Wednesday, 5 August 2015

The first few days.

On that first day at UHCW I had a bone marrow biopsy (BMB) to confirm the diagnosis. A needle was passed through the bone in my pelvis to aspirate some fluid and a larger hollow needle was then inserted to gouge a thin tube of spongy bone marrow. I have since had a number of bone marrow biopsies. Once, a doctor I had come to know and like said that he often told patients that it was like a “dull ache”. After he performed a bone marrow biopsy on me I suggested that he have one himself so that he might be able to improve his descriptive talents.

The truth is, it hurts like hell. But in fairness to my doctor-friend, it is really difficult to articulate exactly how it feels. You first have to imagine how hard your pelvic bone is… they don’t really have much give. They are packed to the brim inside with spongy bone marrow. When someone inserts a needle into it, and extracts that marrow, it feels as though a vacuum has been created and the hard bones are bending and being sucked in to compensate. Does that make sense? It’s the best I can do.

For that first BMB (and every single one thereafter) Matthew was there squeezing my hand while a young and lovely SHO called Simon attempted to distract me by talking about television, America and our engagement. But I saw right through it and couldn’t really focus on anything but the pain.

The rest of the evening passed with bouts of crying, periods of silence and attempts to reconcile ourselves with what was happening. Matthew often says how I held it together the best in that first week, but in hindsight I think I honestly didn’t believe it was all happening. I think for perhaps the first six weeks of my illness, nothing really affected me because I didn’t believe it was happening. I still thought I had a leukaemia, not the leukaemia, remember? 

Mum, Dad and Katherine left around 9pm but Matthew stayed with me and barely slept in a reclining chair. He set up the hospital television, paying £50 for the full package and £20 phone credit. I drifted off to sleep early having not slept for days, barely waking for the regular blood pressure checks, fluid bag changes, IV antibiotics, blood transfusions.

The following morning I woke at around 9am. “Day two” I said to Matthew darkly. Soon, a porter had arrived at the door and was explaining that I should be going for a heart scan. Without changing, with greasy hair and dirty clothes, I was advised into a wheelchair and wheeled halfway across the hospital grounds for an ultrasound of my heart, feeling really self-conscious each time we passed visitors and staff in the corridors of the enormous hospital. The sonographer clicked away, taking hundreds of measurements as I lay on my side, naked from the waist up and with cold jelly all over my breasts. Matthew sat looking concerned in the corner of the room and I wondered if this was a routine test or if they also suspected something was wrong with my heart. That’s how I felt a lot during those first few weeks. There was a buzz around me, a rush to get my treatments started, to get all the right and relevant people to see me. To save my life as quickly and as efficiently as possible. 

The same consultant I had seen at George Eliot, who had given me the diagnosis, came to visit later that day. She explained a lot about the chemotherapy treatment, the timescales, what I should eat and drink, how to feel normal throughout all of this. She wrote her mobile number on a napkin and told me to text or call her any time.

The next day my family once again came to see me. My brother had driven back from Brighton where he was studying at university. My extended family had also started to get the messages of my diagnosis too. I got a drunken phone call from my cousin Marc, saying that in a years time we would look back and laugh and that we would all get pissed together and they will never forgive me for worrying them all so much. The texts were flooding in, aunties, uncles, cousins, friends, friends of my parents, friends of my friends parents. It was so overwhelming that when my battery died I didn’t charge my phone for days. My best friend Ellis came to see me that day too, she brought face cream and makeup wipes. We were wearing similar blue polka dot tops when she arrived. She said that she had told herself that she was not going to cry but then completely lost it as she entered the ward. We mainly just hugged and said “what the fuck” a bit.

By Thursday I was desperate to have a shower. Matt arrived early and after my drips had been disconnected, he helped me to wash my hair and shave my armpits. I had already began to sense a change in our relationship since our engagement – but this was something new. Having your fiancĂ© wash your hair and body, feeling totally vulnerable, with no hint of sexuality but just complete care and tenderness, is something that really changes a couple. I realised there that he would prove himself as the man I knew he was through this, that he was in this with me and was going to be my rock. 

Later on Thursday I was moved from my private room to a bay in a four-person ward across the hall. I am not going to lie, I was furious. In the two days I had been there, I felt like I was finding my feet. I liked having an en suite. I liked my privacy. I liked having my own fridge. I liked having my family come to visit out of the normal visiting hours (It turns out that haematology and oncology wards rarely comply with visiting hour rules anyway). I think I was remembering the sleepless night I had had on the acute medical ward the night before I was diagnosed, which had been full of five elderly women who made inexplicable sounds throughout the night. 

My bed was opposite the communal toilet, and there was no door between the beds where we slept and nurses station in the middle of the ward. The patient buzzers sounded constantly and slowly drove me mad as I sat seething behind the curtain that I had pulled around me to shut the world out. There were three other women in the bays. One of the women was called Sylvia and deserves a post all of her own. The second woman was deeply tanned with platinum blonde spiked hair and neon orange nails. She made jokes about the staff and gave them nicknames that stuck for the following six months of my intermittent admissions. I never saw the third woman in the bay next to me, but that Thursday evening Ellis, my mum, Matthew and I heard her have an enema and a subsequent explosive bowel movement with only a thin blue curtain to separate us. Matthew was sat closest and his horrified face only served to set us up in a fit of hysterics. I think it was the first time any of us had laughed in days, and the lightness felt good. 

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