Every story has a beginning mine began 49 years ago when my baby brother was born, sounds good doesn't it but I'm 52 and can't really remember it ! So I'll make it brief and skip to the bits I can, cheeky, mischievous, always the baby of the family, pain in the butt, yet always knew where to come when he needed a cuddle or a couple of quid! Your typical little brother who when he found out you were scared of worms would spend hours digging for them then call you outside and throw them at you, who's first pet was a ferret that would often be accidentally "left" in your bedroom, fast forward to his next pet a snake, that again magically made its way to your bedroom! And on it went through our childhood, through school years, through first jobs and first girlfriends. We were no different than anyone else I knew, we just got on with living our lives, we grew up or rather I did, you're baby brother will always and forever be your baby brother. Others see him as the adult he has become but to me I will always see that little boy, funny, cheeky, loving and whenever he needed me I like to think I was there for him, now more than ever he needs me...... I find myself today living in a world, travelling a road that only happens "to other people" I don't want to go down this road, I don't want to be the strong one, I don't want to do this but like so many others that have gone before and will come in the future I have no choice. Everybody says what a fantastic sister I am, how strong and sensible and brave I am, I don't feel any of those things right now I feel scared, I feel lonely, I feel angry, I feel things that I haven't yet found the words to describe. I can't say any of this out loud because I'm Shortys big sister and I have a role to fulfill so I'm going to write it down here, where nobody knows me, where I can say how I feel without hurting or scaring anyone, where I can speak the truth. You can come with me if you want....
So we'll start with how it began. My brother was experiencing headaches, strange smells, strange sensations and "funny little do's" he visited the doctors time and time again over the last 8 or 9 months, each time he was sent on his way with a pain killer or two. Never once was he offered a scan, X-ray, referral to any specialist and always saw the same doctor. Just over a month ago he saw a "locum" doctor who listened and acted immediately, he was sent off for a CT head on a Sunday afternoon, on the 19th March 2017 within minutes of starting the scan they stopped it and brought a doctor, he was told that they had seen a "lesion" on his brain and wanted to keep him overnight and do some more tests the following day. We were communicating at this stage by text, my blood ran cold as I read "I'm coming home sis, I'm so scared, I think this is the beginning of the end"
So a bit about me next. I'm 52, married with 2 gorgeous girls. I work in the local hospital on a very busy Acute Medical Unit, I'm not clinical, I'm admin through and through. I started about 10 years ago as a "Secretary" the last 10 years have seen me and my role evolve as the unit has grown to a role that doesn't even actually have a name! I do everything and anything that is needed admin wise, from dealing with patient's follow up care, complaints, compliments, teaching, guidelines, you name it if it involves admin and organisation then I do it! And I do it with a passion, I love going to work, I love my colleagues, I love our NHS and if I can help anybody, be it patient or colleague then I do it with pleasure.
So.... he won't stay in the hospital he's at for the scan ( not the hospital I work in, just the first one that had availability for his scan) he's off, he's going home.....his big sister will sort it out tomorrow he tells them, So the following day I take him in to work with me, a bit like the "take your child to work day" well I took my little brother . I have the utmost faith in my colleagues and I knew that they would do their absolute best for us, as they do each and every day for every patient that comes through our doors. Monday the 20th March at 9am as I walked down the corridor with my baby brother trailing behind me I met the eyes of one of my colleagues, one of my "work family" I knew instantly that she'd seen the scan that the other hospital had sent through and I knew in my heart of hearts this was bad. Within 48 hours he'd been scanned from head to toe, poked and prodded, bled, fed, watered, discussed and loved and cared for just like I knew he would be. Before we knew it we were sat with a Surgeon nearly 50 miles away from home and been given the deathly blow that this was a tumour and this wasn't looking good.
Friday the 24th March came the surgery, over six hours of major brain surgery as they attempted to remove as much of this god awful thing as they could safely do. I spend this time pacing, drinking coffee, pacing some more, if they don't get him out of theatre now I'm going in to get him, he's my baby brother, he needs me. I wonder why in gods name did I stop smoking, I need a cigarette now more than ever. I pace some more. Then he's out, he's awake, he bounces back, recovers like a good un'.
Monday 27th March comes, I can take him home, he's done amazingly well, we feel a sense of relief, it's over we can start getting back to "normal" whatever that is.
Histology from the tumour comes back in 10-14 days, we have some time to rest, take a deep breath and get back to our lives.
No, hang on big sis, don't get too comfy ..... fast forward two more days to Wednesday 29th March, he's home chilling, resting, recovering and I'm back at work doing what I love when my phone rings, I clock the number straight away, it's the hospital in Leeds, my heart sinks to my shoes "hi big sis (obviously they didn't say that, they said my name ) can you bring him back", "what?, now?, I'm at work, it'll take me at least 2 hours to leave, pick him up, bring him back to you" like they're going to reply "oh don't worry, bring him next week, it can wait" not a chance in hell, so off we go again.....
So in the short space of only 10 days I find myself In the middle of a nightmare, a nightmare that you read about, that happens to someone else, it doesn't happen to you and during this 10 days the years have slipped away, rolled back to the times when "big sister will sort it" she's smart, she's clever, she's brave, she can fix this. And when I say the years have slipped away, I mean it! Any talking to be done, talk to "my big sis" "don't tell me, tell her" "she can tell me later" "she explains it better than anyone" and me, the big sister, well I'm dying, I'm in a thousand pieces, my baby brother has a Glioblastoma, its incurable, its big, its nasty, it's still there, it's going to kill him and for the first time in my life, in our lives, I can do nothing. Why him? Why not me?
I feel a deep rooted pain that radiates to every part of my body and lays heavy on my heart and as each day passes this pain I feel for my baby brother grows. I'm racked with a million questions, a trillion worrys. Inside it's eating me away and yet on the outside I'm Shorty's Big Sister and I will do everything and anything to keep him safe and protect him.
