Wednesday 13 March 2013

To Distant Friends

I was bound to have to tell you sooner or later. But it's difficult. It isn't the sort of thing you send in a text, and it's not something I feel comfortable sitting down and discussing when we all get back together.

You've all met my youngest brother, James, I think. And you all know he has a disability - CFC syndrome. I won't bore you with the symptoms, I've probably told you them before, but one is severe eczema. At the start of February he picked up a herpes infection. For the rest of us it would manifest as a coldsore, but for him it's a systemic viral infection. He was admitted to hospital where the virus spread from his skin to his blood, and then on to the rest of him. It took a weak of aggressive antivirals and antibiotics to clear the infection and by all accounts he should be dead. Anyway, we responded quite quickly and had a lucky escape.

He was released from hospital after 7 days and life carried on as it always had. Fast-forward about two weeks, he's still home and all's well. While I was watching him he came into my room and complained about feeling sick. I asked if he had a sick-bowl and he pottered off to get it. But he didn't come back. After a few minutes I went to check on him and found him in the living room, collapsed on the floor, metres from his sick-bowl. We called an ambulance and I managed to get him conscious again but he soon drifted off again and began fitting. His fit lasted for several hours before they got sedated at the hospital. Fearing he had relapsed, doctors started his antivirals again and kept him for another week. They also did a CT scan to check for clots and haemorrhages - there were none. They also performed an MRI just to rule any eventualities out. On this MRI there is a marble-sized mass at the rear of his brain. A follow-up MRI with dye confirmed the mass was not a mistake on the scan or a remnant of his herpes infection. At this time we were told the mass could be anything from a bit of scar tissue to a brain tumour. The plan was to send him home to recover and get fit for a month before passing him off to a neurology team to treat the brain anomaly.

You can probably guess the next bit. He comes home and he's ok for a week. We're now at the start of March. Once again he comes to me and isn't himself - lethargic, dizzy, unresponsive, morose. He's taken back to hospital to get checked out and begins fitting again. They admit him again and his fits become more frequent, from every few days to every few hours. He's still in hospital now and will be for the next few days or weeks at least. Yesterday he forgot who our middle brother and extended family are - remembering only Mum, Dad, Sam and his grandmother.

With the month I've had, I didn't have much time for uni. I spent my time visiting the hospital, working my parents' shifts so they could be with him, and generally picking up the slack at home. As a result I'm not finishing university this year. I decided to interrupt and will hopefully go back and finish my last semester in 2014. My choice was either this, or ignore everything at home and focus solely on my degree. Obviously with the state my brother's in I'm not prepared to forget everyone to pursue a bit of paper with my name on it. Besides, I haven't slept properly or had time to look after myself since seeing him collapsed and fitting a few weeks ago.

I'm not quite sure how to wrap up, other than to say that this made more sense than dropping you a brief text like "lol guess what, not finishing uni, brother's got a tumour" or to wait til we're all together and ruin everyone's night with a whole host of shit. So yeh, you're my friends - you should probably be in the loop.

4 comments:

  1. Oh wow, that has got to be difficult!
    I'm sure your parents appreciate your choice very much - and it's understandable that you want to stay at home to help! I can't even begin to imagine what it is like.
    I hope he does improve!

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    1. You and me both, thanks for the well-wishes Katie (:

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  2. My dear Samuel, I've been thinking about you and am so sorry to hear this. You made the right choice.
    I've been going through family issues myself & have had to rearrange my life accordingly, with no regrets. Also lost my uncle this past week. I've not had much online time ( I know you know what I mean ) , but for one reason or another you've been in my thoughts & I was thinking I should catch up wirh your writing, and see how you were & at that moment this came in the mail. My thoughts and prayers are with you and your family at this time. Pieces of paper will always be there.....I wish you well and hope to hear from you soon. Donna x

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  3. Oh no I'm so sorry to hear this! I hope your brother gets better soon.

    And you've had a really tough time yourself. I hope things get better for you!

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