I slept uncomfortably in that little white room, the low hum and buzzing of machines, Dexters soft murmers in his sleep. It was the 20th of December 2019 and the Christmas spirit was in low supply. I was drained, exhausted by this dance already and we'd only been playing it for 20 days. I looked at my lovely little boy sleeping on the crispy uncomfortable hospital pillow and I wanted to scoop him up into my arms and rush him home where he belonged.
Jack had texted early, he was dropping Trixie to nursery and then coming up to the hospital. He came in armed with fizzy waters and a tea, I uncurled from the chair, my limbs heavy and bruised from lying against the hard arm of the chair. My eyes were bleary as his familiar shaped shadow appeared in the door way, he softy trod and handed me supplies before taking a seat on the other side of the bed.
Everyone knows the realities of cancer, the treatment makes you sick as a dog, you loose any resemblance of the glow skinned human you were before and it's replaced with a grey gaunt, hairless shadow of the person you used to be. dexter was only two weeks into chemotherapy, he was due for the next round in seven days and he still very much looked like the dexter we had always known at this point.
The nurse fumbles through the door with her blood pressure machine and a drip full of antibiotics. She abruptly hits the lights, our eyes smarted under the florescent glare that bursts through the room and Dexter instantly steers from sleep. Stretching and whispering, he rose from his bed, leaving an imprint of himself behind. I gasped in shock, clumps of his beautiful blonde hair lay in clumps over his pillow. I knew his hair was going to fall out, but I thought it was going to be gradual, this was the moment.
I tried to say to Jack what I was seeing, I tried to talk but my mouth wobbled and my voice cracked. I frantically brushed at his teeshirt, and the pillow, I didn't want Dexter to see he was covered in hair. The nurse stared at me. I burst into tears ' I didn't think it would be like this.' Was all I could manage.
'This is when we advice parents to shave it off or at least cut it short so it's less distressing when it all comes out.' I couldn't compose myself, so I went to the bathroom, while Jack chatted to Dex about Mario kart.
I know it seems like such a small thing, when you think that in the last twenty days Dexter had had, a double Hickman line put through the whole of his chest, a life saving biopsy, three CT scans, MRI scans, three days of chemotherapy, eye tests, lumber punctures, sickness and blood and platelet transfusions and here I was crying over a pillow full of hair, but his beautiful golden hair was such an identifier, someones hair is so personal and it holds a lot of their identity, and suddenly on that morning, Dexters hair was falling limp from his head because his body was fighting poison which was working its way through his body, killing any cell off, even the good ones, and it was leaving the persona of cancer behind, all of a sudden I was looking at Dexter and I was seeing the Cancer.
I gathered myself, I felt ridiculous, I'd embarrassed myself in front of the nurse, I wouldn't be able to look at her for the rest of our stay. Luckily we were being moved to a room on the wing, Dexter was neutropenic and was fighting off either an infection or his body couldn't cope with the bacteria on his own body.
We were put in a room on our own so he wasn't exposed to others.
There we spoke to Dexter about his hair was falling out and now it was probably time for the mohawk he'd been thinking about. On a rainy day in school he would often try and mould his hair so it would stand up on end, giggling and laughing about it with his friend Max.
Today he was getting one for real, and he seemed delighted about it, he wanted it to be blue or green.
He was very sweet and he'd received a beautifully made quilt from a kind person Jack knew from work, who'd been through their own tragic journey with Cancer, it was all feeling very real and very sad, but Dexter was so accepting and so lovely.
Now this was happening, it was ok, I always knew it was on the cards but it had really shocked me, the night before I'd put my little boy to bed and his hair was fine, it was strong and the next day it was falling from his scalp with ease.
Dexter was excited, he thought it was all such a laugh, he knew he was ill but he wanted to show his friends his new hair.
I stayed with Dex all day but I was going home and swapping with jack, I noticed in less than 8 hours, the mohawk was loose, it was falling out between my fingers as I stroked it, within less than half a day we realised it had to go too. I felt so sad, it was too quick.
The next day as we stay in the painfully hot room we waited for Dexter's cultures to come back, they came back clear but the consultants wanted to talk to us. The poole consultant was reluctant to tell us about the prognosis we'd been given, they spoke about the dangers of this kind of cancer, but everything was sugar coated, Jack and I wanted a realistic gauge on what we were dealing with , was this going to be our last Christmas with Dexter?
Our doctor had asked our specialist, apparently she was shocked, and that no of course not, but the truth was she didn't know.
The realistic outcomes and treatment and the reality of this chat, would soon come to light after the Christmas period, they hadn't been as blatantly blunt with the percentages, outcomes or treatments available to us because they didn't want to ruin our Christmas, but lets face it, it was ruined for it all already.
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