Wednesday, 8 July 2015

The latest hit.


Now I won't lie, I considered also posting this sour and somewhat uncouth tweet as my Facebook status, too. Then I realised that it would receive either zero attention because people may be too scared to cross me while I'm in this supposedly foul mood dealing with this latest bout of shitty news -- or an influx of warm messages of love and sympathy. And I didn't want either.

I hate having to constantly give bad news. I'm aware that it's not what others want to hear, and surely after my stream of it for the past year or so, they'll have run out of ways to console me and words to use to keep me going. Mostly though, it's about disappointing and upsetting those close to me - and due to social media and word of mouth, those who aren't so close to me, too.
Also, I never want to disappoint people who marvel at how positive I am. The people who reach out to me in the street and say 'you're amazing!', or complete strangers who say my story has inspired them, or those who share the links to previous posts (the ones that read much more pleasantly and give more of a gung-ho message than this one) for all their friends to read. 

It's all a series of hits, I've realised. This series could just be the first op, the second op, now this treatment. Three big definitive smacks. Looking closer, there's much more. There's a whole boxing match worth of hits. 
Last year, I have several months of unexplained unusual things happening to my body and state of mind -- that was one. I get a series of treatments and tests in hospital, nothing can be found -- that was two. I finally see a neurologist, who as an afterthought puts me in for a brain MRI, one month later I have the MRI and they clock this growth lodged firmly in my cerebellum and close to my brain stem -- that was three. I have to have this huge 9.5 hour-long operation just over a week after diagnosis -- that was four. My recovery takes forever; I have to almost re-teach my body to get up and move, my face is swollen from steroids and my mind, not my brain, is in a fragile state -- that was five. I get my life back together as best I can, I find a job I love beyond belief and even make new friends, then find only a couple of symptoms are recurring -- that was six. I go back to hospital and get checked out, then it is decided that I need a second operation -- that was seven. I then have a recovery process that really proves you can be in indescribable murderous pain and yet still be awake and able to speak, not to mention one side of my head is inflated hideously with excess brain fluid that has gathered between skull and skin because they had to cut through scar tissue and put in an artificial covering over the bone that was cut out and replaced during surgery -- that was a hefty eight. I finally get home, after being readmitted for observation as I was in such pain, and then I get my histology results which are good, my tumour is still low grade -- now I'd call that a misfire, or maybe a punch back at my attacker. I am then referred to a specialist who deals with young adults living with misbehaving low grade tumours, and he tells me that now... I need to have six weeks of daily radiotherapy treatment. This was my KO moment. Right now, I cannot punch back nor can I take any more hits. 

The whole way through the appointment with this foppish specialist fellow, as he sat uncomfortably close to me and habitually peered at me over his indie glasses in a most disconcerting manner, I was working so hard keeping my feelings buried and my minor meltdown delayed. I kept feeling my eyes filling and lips twisting, but I held everything in and kept as subdued as possible, only replying to his inquisitive 'yah?'s with a nod or maybe the occasional 'mm-hmm'. He even looked at me at one point and said, patronisingly of course, 'you going to cry, are you?' I suppressed the urge to slap him, and replied with a deceivingly patient-sounding 'No, I'm taking all of what you're saying in and will react to it all later, thank you. Carry on.'
The only time I risked speaking after that -- and let my voice betray me by wobbling and pitching upwards -- was when I said 'so... When can I go back to work?'

They have to wait for my head swelling to go down before they start this treatment, and are giving that three to four weeks, which means it will most likely kick off at the end of July. I'm hoping that my birthday on August 1st can be slotted in before, though. It would be nice to turn twenty two and not be lying on my back having my head buzzed. 

I'm so upset and feel immeasurably guilty about the whole six-week ordeal. This means a friend or most likely parent will have to drive me to hospital in Sutton on every weekday for six weeks -- that's a 1.5/2 hour journey there and back, just for a 10-20 minute zap session. It'll take out so much time in every day, and not just for me! If it were just me that would be fine, but when someone else has to make that adjustment to their days and carry me around... 
I'm also properly aggrieved because this means I can't go back to work any time soon. On our way to the hospital on June 30th (the most balls day) I'd been excitedly and hopefully clucking to my parents: 'I think I can go back to work soon! I feel okay again... Maybe end of this July!' There was a happy vision coming clear at the end of this unhappy road; it sounded like acoustic pop accompanying the clatter of plates and the whoosh of a steam wand, and it smelled of coffee... Alas, it was not meant to be. I've not suffered enough, it seems.
Luckily my colleagues/besties have been so lovely about the whole thing. Lovely in that they didn't kick off or get properly upset when I told them! The manager even shrugged and said 'no problem, you know you can come back whenever!' I plan on visiting them all way too often over the next few weeks before this nightmare begins, and only taking the minimum time to recover after the radio-nonsense is over. 

I'll lose hair. I'm alright with this actually, as I expected to lose hair when I had my first op, my entire head of hair in fact, but I was fortunate in that my neurosurgeon only shaved a strip where he had to slice. My hair in that spot had grown back nicely, all fluffy and optimistic, jutting out proudly when I tied my hair up. Then when my second op came around, it was shaved yet again and even more was taken away this time. Anyway, radiotherapy will take hair in patches apparently; obviously the area where the zapping will be focused, but perhaps in other random spots too. Here's my positive spin on this one: I finally can get that psychedelic-coloured pixie crop I've wanted since I was twelve, and I can rock any one of a dozen head scarves each day if necessary! 

The worst part is that in my mind, I'm expecting to finish this next round of treatment and I'll recover wonderfully -- only to be called up again after a while and informed that I need something else done to me which will take several more months and put me in even more of a sickly state afterwards. 

Here's the thing, my dear friends. I don't think anybody understands how truly unrelentingly empty and horrendous my life is these days. 
Actually, I wouldn't want them to. If anyone knew what I experience and feel 24 hours a day, their hearts may break, their brains would overload with mixed emotions and then of course the amount of sympathy they'd feel would overpower and slowly suffocate them. 
I've lost a lot. I forget how much sometimes, then I get the odd reminder. I kid you not, this evening I scrolled through my beloved Instagram and saw three images displaying my biggest losses in fast succession of one another; one of my favourite colleagues sitting outside a local pub drinking happily having just finished a shift, one of a friend's view of Winchester cathedral in the sunshine, and one of a newly revamped bedroom belonging to another friend who has recently moved in with a group of her nearest and dearest in the big smoke. So that's my job and my colleagues, my second home and happy place that I was dragged suddenly away from, and just the mere idea of living independently. Three things that meant so much to me, all snatched away and undoubtedly unaware of how much I miss them all. Right now I am sitting in my childhood bedroom, looking around dejectedly at all the memories stuck on noticeboards, and frantically trying to see the happy, bright future somewhere in the distance when I have all those things back. 

I'm sorry. I'll stop talking about myself now. I'll let you all get on.

I know someday everything will have worked out and my life will be so completely on track it'll be like I'm actually driving a train on a track at 90mph and the engineers or whoever will be sprinting ahead and scrabbling trying to lay the track before me as I go... Just today, nowadays, it's very hard to see beyond the hospital waiting room. 

1 comment

  1. Hi Grace
    I’m so sorry you’re still in this shitstorm. Going through so much awefulness when you should just be having the best of times.

    But if I could try and ease your anxiety about a couple of things;
    Although you might feel as though no-one really knows what you’re going through, I kinda do.
    As I said previously, I’ve been through the radiotherapy thing, and it’s really not too bad, (although admittedly you’ve already endured 2 ops in a year or so.... and not just ops, but proper in-at-number-one, super heavy ‘Top of the Ops’. And with all the associated recovery collateral damage, which’ll make things feel worse). Nevertheless, to try and put your mind at ease, I would put an operation (especially of the magnitude of what you’ve been through - twice) as much harder to conquer than radiotherapy.

    Secondly, if you’re being zapped at Sutton, you’re obviously under the Royal Marsden.
    Take it from me, these guys are the BEST! World Class Centre of Excellence.
    When I was being zapped (up at the Marsden in London) I remember these super rich Arabs being ushered in for treatment. Really. They fly in from all over the world for private treatment at the Marsden. Just a thought, would it be easier (or do-able) for you to journey up for treatment at the Royal Marsden in London?

    Anyway Grace, All the very best.
    Be strong. We’re here for you.

    All love, support and every best wish from us to you.
    David & family
    >hugs<


    PS Did you get to cuddle Caitlin?! And what of the rest of your pre-op list?!?!?!

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