few prognoses at the outset. They just threw all the chemo they could at my mother. And the chemo made her ill. Very, very ill. This is fighting poison with poison, just hoping that neither of them killed Mum in the process. A dangerous game with bad odds, played by well-meaning medical professionals who are balancing an innumerable number of variables, that ends up playing out with a bucket of drugs, one after another, to cover up the side-effects of the last one.
I went to the GP and got a referral to see a psychologist. Dr Sonia. She really helped calm me down in those first few months, to help me prepare for the eventuality that this cancer was playing for keeps and my mother's chances of survival in the current medical environment were slim to none. And I quickly came to a sense of peace. That the key to life is not doing things you will regret, and that the only regret I could have is to not have a good relationship with my mother when the time came that she would pass away. And our friendship grew so much stronger with the two of us using this as our guiding light. Petty fights never boiled up any more. Disappointments were handled with a sad smile and a hug. Where there used to be fire in our relationship there was now calm waters. We came to accept each other and our fate very early in the piece, and I think we were healed quite deeply by the way that we faced those final months.
The first round of chemo quickly led to a second, there were some small wins, the cancer seemed to shrink away, but my mother was so weakened by the chemo that they put her on some low-dosage chemo that just kept her ticking away - not well enough to do much, but not unwell enough to be bed bound. She shuffled around the house in her slippers for a while like that, with many midnight runs to the hospital with fevers from almost constant opportunistic infections. For a while it felt like the infections might be the thing that would finally finish her off. But they didn't.
Mum tired of the low-dosage chemo and told them to go for broke. Her attitude was to go down fighting if she had to go at all. So she went into St John's Hospital and they blasted her with the strongest thing they had for leukaemia that they had. That was October 2013. And I sat in the hospital room a couple of times with her. She was so bombed out of her mind on pain killers she could barely listen to other people talk, let alone speak for herself. A strange little child-like version of my mother... the tigress, reduced to a kitten once more. The pain drugs were strong. Really strong. This was hospice/palliative care, not curative medicine, just an attempt to make my mother comfortable for when the time came. I don't think the hospital thought she'd make it, and that this was all folly, throwing good chemotherapy drugs after bad.
But then it worked and my mother came back to us for a while. She awoke from that strange childlike opiate slumber and rubbed the crust from her eyes. And weaned herself off the pain drugs and went home for the first time in months. It was summer. She was able to enjoy the garden and the sunlight on her skin. It was a precious, surreal time, playing with the sheep and the fish in the pond. She wasn't the same strong bodied woman who had started this journey, but she was happy. It was really lovely.
Then the cancer came back, and the chemo stopped working, and finally, my mother downed arms. There was no more that could be done if we couldn't find a bone marrow donor. And a bone marrow donor couldn't be found. I wasn't suitable, Rowan wasn't, none of the sisters, all of the extended family (right back to England), no one could match her bone marrow.
I guess it finally proves, she was a true original.
Between April and June 2014 I spent most of my time with her in Tasmania. I would bring her hampers of foods that she loved so she didn't have to endure the hospital slop. We played cards. I got her to tell me stories of her childhood, and I wrote them down diligently. Pictures from a childhood in Claremont, three marriages of varying quality, great love for her kids. It was like I only got to know some parts of her in those last weeks and I wonder how much more we would have gotten to share had our time together not been stolen from us.
On Friday 13 June 2014, she died. And I was not there. And that, is another story for another time.
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