Let me start
by saying this is a lengthy blog, please bear with us and it, I hope it’s a good
read but again have your tissues handy, the second ‘half’ is tough reading I’m
afraid.
Because of more recent events that we are still to bring to you, I want the
blog to become ‘real time’ as soon as possible, we are nearly there.
Well my
Novalis Tx treatment seems to have been a complete success, I’m not perfect, I
know I will never truly improve but for now, I am relieved that I’ve got an
extension on my time with my families and friends.
I never
expected to make Xmas 2013 so to be in October and dreaming of this Xmas as it’s
so, so close is truly a bonus. We’ve got a big house by today’s standards, it’s Victorian, full
of character and it feels so warm and homely especially when there are a lot of
people here, in days gone by we’ve held parties here with up to 80 people in
the house and Andy putting on the most amazing buffets produced from the
tiniest of kitchens. I had told the kids that I’ve always wanted a family Xmas here all
sitting round the huge dining room table laden with goodies, it was one of my
bucket list things, It couldn’t happen last year and for various reasons it couldn’t
happen this year either, I’m disappointed but I also think am I being selfish
in expecting two families to come over to me for Xmas, all the expense that causes them
and I’m separating in particular the grandchildren from their other Nanna &
Granddad's plus the rest of the family, Emma’s Nanna on her dad's side Lil lives
across the road from them, god I hate this condition for all the dilemmas it
gives me.
After talking
with Aaron & Emma we found a window of opportunity, the weekend of the 28th
of November, the kids could all get over! I am EXCITED!!!!!! We are going to
have ‘Fakemass’ our own Xmas. I have to get busy buying presents and scheming,
the house will be full, six adults six grandchildren! We put our huge 10 feet
tall Xmas tree up in the Dining Room, it’s going to be special…
I love Andy
dearly, he’s my rock, my frog prince but at times he can be an inconsiderate
ARSE! We haven’t previously mentioned
this in the blog but on top of a fulltime job, on top of looking after me, on
top of his charity fundraising Andy, who has been known in the past for his
need to try and right wrongs when he saw them recently found his latest bizarre
and unusual focus for his outrage, the Xfactor. We watch it certainly the
audition stages religiously, mainly to watch the ones who are funny and don’t have
a snowball’s chance in hell of getting through, its good too to ‘guess’ which
acts will make the live shows. There was an eclectic mix being auditioned this
year, Fleur, Chloe Jasmine, Steph to name but a few. For Andy there was one
outstanding voice, Kerrianne Covell, oh my this girl can sing, her audition was
‘different’ for she was portrayed as skiving off work and putting her job at
Footlocker on the line. So impressed was Simon that he asked for Kerrianne’s
phone to call her boss, he didn’t answer so he left a voice mail plea for her
not to be fired but also suggesting she wouldn’t be needing the job much
longer.
The arena
auditions came along and Kerrianne made them, it got to the last day of auditions
where the six seats were on stage for Judges houses had been filled for every
category, the last category is Cheryl’s and she’s filled all six seats, she’s
swapped some people out, there is one act to perform and it’s Kerrianne, no
pressure there then! The lady knocked them dead, Mel B wiped away a tear, Scary
Spice cried! Cheryl’s head was in her hand, the tension was clear but
eventually common sense prevailed and Kerrianne was the sixth and final
contestant for judge’s house auditions.
The Judge’s
houses auditions were hitting the TV screen, Andy was confident this would be a
‘no brainer’, his jaw almost bounced off the floor as what he felt were lesser
talents such as Chloe Jasmine and Steph were put through and Kerrianne wasn’t!!
He was outraged beyond belief.
By a whacky
coincidence Andy exchanged messages with Kerrianne on twitter, then with
Kerrianne’s Mum, a friendship of sorts
was struck and a lot of things were shared that will always remain
confidential, there was one particular issue though that Andy offered his
services to resolve and did to the families satisfaction. Andy truly wanted to
help with overcoming the injustice of the madness shown on Xfactor! Without going into detail Kerrianne’s Xfactor
contract extends to well after the show ends and that meant she was as Andy put
it ‘Commercially vulnerable’ and he became part of a small dedicated unpaid
team supporting and offering advice to Kerrianne, as part of this he was handling
booking enquiries (Still is, get in touch!).
If you’ve not seen Kerrianne watch these two 'you tube' clips, we’re
sure she is going to be in the charts soon!
Unbeknown to
me a couple of days before ‘Fakemass’ Andy drops on me that he’s secured a
booking in the nearby town of Frodsham
in Cheshire and it was the Saturday of ‘Fakemass’! To say I was ANGRY
would be an understatement!!! not at the time he was putting in to righting the
Xfactor wrong ( he needs a project to keep his mind off the stress of our
situation) but that as this in all likelihood would be my last Xmas, I wanted
it special all family together… (it will take some real crawling on Andys part
for forgiveness) and he was going to be collecting Kerrianne from Liverpool
train station & accompanying Kerrianne to her gig. I’ll add now I like
Kerrianne too, she is an amazing singer and a lovely young lady, she was in no way to blame for this (or even aware of this), my beef on
this was 100% with the ARSE that I married!
Well ‘Fakemass
Eve’ was here and it was late on when I was mobbed by five of my grandchildren,
Evan bless him I’m sure had he been old enough would have been leading the pack
to grandma but he’s still sooo tiny, he’s only 9 months old! I love
my grandma hugs, they’re all so special and stored in my memory banks. I fear
losing my memory, I’ve had bouts where its happened temporarily, all short term
stuff, but I fear long term memory loss, I fear a lot of things as you’d
expect, my biggest fear with all of this is one day I’ll end up trapped in my
own body, it’s my worst nightmare, to be able to see you all but not to be able
to hold you, or to communicate with you all, to not be able to explain my pain
and to no longer be able to tell those so close that I do love them. God I hate
this creeping killer!
The kids are
stunned by the size of grandma’s Xmas tree, the lights, the ornaments, after
the grandchildren went to bed the presents were brought out of hiding and left
under the tree by santa ;)
It’s
FAKEMASS!!! I’m up our huge dining table is laid for breakfast, I’m cooking
and still cursing Andy, to coin one of his expressions, he’s truly got my goat!
(What the hell does that mean? We’ve got no goats hehe) The kids are busy
opening presents, the TV is on in two rooms, it seems for the grandkids with TV
watching it’s compulsory that you sit within two feet of the screen and the
volume must be up in the 40’s (Adults amongst you try this and then head for
your nearest audiologist to get your hearing fixed!) Seems parents become
immune to it too, probably resigned to it after a few years of yelling “Turn
that TVdown!” lol
Late morning
and Andy announces he’s off to collect Kerrianne, he was bringing her here as a
surprise for the kids and to meet all the family, Andy’s thinking is its not
every day a TV star drops by! I’m still fuming (At Andy) but I’m busy preparing
lunch, my memory isn’t perfect these days, I’m unsteady on my feet, I’m known
to drop things without warning and I’m slower so I have to concentrate more.
Shortly
after Andy is back with our lovely ‘guest’, the kids are stunned in to shy
silence, earlier they’d been watching Kerrianne’s Xfactor auditions on the TV
and now she was in front of them.
Kerrianne stayed and joined the family as they watched a family movie
and she joined us for Fakemass lunch, it was fantastic to see my family all
around the table enjoying lunch, the laughter and smiles, I’ll keep this memory
in my head forever I hope.
Andy dropped
Kerrianne at her hotel to rest for a couple of hours before he took her over to
Frodsham, we hugged as she said goodbye & thanked me for her lunch. I’m still
not Andy's friend right now but I’m enjoying my time with the kids and grandkids.
It was an afternoon of playing games, watching TV, eating loads of sweets and
being daft, I don’t want today to end…
Andy left
early evening and took Kerrianne to Frodsham where she entertained an excited
crowd. ‘The Arse’ was home around 9.30 and the kids were thankfully still up,
my displeasure at him was evident still… Christmas is about family and he is
part of our family….
Sunday was
like Boxing Day, the kids were playing games, grandma was sorting out breakfast,
I wanted more grandma cuddles before the kids go home after lunch. Eventually
we waved the kids off, I cried openly as we walked back up our path. It’s hard
not to think this is the last time I’ll ever see them, we are due to be in
Grimsby for ‘real Xmas’ so it’s only four weeks to go! I head up to the
sanctuary of the laundry room, yes my laundry room is on the top (3rd) floor of the
house, unusual but it’s lovely for a laundry room hehe. Up here I can relive my
memories but also cry unseen.
It was then a quiet run up to Xmas
except we headed up to Vince & Denise’s for a few days, truly they and
their offspring’s (and theirs) make us feel so special AND I got to see Snow! Couldn’t
play Snow Angels but it was Snow, I love Snow.
It’s Xmas
Eve, I went to Bolton with Andy and met a dear friend Nina who lives local,
she was holding a mini get together for some friends and I was invited, I had a
lovely day; mid-afternoon Nina’s husband drove me to Andy’s office, he was
still working but came and got me, signed me in and took me up to meet his
colleagues, some like Sylvian & Craig, I’ve known for years, many are new
but it’s lovely to meet them all. I’m not sure if it was my arrival but not
long after a message came through that the office was closing early, we got an
early start to Grimsby. Val, one of my ex-husband George’s sisters has her own
house but she often stays at her mums and she often kindly let us use her house
when we were over but Andy had booked us into the Premier Inn earlier in the
year as they had a deal on, £25 a night! A bargain!.
We checked
in and unpacked, we went over to the adjacent pub/Restaurant and had a meal, I
was tired we were seeing the kids tomorrow, lunch at Emma & Bob’s, Tea with
Aaron & Vicky and of course the grandma huggers! I’m lying in bed thinking “I’ve
made it, a second Xmas!” I truly never expected this to happen.
We woke Xmas morning, we wished each other a Merry Xmas, we
hadn’t brought our presents over. Andy (Yes he’s Andy my frog prince again now,
not that I’ve forgiven him yet, unfortunately for him my memory hasn’t faded
that much yet hehe)
We got up,
showered, dressed and wandered over to the restaurant for a leisurely breakfast.
Towards the end of it I said to Andy, “I’ve got a headache” I indicated where
it was, I’m always getting headaches but this one was different, more intense,
like a nasty hangover, We walked back to the hotel it was 30 yards to our
ground floor room. As we walked down the corridor I said to Andy, “I don’t feel
right, I feel like I’m limping”, Andy was walking behind me and said I wasn’t bending
my left knee.. I leaned against the wall, Andy held me and at the same time
opened the room door. “Quick I need to sit down, I’m not right” Andy put me on
the end of the bed, I said “My arm is going Andy, help me please, please help
me” I was panicking, I knew what was coming. “Please sit next to me, I’m
leaning over” I begged, Andy sat beside me I could feel him pushing and keeping
me upright but holy hell was breaking out, I didn’t know what to do my body
began to shake, my arm was ‘flipping’ it was going ballistic” by now Andy was
dialling 999, he gave the operator all of my symptoms and details along with our location, he even
added “tell the ambulance team we are in room 24”, we were told an ambulance
had been despatched, my seizure continued, I was crying, wailing “Please make
it stop Andy, please, my arm, please hold it”, I was beginning to feel worse, then
my arm just stopped working, it was limp, I’d lost all use and feeling in it, the seizure continued. I
said to Andy, “Andy, I’m going, I’m going” he was holding me and crying, “Please
don’t, stay with me hunny, please don’t go”, I could only respond, “I can’t stop
it, I’m going” (I’d forgotten to add the words ‘To pass out’! – I didn’t). At
this Andy was dialling 999 again asking where the hell the ambulance was, to
compound things the ambulance operator could not find our location on their
database! Andy was going nuts (so I was told later I was still in seizure) the
operator was apologising, “I’m sorry” she said, Andy known for his calmness but
not in this instance replied “you will be! Get that ambulance here NOW!” My
seizure was beginning to fade. By a miracle the door knocked, Andy leapt at the
door and opened it, two paramedics and a very startled hotel receptionist were
there, he rushed back to my side telling the emergency operator the team were
here and hung up. The seizure had lasted around ten minutes, felt like three hours!
Andy has it
memorised now he explains who I am, my age my condition my symptoms, and then
stepped back as the team examined me, at this my left arm usage started to come
back slowly. “We need to blue light you into Scunthorpe Hospital, they have a
trauma unit, Grimsby won’t be able to deal with you” Andy said he’d follow on
in the car, Scunthorpe is probably a 30 minute ‘normal drive’. Andy left me to
the paramedics, he gathered my belongings and headed to the car, the Ambulance
driver as he headed to his cab asked Andy if he knew where he was going, he
just responded “I’ll find you, just go!”, the ambulance driver added “Don’t try
to keep up with us” Andy said he knew the drill and would let them go.
The seizures are a frightening and also painful experience, they also leave me feeling 'drained', so far when I've had them I've remained conscious throughout I am aware of what is happening to me at the time.
I was in
safe hands, It turned out Andy used the journey and using his hands free kit to
call Emma & Aaron, he tells me he was crying as he told them, at this stage
we didn’t know how serious this was, 'we didn't know if this was it', we hadn’t encountered anything like this
since my symptoms first presented themselves and then it was nothing in
comparison to what I’d just encountered. It turned out the words “Andy I’m
going” had truly shook him up, bless him, I know how I feel, but we often
forget or don’t understand how our loved ones are coping or dealing with
situations like this.
I feel
blessed that on being admitted I was being handled by an amazing Doctor; Doctor
Amir Waheed, he was outstanding. He was thorough and to the Staff Nurse’s
amazement and despite her soft protests at the time was adamant I was to be looked
after by one nurse throughout my time here, her! At one time after a scan she
suggested I be moved to what they called the (adjacent) trolley ward, lol “If
Julie goes into there you are going with her”.. She wasn’t impressed but he was
adamant and had his way, we both moved to the trolley ward hehe.
On review I
was moved up to an assessment unit, where I was checked out and saw two
doctors, the more experienced had actually worked in Liverpool. His judgement
was it was difficult to assess me as although they had a scan they had nothing
to compare it to. He also felt as I’d stabilised and was showing no ill effects
there were two options, 1) to keep me in overnight for observations or 2) to
discharge me, I felt fine, It's Xmas Day & I don’t want to be in hospital so they wrote up my
discharge notes. Andy spoke to the Doctor outside, he still wasn’t convinced me
going ‘home’ (to the hotel) was for the best. He (The Doctor) kind of confirmed even if
anything further happened here there wasn’t going to be much they could do for
me, he suggested It was better to be near my existing medical teams. Andy told him we’ll
travel back tomorrow then. The Doctor said that was a wise move.
Andy called
the kids and updated them on our drive home, I was exhausted. Our plans had to change so Andy
asked the ‘grown ups’ to bring all the little legs to see us at the hotel early
the following morning to minimise me having to do anything. I slept heavily,
the seizures are draining to say the least, I’m exhausted but I must summons up
the energy to show enthusiasm for being with everyone, I’m still very
frightened, I had a nice surprise unbeknown to me a friend, Tara, had been in contact with
Andy and he’d arranged for her to drop by the hotel too, it was nice catching
up with her and her daughter.
The kids
came, lots of grandma hugs I wish I could be more enthusiastic and actually
play with them but I’m exhausted physically and mentally…
We left early,
we had to see mum and dad and Andy wanted me home for obvious reasons. Our
visits were brief or cancelled, I suppose I should be grateful that at least I’ve made it through a second Xmas,
seen the kids and had Daddy hugs but somehow I feel robbed. Hours later we were
home but have the seizures travelled with us? I remain afraid as I close my
eyes, my head on my pillow.
