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And so it begins…

We were soon greeted by a specialist nurse at Eleanor’s recovery bedside, she told us she would be taking us to the ward where we would be staying and that we would be visited the following day by a neurosurgeon who would be able to give us more information. At this point we had no idea how long we would be staying and all I could think was that I didn’t have any pyjamas to sleep in, like THAT was suddenly important, it is incredible what rubbish comes in to your mind at times of panic! The specialist nurse showed us to the ward and over to what was to be Eleanor’s bed, passing the parents kitchen she told me there was a shared fridge where we could keep our food. I remember holding Eleanor tight in my arms and wanting to scream at the top of my lungs. I didn’t want to know about this parents kitchen or the play room or the times that meals are provided. I did not want to be there, I just wanted to go home and take my baby girl with me. Eleanor was in full spirits and within minutes she was entertaining the ward doing her best XFactor auditions. Tim stayed for as long as he could, he spent a small fortune on snacks in the Marks & Spencer and then left with a list of things he needed to bring for the days ahead. I hated watching him leave, it felt barbaric for them to separate us after such devastating news. I didn’t sleep that night, I lay there in my clothes on a hard leather chair/bed staring at my little girl, crying so hard it gave me a headache, praying and praying that they had made a mistake and this was all one big misunderstanding. At one point I got up and sat in the empty bay window and stared out over London, wondering how many other parents were doing exactly as I was at that moment. It was so surreal, like a movie, except it wasn’t a movie. It was happening and I had never been so scared in my life.

The next day came and when Tim arrived in the morning with my Mum I was so grateful to see them (and for my clean clothes, underwear and makeup remover!) we passed the morning with a little walk around the ward and battling with Eleanor to take her medicine. I was lying on the bed with her at one point snoozing when an important looking man in a suit came over to the bed. We were expecting to be meeting a consultant neurosurgeon so when this man introduced himself as a consultant oncologist I was confused, an oncologist!? A cancer doctor!? Cancer didn’t even enter my thoughts when we were told there was something in Eleanor’s head. Why was a cancer doctor coming to see us!?

The doctor took us to a room where he sat with us and explained what they had found in Eleanor’s head. The magic name for Eleanor’s tumour is a ‘Hypothalamic Glioma’ or ‘Pilocytic Astrocytoma’. The tumour has also invaded the Optic Chiasm which is why her vision has been affected. We were told surgery would be avoided at all costs due to the location of the tumour. The Hypothalamus is deep inside the brain and any surgery, even a biopsy could cause more damage than good. The doctor explained that this type of tumour is usually benign (low grade I or II) but it will be treated with chemotherapy regardless. Chemotherapy, another cancer word. That word evokes images of balding children, with tubes everywhere fighting terrible illnesses. I was terrified. I started to get upset about her losing her hair, another stupid, and in the grand scheme of things, pretty insignificant thought.

We were told Eleanor would need to have a portacath fitted on her chest under her skin so they could start chemotherapy as soon as possible.

That night we were discharged and allowed to go home for a week and that the next step would be an operation to fit the portacath. Eleanor and my Mum skipped out of the hospital that night laughing and giggling that they were escaping, it made me feel sick to my stomach that hospitals would very soon be a much larger part of our lives than I had ever imagined.

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