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24. December 2016 19:06
by Eleanor Massey

Toot toot, beep beep

24. December 2016 19:06 by Eleanor Massey | 0 Comments

I’m not convinced you ever become accustomed to the piercing beeps of an infusion machine. Beeps when it starts, beeps when it stops. Beeps when it’s about to stop. Beeps when it wants to start, but can’t. A repeated case of ‘occlusion’ or blockage – argh! – my pet hate. Beep the nurse to let her know – she comes in and un-beeps. Beeps. Beeps. Beeps. I believe that as annoying as they sounded at the time, those beeps provided me with some sort of comfort blanket to cosy up with at night in the hospital. On my nights off when Spencer would do a night shift, the silence of our house would deafen me. I needed the beeps in the beginning to know that action was being taken, that Big Brother was watching and that in the moments when I could finally close my eyes, I would know that somebody else was caring for my boy. It would be a couple of days before I would sleep, however, and that first night has gone down as the longest, most delirious night of my life. I felt drunk. Maybe it was dehydration on account of how much fluid I must have lost through my eyes. I lay on my side on the skinny little mattress – stroking my tiny secret bump. In this vast, foreign, clinical space I watched as Jacob breathed; looking to see his chest rise and fall as I did when he was only hours old in his incubator. I watched the blood fill his veins. I visualised his vampire-like thirst being quenched. I imagined his body getting instantly stronger like Popeye with his Spinach; becoming somewhat excited to see how he would act after having his superjuice. For some reason I had it in my head he would bound out of bed in the morning full of beans.

After what felt like a million beeps later I had managed to think my way through to dawn and the boys began to stir. Big day today. Tests would be done, questions would be answered. We would get to meet a specialist. The first big milestone of the day was a general anaesthetic for Jacob to have a lumbar puncture and bone marrow aspirate. There was absolutely no way I could deal with watching Jacob’s eyes roll into unconsciousness today – I simply did not have the strength to deal with that. Spencer would become chief ‘holder for the put-to-sleeps’ for the next couple of weeks, while I still got my head around the thought of Jacob being taken away to a theatre while people prodded and cut through his perfect skin. This was Christmas Eve, and all a bit of a blur really. I should have been at home, sneaking around plotting wonderful lies – playing the man with a beard. Christmas, Shmismas. I couldn’t have cared less. Charity figures and Giggle Doctors came and went in an attempt to cheer everybody up. Jacob was loving the attention, although becoming increasingly ‘different’ as the hours went on. Doctors and Macmillan nurses kept us up to date, and I’d seemed to have become an expert in blood cancer overnight. My brain developed the sudden ability to absorb every medical fact that it heard or read like a sponge, and by the time we went in to speak with a Consultant about the findings of Jacob’s tests – I felt like a pro.

The only way I can describe Jacob’s Consultant is as a Royal Manchester Children’s Hospital Demigod. Professor Rob Wynn. He walks the wards with an entourage of academics, almost like groupies. He has an overwhelming air of calm about him; every question he is asked is responded to with such assurance and impeccable knowledge. I liked him immediately. We sat in his office for the first time once he had completed his bone marrow aspirate on Jacob. The walls were adorned with beautiful drawings and messages from children and families he had helped over the years. There must be thousands of them. Rob confirmed Jacob’s diagnosis to us as being ‘Common Acute Lymphoblastic Leukaemia’. He told us it is the most common type of childhood cancer, and that the prognosis is generally good. He explained the genetic makeup of Jacob’s disease, but that his sisters weren’t at any risk of having the same issue. He told us that as a boy his prognosis was inferior; that girls have a better chance of survival, but for that reason he will be treated for a year longer than girls are. He told us that the treatment will be approximately three years and three months long. Three whole years and three months. This was Jacob’s exact age. He was about to live his entire lifetime over again on chemotherapy. This just couldn’t compute. I always thought people with cancer have to have a few operations and a few months of chemo and they hopefully get ‘the all clear’. How could I possibly comprehend that it would be the same amount of time since the day Jacob was born up to the present day, until he could be once again cancer free? There was no time to dwell. I perched on a chair in Rob’s office, poised like I was one of the Scholars; absorbing every morsel of information coming at me. Me and Spencer laughed afterwards as Rob queried whether I worked in the medical field! On the contrary, Spencer (Mr Intellectual) repeatedly asked ridiculous questions.  At one point he had been aghast at the prospect of Jacob having a ‘Lung Puncture’ – “Isn’t that a bit risky puncturing his lung?”. I’m not sure where my sudden Biology Phd appeared from. Needless to say, my specialist subject was definitely only A.L.L and I’m already very rusty. So my unofficial role became Jacob’s Treatment Manager and Spencer was appointed as Chief Entertainer.  Once the news was digested by Spencer, it took him no time to accept the ultimate crusade and begin his new job was Ward Clown. I found Spencer’s behaviour in the early days borderline inappropriate. He was giddy, excitable and generally in-upset. On reflection I realise that this was his own personal way of dealing with devastation – and Jacob needed his Daddy to bring the laughs.

Christmas Eve was the first day that the rest of the family saw Jacob through new eyes.  The adrenaline was already buzzing through me and I had no more tears to cry. Now it was time to begin pitying others. My mum’s Grandson has cancer. My niece’s little cousin has cancer. I watched as each of them first caught sight of Jacob in his new clinical environment. Their sorrow was heart-wrenching to witness, but somehow at that point, it was never about me or Jacob. I now knew we had the fuel to fight – we had whizzed through the shock stage, the acceptance… The rest of the family seemed to still be in a state of utter disbelief. Staff had wasted no time in beginning to pump Jacob with prophylactic drugs and astonishingly side-effects were already evident. He wanted to be excited by the attention he was receiving – all the special people in his world were surrounding him, yet I could see uneasiness in his eyes. There were no Christmas present rules - he tried his best to climb aboard the new Ben 10 scooter Auntie Anna brought for him. He attempted to tear around with his cousin like he usually would. However, there was something stopping him from being ‘just Jacob’ and this was probably the point at which I started to feel that I was losing my toddler. He was going to have to grow up rapidly in order to undertake the gauntlet that lie ahead. Jacob was now required to spend his days undergoing unpleasant tests and treatments, rather than discovering the world through enjoyable play like he should be. His growing vocabulary was about to include a whole new genre of words. Platelets, haemoglobin, white blood cells, transfusion. ‘Th’ is for thumb prick. His books would be colourful cartoon images of children with no hair. Jacob was a 3 year old boy. I have always since said that if you are going to get a childhood cancer diagnosis then 3 may be the perfect age to get it. Too young to know the sheer enormity of the diagnosis and the serious and scary consequences, yet old enough to somehow be told why Mummy and Daddy are letting people do horrible things to you. Somehow.

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