As I sit here looking at the white screen, the curser appears to be flashing almost impatiently at me. Today I’m going to try and write as much of this as I can without the dictaphone. Where to start? Well at the beginning silly! Oh there she goes! Julie Andrews 🎶 Let’s start at the very beginning 🎶 that bloody film haunts me or should I say my Mothers Hilda Ogden like singing does! Oh it appears I’ve digressed somewhat already, this is going to be an interesting blog! Hahaha Back to it, yes, so on 31st October I had an appointment to see some Boffins at a Transient Ischemic Attack clinic at the Royal Victoria Infirmary in Newcastle. It was an appointment to gather information about the amount of TIA’s I’d had in such a short space of time and how I was still here and recovering so well, or so I thought and was led to believe. I sat in the waiting room and I had the now usual anxiety of, are they going to be utter arseholes and patronising twats like the god awful stroke physician Dr Louw, yeah I’ve decided to name and shame the bastard! When my name was called I looked up to see an immaculately dress gentleman, suit, waistcoat, tie and cuff links, my tummy did a summersault and I thought, oh god no, please don’t be an arsehole to me, not today, I’ve had approximately 2 hours sleep due to the pain in my head and I’m growing progressively tired of putting up a fight. I raised my hand and smiled hopefully, he walked towards me and gently ushered my Mam to one side and said, Madam, I’ll do that, follow me and with that he released the breaks of my wheelchair and proceeded to push me down the corridor and into his room. Now I’ve had dealings with Boffins before with my Autoimmune and this guy looked and behaved like no Boffin I’ve ever come across. Once in the consulting room he introduced himself, oh he was no Boffin, the appointments department had mixed the dates and letters up, this gentleman was the Neurovascular Surgeon I have waited so very long to see, the gentleman that I’ve fought my fucking arse off for the best part of this year to meet. Oh no, he was no Boffin and I was oh so not prepared for the first time in almost 12 months …… Bloody TYPICAL!!
Still somewhat in disbelief and suckering suckertash-ing at myself for not having the chance to be uber prepared, he spoke the words I have hoped to hear for so long – If you don’t mind I’d like to push everything you’ve been told to one side and I’d like to start from the beginning (shut it Julie!) and try to identify how this has happened, there’s been far too much focus elsewhere. Well, I couldn’t speak, my throat was strangled by what felt like a tangerine sized lump and my eyes pricked with tears, all I could do was nod. He asked if I was ok, again I could only manage a nod but my Mam said that’s all she’s ever wanted to hear. He said great, let’s get to work then. Again he floored me when he asked if I’d been in a car or motorcycle accident, had I had a blow to the back of my head, had I had a boating or swimming accidental 4 to 6 weeks prior to mid December. Can you remember boys and girls, when I was called absurd and preposterous when I asked if I could have done it saving Dylan, remember that?! Well not one of them took me seriously and completely brushed it off and it was not once mentioned in my notes! That’s when he asked for a time line and did some background history. After 10 or 15 minutes he stopped and said, wait here, I’ll not be a minute and off he went. My Mam and I both looked at each other and she whispered, where’s he gone!? I had no idea! He came back a short time later and said, right Dr Thomas is seeing my other patients, I’ve cleared my morning clinic, we have a lot to discuss and I feel it’s my job today to clear some things up and give you the time you deserve because these Consultants have got some things so very wrong. Not just anyone can read a MRI or MRA scan and that’s very evident today. He wheeled me to his desk and went through every scan I’d ever had and showed me all the imaging, he explained every one and drew diagrams, he didn’t hold back, quite the opposite, he threw every one of them under a bus, a double decker bus at that!
So, he confirmed I sustained my injury 100% from saving Dylan from the swollen river, the force, the action, the weight, all contributed to my left brain stem being pulled and stretched causing a tear and on the morning of 14th December, straining my neck whilst driving ruptured the tear. You’ll all remember me presenting this theory, don’t you? Well, turns out I and possibly Mr Price who I never saw again, were bloody right! BUT!!! I have had NO bleeds on the brain AT all!! I’ve not had 3, count them, 3 rare types of strokes. I’ve had ONE head injury, ONE brain haemorrhage and yes, countless, exceeding 10 TIA’s as the blood flow washed along tiny healing clots. Are you all shocked?! Are you all shocked that for 11 months they have, and I quote “trying to hammer a square peg into a round hole” Yes, that’s right, they GUESSED! They misinterpreted every one of my scans or simply just didn’t know so they tried to pigeon hole me and treat me generically and hoped for the best! Oh and there’s more, don’t go away!
Can you remember back in March this year I was blue lighted to dreaded Cramlington Hospital and rushed into Resus with camera crews chasing us etc? Remember how I had to make the life or death decision to be Thrombolised or not? My chances were significantly lower than 50/50. That’s why Dr Arsehole Louw shut his trap quickly because he knew, he knew they’d guessed and took a significant risk with my life. They rushed me into CT, I’ve seen my scan and had it explained, there’s absolutely ZILTCH on it, nothing, not one fucking thing because this type of injury can not be seen on a CT scan. It’s thought that a tiny pinhead stationary healing clot was causing some confusion in my brain or it was my body experiencing dystonia for the first time, not a stroke or a clot hurtling towards my heart and lungs. Nor did I have a third rare stroke the second night I was home, again they CT scanned me, you can’t see this type of head injury etc on a CT. What was happening was the after effects of my head injury was still presenting itself. I should never have been sent home and I should never have been sent home with no provisions and care put in place! When I told the Neuro dude I’d been Thrombolised he said, did anything happen 6-8 hours afterwards, my Mam said yes, she went into shock and they hooked her up to fluids and all sorts. He nodded and said because you were over treated for something you do not have. My family are raging and feel it was all an elaborate show for the cameras and playing life and death with someone they couldn’t explain or knew what to do with. I don’t know what my theory is but I can tell you now, they were playing god that day! A Neurologist should have been consulted in January but they definitely should have been consulted in March before the treatment had even been administered because I potentially could have needed surgery never mind died at their hands.
Ever since I became poorly, I’ve always said my left side didn’t feel right either but it always got dismissed like everything else. They always said it was because my right side was paralysed or had little feeling etc WELL, wait for it, my left side has been affected. You see, the top halves of your brain effect opposite sides, my upper left side of my brain is damaged but it presented itself on my right side of my body but underneath your brain, left affects left, right affects right and I have damage and Ischaemic lesions to my left Thalamus, left Tempero-Occipital Lobe, left Cerebellum and left Pons. It also affected the artery behind my ear causing my loss of hearing and the audio sounds I experience now but I’m hoping it’s a sign it’s repairing itself. Here comes the science, the Thalamus is it’s very own structure within your brain, just above the brain stem between your Cerebral Cortex and midbrain, it has millions of nerve connections and it’s your relay motor and sensory signals. Remember when I said that back in December 2016, I could barely see and had pinpoint vision, well that was thanks to my Occipital Lobe. The Pons is your message centre, it relays messages from the Cortex and the Cerebellum which is why my messages and transmissions weren’t and don’t get passed along as well. It also plays a big role in sleep and dreaming. I’ve never dreamt since my accident, mind you I barely sleep, some of it is through worry but not all. I had a nightmare on Monday night that I was drowning but you know what, maybe that’s a good sign?! The dreaming not the drowning! The damage to my Cerebellum affects things like, emotions, impulsiveness, autopilot, unconscious memory, so, thought processes, memories and interests etc. So I can be a bit like Doug on Pixar’s Up – SQUIRREL!! It makes concentrating on a film really difficult amongst other things. I don’t really remember much about the past few years because I have memory loss and short term at that! My Temporal Lobe is also damaged so if my wonderful friends didn’t keep in touch, I’d quite happily sit there oblivious without a care in the world and I must add, lonely. I’m far from a stupid or uneducated person, I’m just living in my own tiny bubble right now and you’ve no hope of me remembering to ring or text you! Hahaha I’m also learning to read and write again. Jane the cognitive and language therapist comes once a fortnight and gives me homework which I love but by god, the simplest tasks are so incredibly difficult for me, that’s when I realised what a pickle I’m in, that’s when I realised the image on the screen of a brain with grey/white patches isn’t just a picture, it’s me, it’s my brain! I struggle to recognise people sometimes, I know that I know them but I just can’t think where or I recognise them but can’t remember their name so if you see me, please stop & say hello and if I haven’t replied to your text PLEASE text and remind me and PLEASE keep in touch cos I’m not ignoring you! Take my friend Jayne, I’ve known her for just over 2 years but I’m forever calling her Tracy. I don’t think I’ve ever done it to her face yet but when I’m talking about her (now hey, not like that! Lol) I have to consciously say Jayne and not Tracy, mind you, ask me the date and I’ll not know but I’ll say the year is 2014! I have no idea, it wasn’t a memorable year from what I can remember and that isn’t much! Hahahaha Well Jane the Cognitive lady was here the other day and she said think of a funny story about Jayne and see if that works. So Jayne, I now have that imagine of you training Ozzie on Seaton Sluice beach running backwards and falling into a giant hole in the sand! Hahahaha I think it might just work you know!
The Neuro dude did deliver some devastating news and the few that I’ve been brave enough to tell have not hid their tears and neither have I. A long with all these long technical words is another word – Infarction which means obstruction of blood supply to an organ and or region of tissue causing localised death of that tissue. So when my left brain stem eventually clotted to heal, it cut off the blood supply to that part of my brain as well as a Haemorrhage. I’ve lost that part of my brain along with some of the things it controlled and I’ll never get it back, it’s gone. To sit there and hear those words, the words to describe what it’s previous functions were and why I struggle with them now or have lost them completely, well, I can’t quite put that one into words I’m afraid. I’ve always felt there was some part of me missing or a part that needed switching back on and it turns out there really is. To see the damage on the screen was just beyond devastating. It’s not something I can brush to one side and merrily continue to skip along. I’m not dwelling or focusing on the negatives, this shit is real and I will challenge ANYONE who dares say, but look at the positives, cos believe me, there’s no one on this fucking planet that’s more driven and forwarding thinking than me so please keep that shit to yourself! It’s not welcome here and I deserve the right to grieve that loss, though, it hasn’t happened yet like but you know! My eyes are still very much on the prize. It’s going to take time to process and digest and it’s going to take time to deal with it emotionally and it’s going to take time to hopefully prove them all wrong yet again! On to the good stuff! He got me out of my wheelchair and held my hands and walked backwards so he could watch me trying to walk and keep my balance, he was intensively watching and pulling a puzzled face, when we sat down he said, you shouldn’t be able to do that and smiled broadly, just how hard have you worked? My Mam said, god she never stops! He looked at me and said, and you never went to Walkergate Park Rehabilitation Centre? I shook my head and said, nope, just me and Val at home. He grinned again and shook his head in turn, remarkable!
We sat there in that room for just over 2 hours. His parting words to me were. I’ve never met someone so forward thinking, your eyes are firmly fixed ahead and your determination is to move forward and I believe you shall. I also believe your recovery will continue for sometime yet and we must continue to support you. You have a lot to process today but take this away with you. Some of your injuries I see once every 3 years or so. I believe you’ve been told similar but I’ve never seen a one of you and nor am I likely to for the rest of my career and lifetime. You’ve beaten the odds more than once, this head injury is a one in one million chance of ever happening and it is a one in one million chance it’ll ever happen again, you must go home and SLEEP, you are safe and if you can achieve this then I believe you WILL walk your dog again but not near any swollen rivers please!
Did I sleep? Did I hell! Partly from mulling it over and trying to digest everything but also because I’ve been told so many different things. I do believe him, he backed everything up, he explained everything, he even showed me evidence but what if he’s also wrong?! I’ve trusted many before him and luckily lived to tell the tale, though not expected to have done! I’m still taking it all in I guess and I’m sure in time I’ll lay down and sleep fitfully, here’s hoping!
So what’s the scores on the doors!?
Rare Strokes ~ 0
Bleeds On The Brain ~ 0
Blood Clots ~ 0
Head Injury ~ 1
Brain Haemorrhage ~ 1
TIA’s ~ 10 ++
CUDDLY TOY ~ All together now, Awwwwwww!
After all the years of joking, I really am, one in a million and I have a Neurovascular dude who’ll back it up!
12 thoughts on “Time For A Recount ….”
Jesus Christ Liz. This is astounding. I bleddy love you and wish you everything good and hope one day we’ll meet and laff laff laff.
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Aww god love you babe! Thank you so much! It really does mean a lot that you took the time to read it & yes, meeting, how epic an adventure that would be! Lots of love babe ((Hugs)) xxx
Wow that’s quite the explanation Liz. Keep pushing on… Head up…
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Thank you & thank you for taking the time to read it 😃
That bloody hole!! Lol xx
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LOL! 😂 Even the other Jane laughed! Hahaha 😂 xxx
Liz I am pleased beyond words to read this. For you to finally be taken seriously and listened to, and for him to be so honest about the failings of his peers. My girls asked me what I was reading tonight so I told them what happened (a version suitable for a 4 and 6 year old). They both said how sad it was that it happened and wanted to send you hugs and kisses. Colette will pass them on to you. Big hugs and keep facing forward gorgeous girl xxx
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Aww thank you Sarah, it’s taken awhile to reply , it was Year yesterday, a whole year, I think I’m in shock just about that, though I can’t remember much at all! Xxx
Hi Liz… wow go you… your last blog has had me in tears but tears of can I say joy? At last you have gotten the answers you have been asking for.. And yes I agree with the boffin doc you are an incredible women and I can’t wait for the photos of you walking your boy again (no river walks please)
Keep going and keep fighting.
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Thank you so SO much babe! It’s taken a little while to reply as I knew my anniversary was coming up, it was a year yesterday. I can’t wait to take Dylan out again, not on my scooter but walking him in the woods & on the beach etc Ps. Sorry about the tears! ((Hugs)) xxx
Latecomer to your blog, but so glad to hear you finally got ANSWERS! Now for that determination of yours to help you beat the odds and walk again. I believe you will!
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Awww thank you so so much! That’s truly made me smile this morning! Sorry for the delay but the dreaded flu has hit our house despite our flu jabs, I’m getting off lightly for having the vaccine but it doesn’t feel like it! Hahaha Thank you for taking the time to read it & thank you more so for believing in me! 😃 xxx