The Chorus is Loud Through Tough Times

Dear All,

It is one of those Mondays when I am thankful that it is a brand new week. Last week was a rough one, physically and emotionally.

Uncle Peter has been on my mind constantly. I have replayed so many different memories in my head, and have mostly sought the sound of his voice. It is crystal clear in the tape that runs through my mind, in its warmth, intonation, cadence and affection. “Hearing” his voice brings me to tears but it is also very comforting. It makes me feel very close to him. I need it. I have “talked” to him as I lie in bed at night, and I know that he is listening. His passing brought to the forefront the struggle that I have with the thought of “death and dying”. Since the beginning of this journey of mine, those words continue to weave themselves in the undercurrent of my marathon: they fuel the fear that I fight so hard to keep at bay and they rudely intrude into the many moments of my days and nights. This past week I have had morbid flashes of what my memorial might be like, of conversations with Julian about his looking after James for me when I am gone… it’s just awful… even as I type this, my eyes well up and the pit in my stomach returns. Those “intrusions” can be so powerful and so overwhelming – I find it hard to breathe and all I want to do is sob. That is NOT going to be my reality, I tell myself. I am NOT going anywhere! Listen to yourself, Danda, you are NOT going anywhere! Those monologues of self-talk are loud and determined, and I gradually calm down and accept those moments of deep sadness and fear for what they are: understandable human moments. I accept them, but I loathe them. And Uncle Peter’s voice strongly and firmly reminds me that I am winning this fight. Doctor Danda, he says, you ARE doing this, do you hear me? His voice joins the chorus of my troops that, without fail or faltering, cheer me on and keep me focussed on that finish line. And my voice, while at times shaky and more than occasionally out of tune, sings the loudest of them all.

My body has had its own particular battle this past week. My hands and feet have been particularly painful, a cumulative combination of the “burning” skin and the inflamed nerve endings. It became unbearable after my chemo Monday, so much so that I had to take heavy pain killers for a couple of nights to try to fall asleep. Even with the meds, the the pain awoke me in the middle of the night, but all I could do at that point was ride it out. Again, visualising proved to be my tool. I visualised the tumours being torched, burned, set on fire, and “watched” them wither and shrivel and be reduced to ashes that, in my characteristically anally retentive way, I proceeded to vacuum up, leaving everything looking “clean”. After a couple of hours, I would manage to drift off to sleep. The night sweats have been bad too (I had four last night, each requiring a change of clothes), but again, I imagined the heat burning the tumours to absolute smithereens…

Having survived the week, I spent the weekend simply immersing myself in James. He is my biggest comfort, my greatest booster, my largest source of pure joy. We played for hours, and I marvelled at how much he takes in, how well he copies so much of what I do, how curious he is about the world around him. We played a lot of music, and he danced and danced and danced… he just loved it… The kid’s got rhythm! [“Strictly Come Dancing” – known as “Dancing with the Stars” in the U.S. - was on television Saturday evening, and he was mesmerised, shaking his little bottom from side to side… I could see Julian frantically making a mental note to expose this poor child to something a little more intellectual… David Attenborough’s Planet Earth series, perhaps..?!]. James’ pretend play is also lovely to watch – his latest source of enjoyment is holding a small, plastic truck in his hand and driving it all over the furniture… “Brmmm! Brmmm!” he goes, off on his imaginative adventure. Bath time was one big splash after another, rubber ducks and foam shapes galore, quickly transforming our tiled bathroom floor into an indoor pond. James filled our home with hysterical giggles and squeals all weekend, none more so than when interacting with my mother who seems to share many a private joke with my little one. We spent a lovely time in the park, marvelling at the autumn leaves and enjoying the crispness in the air. At one point, James crawled right up to me, squeezed me in a tight hug, and then ruffled up my hair with his hands, as if to say, “Everything’s great, Mama”. He’s just the happiest of little boys, and that happiness is infectious.

So, despite having just spent the better part of the day in hospital (my blood work came back its usual low, so the mid-cycle chemo was skipped yet again, requiring the now traditional discussion about when to start the next series of immune boosting injections), I am starting this week with my fighting spirit strong. I have Uncle Peter looking out for me, my burns are scorching the hell out of my cancer, and James is grinning from ear to ear. And those are just a few of the many, many weapons in my armour. And did I mention that Chiara got back from Australia this morning? Hooray!

Hugs to all.