Enough now….

Dying is a natural, but emotionally uncomfortable event for patients, families and professionals.  There was a time in the middle ages when dying wasn't a big deal.  It was both accepted and tranquil, something that was a communal and public event involving ritual and mourning.  But attitudes have changed in 1,500 years.  We speak of death in hushed tones.  We close our eyes to it, hoping that by pretending it doesn't exist, it will go away…. We shelter our children and pretend a loved one who has died is 'sleeping'.  The medical community views it as an affront to their professional competency - something to be fought by every available scientific piece of gadgetry.

This has been proven with poor old GF.  We are coming up to week four, of her journey.  After going in and speaking with her Consultant (I use the term 'speaking' very loosely), he was an abrupt man, who came in hurriedly, and took a quick look at her, said she had made progress (this was diagnosed by her opening her eyes, even though she is now blind) and that they would be 'actively' treating her.

"And what do you mean, by 'Actively' treating her?" I questioned
"She has made progress."
"I am assuming by that you mean that she opened her eyes?"
"Yes, she opened her eyes, and so that is progress."
"Is it?"
"Yes"
"When did you see my grandmother last?"
"This morning."
"And when did you see her before that?"
"I haven't because she has just been moved over to this area."
"She opened her eyes last week, the day after her stroke.  She has made no other 'progress' since then."
"I cannot assess her without a baseline first."
"Yes, I understand that, but surely as she has only been moved 200 yards down the corridor, but still on the same ward, can you not start her assessment from when she came in?"
"No, because it is not my area."
"Are you joking me?"
"No I am not."
"And so, you are making an assessment for how long?"
"24/48 hours."
"Ahhh, you mean the weekend, when you will have skeleton staff on, and we won't see you until Monday then."
And so the conversation went on, neither of us backing down from the fight.  Mine for GF, and him for his 'rules and regulations'.

She is still paralysed, blind, unable to swallow, incontinent.  Her veins are becoming harder to keep any type of canular in, and so fluid is haphazard in it's continuity.  For the third time, she has had her NG tube removed (admittedly - she yanked the last one out….), however, today we had a call from the hospital to advise us that she was being very sick and they think that she has aspirated her feed into her lungs - this has resulted in her having yet more intravenous fluid, and antibiotics.

I feel enough is enough.  Am I cruel?  No I am not.  Cruel is keeping her in this state of no mans land.  Neither living, nor dead.  Just somewhere in-between.

When Craig and I went to visit GF on Sunday at 6.30pm , the lady in the bed next to her had died at 5pm.  The body was still in the bed, with the curtains drawn round.  It was literally 'deathly quiet' on the ward, GF was in her usual state of coma, with intermittent rambling and eyes bulging wide open, searching, but not focusing.  This is not something I want the girls to see, not because I want them to fear death, but because this is not Granny, and memories at such a young age are impressionable.  Fleetingly her eyes opened.

"Look!" Said Craig, "The lights are on!"
I stood up, directly in front of her, taking her hand I spoke.
"Granny, it's me, Samantha.  Hello Sweetie! It's okay, I'm here…"
Craig stood by my side.
And then Granny opened her mouth to yawn, her blackened tongue waving without control, and she made an involuntary gasp for air.
"JESUS CHRIST!" said Craig
I turned to look at him, he was on the floor behind me…
"What are you doing?" I said
"She scared me to death! I looked into her soul then!"
"Oh great!  And you hide behind me! Bloody typical!"
"Well I wan't going to be in the firing line!"
"Firing line of what exactly?"
"Whatever was going to come out of her mouth!"
"For gods sake you idiot! Get up!"

And we laughed….  You see? Even in times of death (albeit not GF's), there is life. Thank god. x x x

Pippi Longstocking Is Coming Into Your World….

For Megs first operation, we had to be there the night before.  This was so they could do baseline observations on her and check she was 'tickety-boo'.  Walking down the long nightingale ward into the HDU area my eyes were drawn to the poorly children.  Kate, her assigned nurse was very kind, and efficient (believe me, when someone is going to be looking after your child after they've had brain surgery, you don't want a faffy-wishy-washy-airy-fairy….).  We were shown all around the ward and made to feel very welcome, but it didn't make it any easier.  I held it together for all of 10 minutes, before bursting into tears, telling Kate "There are so many really ill children…." (state the obvious why not….idiot!).  Looking back,  I realise it was such an awful time that I couldn't even contemplate that one of my own children was 'really ill'.

She was first on the list for surgery the next day, her consultant said, she had waited long enough for this operation and so would be first in!  A student nurse came and asked us if it would be ok if she observed the operation as she had never seen this particular procedure done before, she was a very chatty and personable young girl, and of course we said she could.  Then before I knew it, the 'team' came to collect her, and we all walked to the operating theatre.  That walk down the ward is one I have since done many times, but the first time felt like we were going to the gallows.  All I needed was a drummer and some sombre music (and no, I don't mean Phil Collins…).

If you have ever had the pleasure of seeing your child go unconscious from an anaesthetic you will know that it is a terrible moment.  And the walk away from them, leaving their life in the hands of someone that you barely know, let alone understand most of the time, is one of the bravest things a parent has to do.

Craig held her hand, and when she 'went' - her eyes were still open, a fleeting look of panic crossed between us both, the Anaesthetist obviously used to this reassured us that everything was fine.

"Please take care of her.  She is very precious." was about all I could manage, before backing out of the door with Craig, tears blinding me so badly I had no idea where I was going, and so I hid behind the door, and cried huge heaving sobs into Craig.  Kate (a veteran at taking parents to theatre), came prepared with tissues in hand, which was a good job, because I was joined to Craigs chest with a suspension bridge of snot and tears.  Mute with grief, I was still glad that nobody else had seen my heartache, and stood and blowed my nose, and wiped my eyes, and Craigs top….. when I finally turned round to go out of the door, I realised I was standing opposite the operating theatre staff station, where there were about seven members of staff looking at me, every one of them smiling and asking if I was alright.  "I'm fine!  I'm fine! Sorry!" I said, like a demented mother, cringing at the thought that they had just witness my most vulnerable moment in life.

Kate said that she would give us a ring when Meg was ready to come back from the recovery room.  It would be some hours yet, so we should go and get something to eat, and have a wander round, to take our minds off the operation.  We went for a walk into Birmingham, had some lunch, then came back to the Ronald McDonald Accommodation that had been provided for us, we read and read, and read some more, watched tele, tidied up, washed up, went for a walk, and then when we could wait no more, we went back to the ward to wait by her bedside.

When the phone call finally came, I couldn't get to the theatre quick enough.  The relief that she had actually made it through was overwhelming.  She was complaining of ear-ache when we got there, and they had given her some very strong painkillers to help.  Her pain score for her head was a 3/10 - a miracle!  "I have no headache!" were the first words she said to us.  She was relatively 'tube free' considering, and they hadn't shaved her head.  However, she did look very pale, and the large bloody saturated patch on the pillow was an indication of what had gone on.  Going back into HDU was not as calm as the rest of the ward.  She was on 15 minute observations for the first eight hours, and so even if she wanted to sleep the anaesthetic off she couldn't.

Whilst they were settling her in the Student Nurse came to see us, eyes as wide as saucers and obviously very excitable from seeing her surgery….
"Ooooohhhhh, she's gonna be sore!"
"They didn't 'arf have to force it down!"
"You should have seen them drillin' into her head *pained screwed up face* stuff spurted everywhere!"
"It was AMAZIN' - but god bless 'er, she's gonna have one heck of a headache!"
"….AND there was looooooaaaaadddds of blood, ugh!"
At this point, Kate very diplomatically asked her to see to another patient.  I howled with laughter and Craig was a paler shade of green….

It wasn't long before the surgeons came to see us.

"Everything went ok.  We had to use Magnetic Imaging Guidance to get the shunt catheter in place, as her ventricle openings were so tiny.  When we drilled into the skull, the fluid just shot out, so we know that her pressure was very high.  It couldn't go in the normal situ as it was too dangerous to attempt that, we had to go where the ventricles were bigger.  She will be bruised, because feeding the tube down under the skin from the skull into the stomach was very difficult.  Her body is very fibrous from the Turner Syndrome, so we had a bit of a battle.  This is not an operation that we would want to repeat without there being a definitive reason, I will be around today, so will keep an eye on her progress."
and then he went.

Kate and her team were so lovely with her, I was so grateful and humbled by their kindness shown to my daughter.

About an hour later, Meg was seriously complaining of ear-ache! It was worse than the surgery, and when I looked at it, we could see fluid coming out of it.  I called Kate over to see if it was normal.  She in turn called the Consultant to come immediately and have a look - the last thing they wanted to see was CSF leaking out of her ears…..

This was when they realised that they had spilt Betadine into her eardrum, making her permanent perforation even bigger.  No wonder it was sore!  More painkillers were requested.

Five hours after surgery she had perked up a considerable amount.  I am always amazed how children bounce back so quickly….  She wasn't allowed to sit up for four hours after, and then it had to be a very gradual increase to get her into a sitting position in the bed.  Once she had balanced herself out, she was desperate for a Chicken Wrap, which the kitchen sent up for her!

Not being allowed out of bed for 24 hours, she settled down for the night.  Craig and I just about getting enough courage to look at her scar.  Separating Megs hair, Kate showed us where the incision was and what was where.  My stomach was doing back flips, Craig was steely interested - engrossed in the mechanism of the shunt, where as mine was in amazement not in the technology, but in the beautiful plaits her Consultant had put in after surgery…..

Together GF and I are united in having - Scrambled Egg Head!

Ok, so mixed in with this historical blog, I will be posting 'present day' ramblings, this is mainly down to the fact that:
a) I have too much going on at the moment
b) I have too much to say
c) I have too much to write
d) My brain has started to turn into scrambled egg trying to retain bits I want to say!

Talking of 'scrambled egg brains' (sorry GF), I had a meeting with her consultant yesterday.  She is of course still hanging on, desperately tired of life, undignified and exhausted.  The meeting was OK, and going meant that my mother didn't have the stress of the 'palliative care' conversation.  For me, GF 'left the building' when she had her first stroke, even though she was fine and independent, the Granny that I knew had gone, replaced by an Alien-Sweet- Biddy- Imposter.

"How dreadful!' I hear you cry… but it's true.  On many occasions GF's sharp tongue and usually a slap (for me) reminded us of her mad personality.  Celebratory moments have always been met with "What do you want to do that for?" closely followed by an eye roll, finishing with and head-up 'tut'.

"Granny, I've got something to tell you……"
"I'm pregnant!"
"Humph! What did you want to do that for?" *rolls eyeballs and tuts*

"Granny, Craig and I are getting married!"
"What do you want to do that for?" *rolls eyeballs and tuts*

Leona and I were always the 'ugly sisters' - this was reiterated on many occasions. (No comments required on that line please….)

We have been tutted, slapped, ordered to do things, and completely abused by GF, but we love her dearly for it - definitely payback time for everything she has done for us over the years.

However, tonight when I went to see her, she had one eye open, and although she can't see out of it, I don't think she can focus, she is definitely tracking something….whether it's the light, or sound, but it stops half way across, letting the eye go still and continue vacant.  Her mimicking ability is quite good, and rambled everything I said at a hundred miles an hour, she was good fun. That said and done though, she is still paralysed on her left side, with very little movement on the right.  Tonight she had a feeding tube back down through her nose (she hates them and keeps yanking them out) and was back on oxygen.  For the first time since the stroke, I didn't hear her try to cough up secretions.  We can be thankful for what sounds a small mercy, but actually in the grand scheme of things, it is what probably will kill her off.

She is definitely calm and comfortable.  Holding onto either your own hand for dear life, or Ivys Taggi Blanket, which she is loving.  There was no recollection of my name, or even who I was, she was excited to see Craig, but again, couldn't say his name, and continued to feel my ring finger for my diamonds.  Before the stroke I would have definitely said, she was doing it to differentiate  between my mother and myself, I am the only one in the family that wears rings, but after tonight, I think she just liked the feel of them…..

Did I feel sad tonight after seeing her?  Not on your nelly!  She was super fun, and quite responsive.  Not in a lucid 10 minute conversation way, but her eyes were open and she was rambling on for a good 15 minutes about absolutely nothing - , chat, chat, chat, chat, chat, squeeze hand to death, chat, chat.  I told her what a good girl she'd been today, because there was a RED STAR chart up by the bed, "You've been a good girl Granny!"
"Been a good girl" she tried to say
"good girl… good girl… good girl…"She rambled and repeated
Then I told her she could put her one arm down that she was holding my hand with, whilst she was doing this she shut one eye and gurning away like Olive's other half….
"Let's just lay this arm down Granny or you'll end up with bigger muscles than Popeye!"
At which point she tried to smile and laugh, but as she has no muscle control ,she pulled a fabulous face and we both giggled in our own ways…. same meaning, just a different expression.

It is truly amazing how you can communicate non-verbally.  And how a damaged brain can start to re-fire.

Today was a good day, tomorrow may be different, but for now, I'll take the nonsense chatter and relaxed manner over the harrowing last 14 days in a flash.

Living she may be. Just. And whilst she's not in distress or pain, well, that just makes me smile x

We love you GF, Sleep tight! No snoring! Foghorn!

Guide Dogs For The Blind.

It was a different journey to the hospital the next morning.  Usually the drive can drag, and I manage to lose myself somewhere between Bilton and Binley Woods, before hitting the busy roundabout taking you to the turning to the hospital…… There was nothing extra ordinary I can remember about it, except that it was completed in the blink of an eye.

Making our way up to the Adolescent Unit, Meg was shown to her very own room!  She was of course  delighted with the 'en-suite' and finding out the TV came down to the bed, meaning she didn't have to sit in a chair dangling her feet over the edge nearly made her combust with pleasure!  Amazing how different our mindsets were that day.

Bang on 8.30 am, she was taken down to have an MRI.  The results of which didn't come as quickly as the journey to the hospital did, it probably was about half an hour from start to finish, but my god, did it feel like an eternity.

There was no tumour.

The relief I felt then was like nothing else I'd ever felt.  Meg was booked in for a CTV Scan the next day, this is where they pump a dye straight into your vein straight out of the 'Carry On Screaming' film set, I almost expected 'Oddbod' to appear behind me at some point.

Again, this also came back fine.

On day three, she had a lumbar puncture.  Even with my 'hardcore-no-sympathy' personality, I couldn't face staying in with her, and so Craig stepped up to the mark in being a superb supportive daddy, and whilst I fell to pieces outside in the corridor -  Meg was having a lumbar puncture party - calmly discussing her relief in putting some decent Jack Wills pants on that morning as opposed to her usual 'comfy' M & S pants.  The Consultant, Nurses and her making fun of Craig who had no idea who Jack Wills was and 'what was she doing wearing his pants!'

This result showed that the pressure in the fluid around the brain was too high, and that she had a condition called Idiopathic Intracranial Hypertension.  Probably caused by the Growth Hormone, and very rare.  She was put onto a drug called Diamox and released back into society a couple of days later.

The side effects of the Diamox were horrendous, and the pressure still remained high.  Her optic nerves were swollen with the fluid squashing onto her brain, and she was in definite danger of going blind.  After 6 months she went to see a Neuro Surgeon at Birmingham Childrens Hospital and it was decided that she would need a shunt to drain the fluid from the brain into her stomach, this would be a permanent fixture, but hopefully she would have some relief from the horrendous headaches and dizziness that had stopped her from living life to the full for the last five years.

 I am lucky to have a daughter who is so very much more braver than anybody I know.  I have drawn strength on many occasions since from her courage.  She has shown me to not fear medical procedures or the unknown, by always being so calm. I am not sure I would always be as positive if she was as hysterical as what you would expect from somebody being in the same situation.

Daisy must not be forgotten in all of this.  She has a quiet concern for her sister, and knowingly can assess Megs health within a millisecond, but at the same time, can make us all cry with her unique gift of expertly timed humour - diffusing our grief and anxiety in a flash.

When I had to explain to her that Meg was going into hospital for a while and that I wouldn't be here either, I was nearly close to tears, my voice quivering with nerves I started to justify why she would need such a serious operation.

"You know Meg has a problem with the fluid around her brain?"
"Yes."
"Well, she's going to have an operation to put a tube into her head and into her tummy."
Her little face showing concern, and trying to simplify the magnitude of the circumstances, I said,
 "It is quite a big operation, but if she doesn't have it, she will go blind."
Her eyes widened, a split second smile flickered across her face, her hands automatically and instinctively went up in a silent prayer pose….

"Does that mean we'll get a Guide Dog puppy!"

Please stand back from the platform edge…..

After Meg had started to take her Growth Hormones for two weeks, she started to have severe migraines.  From never having had any before, I did seem to think that this was more than a coincidence.  At first, it was put down to being congested (having Turners meant that her tubes are tiny, so normal colds were always an issue, imagine every time you had a cold it would last for weeks, you could NEVER clear your nose, and it would immediately go into your ears, something everybody else can shrug off and put up with can quickly escalate into a miserable month of being proper poorly).  We rang the hospital, and were asked to go in for a check up.  It was decided that she would have to come off it, and re-start in two weeks on a lower dose.  She continued to have debilitating migraines on a regular basis, and everybody just assumed that it was just 'bad luck'.  A plethora of medication was tried to suppress, and relieve her symptoms, but she was not right for many years.

It was one Friday evening three years ago, that she came into my bedroom:
"Errm Mum?"
"Yes?"
"I keep losing the sight in my eyes, not all the time, but every now and again…"
"You've probably got some fluff in it or something, go and wash your face, it'll probably sort it out." (isn't it amazing how washing your face, or splashing some cold water on it will CURE everything!)
"Okay, night."
"Night."

The next morning, I asked if her eyes were better.
"Not really mum, it keeps going funny."
Perhaps it was the 'aura' that everybody kept telling us about with the migraines?

I decided not to take any chances, and took her to A & E to our nearest hospital.  She was monitored, they looked in her eyes, and said…
"She seems ok, probably just migraine."

And we were discharged, just like that.

On the Sunday, her vision loss episodes were getting longer and longer, and her headache was at a level 8.
I rang Arlene on the Monday and asked her advice.  Meg was usually a hard nut when it came to her pain level, she had had many accidents over the years, (mainly by her running into stationary items, such as trees, cars, boats…. She even managed to cut the circulation completely off in her wrist by tying a hairband around her wrist and sleeping with it on all night - in the morning, her hand looked like   a marigold glove blown up and sprayed purple, and actually, that wasn't the first time she nearly lost a limb, she nearly lost her finger, when the end of it exploded like a cartoon cigar - but still she never winced or cried) so for her to be complaining of severe headache, which wasn't being pacified with any pain relief, I knew was bad news.  It was decided I would get a second opinion at The Eye A & E (situated in the same hospital).  So we made our way over and waited…. and waited…. and waited…. FIVE hours.  We were finally called in at 5.00 pm.

I knew something was amiss when the Opthamologist frowned after looking at the back of her eyes and sat back, and then looked again.  Twice.
"She has some swelling around the optic nerves on both eyes." he stated
"Yes, and?" like I had a bloody clue what he was talking about….
"I just want to scan the eyes."
"Ok."
We were ushered into another room where they did an ultrasound over her eyes. I didn't even realise you could have an ultrasound over your eyes!
"You will have to go up to A & E Childrens, and be seen by a Consultant there."
"What for?" I said, "And I'm not waiting another 5 hours!"
"They will decide what treatment she will need, I will ring them immediately to let them know you are on your way."
Meg and I made our way up to casualty, talking about what we would be having for tea when we finally got home, and other mundane everyday normal things.
However, when we were greeted by the Ward Sister at the door, something made my stomach flip - and not in a good way.

"Megan Cubitt and Mum?"
"Yes."
"Come straight through, we are expecting you.  I'll let the Consultant know you're here."
Meg and I looked at each other and raised our eyebrows, both of us surprised by the welcoming reception.
We had only just sat down in a room just off the nurses station, when there was a sharp knock at the door, and in came The Consultant (who was a lovely lady), and two nurses.

"Hi Megan!" She smiled directly at Meg, and turned and introduced herself to me, hand outstretched.  I shook it, but caution made me hesitant in returning the welcome.  She plonked herself next to Meg and said, "Right then young lady, I think you are going to need a scan."  I don't think we can get you one tonight (it was 6.30 pm by this time), and I'm not going to make you stay overnight, but Mummy will have to bring you in first thing tomorrow morning."
'A scan on her eyes.' I thought. 'Ok, that's fine.'  Panic over.
Then she turned to me, "I need to speak in depth to the Opthamologist first, and then I will ring you at home with a time for her MRI, swollen optic nerves can be caused by many things, usually something pressing on the brain."
I didn't hear anymore after that.  I just stared at Meg, and can remember, repeating over and over again, 'just get home… just get home… just get home…'
Walking out of the hospital, I remained overly upbeat, trying to protect Meg from anything else that would be thrown at her, and making life 'normal'.
When we got home, I had to run up to the loo (how normal is that!), and picked up the washing to bring down on my way (again, normal..) then phone rang.  I hadn't even had chance to speak to Craig yet!
He handed me the phone, "It's the hospital?"
"Hello."
"Hello, is that Megans Mum?"
"Yes."
"Right, I've spoken to the Opthamologist, and a the MRI department, I can get Meg in first thing tomorrow morning - about 8.30 am, do you think you could bring her in for 8 o'clock?"
"Yes that will be fine."
"You might want to pack an overnight bag."
"Why is that?"
"I have to tell you that we're looking for a tumour, because that's how it's presenting."
"Where?" my voice getting quieter
"On her brain, I'm so sorry to tell you this over the phone, but I want you to be prepared."
"Ok, thank you."
"Try to get some sleep and I will see you tomorrow."
"Thank you." (why are we always so bloody polite in times of anguish!)
I put the phone down.

"They think she's got a brain tumour." I said to Craig.
"We can't lose her." I managed to whisper, before the true horror of the situation took over me, I thought I was going to collapse, I had never felt fear like it, nor do I ever want to have that feeling again.

Then both girls ran into the kitchen…
"WE'RE STARVING!"

No time to fall apart, the birds needed feeding, and tomorrow was fast approaching like an bullet train.  I was standing on the track with no way out.

"TUT!" Said GF (Granny Ford)

As a child my memories are mainly times spent with my Grandparents.  Grandad Ford was a huge influence, and now I have children of my own, I am more aware than ever of the impact that active Grandparents can bring into the lives of little people.  A typical visit (which usually lasted a whole weekend for me) would be Granny in the kitchen cooking (mainly frying, or boiling something to death - joking aside, she was a superb dinner lady cook, and made a mean chocolate cracknel with mint custard), and Grandad would be happy doing whatever you wanted for as long as you wanted, his time was always yours.  Both of them forever giving.

Granny Ford has always been a bit unique…. she was the only female driver in the family for many years, and drove like a lunatic.  She always laughed at the time we (her, Grandad and I) were coming back from Aunt Lizzies house, I wasn't very old.  We were going through the country lanes at about 11.30 pm in the pitch black.  I was sitting in the back, when all of a sudden I threw a blanket over the top of her head covering her eyes…"DON'T WORRY GRANNY! THE WOLF WON'T SEE YOU UNDER HERE!" Instead of throwing me out of the car and giving me a good thrashing, she couldn't stop laughing.

Actually Granny met my oldest best friends mother before we were even born - by reversing through their front garden wall…..

It was later in Grandads life, that he discovered the art of giving funny Christmas presents, and it wasn't long before we all eagerly anticipated our gifts from Grandad, one memorable gift was when he purchased two pairs of thongs (one camouflage and the other, leopard print).  The humour wasn't in the fact that Craig nearly died of embarrassment when opening his present in front of the rest of the family (although we did laugh our heads off….), but the fact that Grandad had gone into a shop to get them and would have played the part by pretending to buy them for himself.  I bet he giggled all the way home.

Granny still 'tuts' at that.   She is Queen of the Tut!  However, the best 'gift giving' goes to Granny Ford, when it was Craigs first Christmas with my weird family.  Anyway, whilst doing the exchanging of presents she had already given my brother David, some Cod Liver Oil Tablets and my sister Leona some Olivio Spread (Leona was so jealous because I actually had a 'normal' present that year), Granny handed Craig a small parcel, we all raised our eyebrows and waited……  We were not disappointed… for inside the wrapper was an empty toilet roll, and stuffed inside that, was a squeaky toy donkey!  Of course, we all howled, and Craig looked slightly confused, but as usual was very grateful.  Granny just sat there straight faced and said, "Pass me that one over there Samantha - it's got my name on it."

When we moved into our first house (it was a tiny terraced house, with no heating, no hot water, no kitchen etc. etc) and were waiting for things to be installed, Granny said, "Come to me, for a bit of tea!"  I was six months pregnant with Meg at the time, and had been used to her 'dare I say it' unusual fayre.  Craig on the other hand came from a 'nursery food fed family' and had been bought up on mashed potato and chicken, and very English tastes.  As soon as we arrived I knew Craig was going to have a hard time digesting the spread laid before us.  There was the usual 'normal' bits - baked potatoes, salad, bread, butter, ham, but the piece de la resistance was the centre piece, she so proudly brought out and placed in the middle of the table.  It was a strawberry jelly, with pickled walnuts, pickled beetroots set within it, and topped with spring onions.  His face was a picture, and the horror in his eyes said it all when I tucked in and said, "Ooooh, lovely Granny!" "Come on Craig" she said, "help yourself!" I thought I might have to save him from this situation, "Oh dear Granny, he doesn't like spring onions." "Tut!" she replied "Strange boy!"

Darling Granny Ford

When I started writing this blog, I had decided that it would be about my journey as a parent, with a daughter with a chronic illness and a disability.  For sure, Meg's ongoing brain condition is indeed secondary to her Turner Syndrome, and boy, do I have a lot to tell you.

However, I feel that my current issues indeed have a rightful place within my story.  And that means telling you about 'Granny Ford'.

Many of you know Granny Ford.  She is a feisty, strong Irish woman, with independent views and a very confident voice, and was a CND Activist!

My parents had me when they were barely adults themselves, which resulted in my main parenting coming from my maternal Grandparents - Granny and Grandad Ford.  They were typical beautiful and caring grandparents, my grandmother taking on the roll of cook and driver, my grandfather taking on the roll of best friend.  I adored them.  They adored me, and subsequently, my brother and sister.  But being the first for a long while, I had a super special relationship with both of them.

We lost my grandfather about 10 years ago.  This took me a long time to accept and continue with my life.  My grief consumed me, and my Grandfather has a special place in my heart forever.  In fact, I am always talking about him, even to the children, who really don't remember him that much.  However, he is held in such high esteem within our family unit, and god forbid anybody who says a bad word about him - including Granny!

Granny has been cosseted since the death of Grandad.  We have been making sure she has had regular dinners delivered, taken on holidays  and been actively part of our small family unit, making sure she isn't lonely.  My husband adores her, and the feeling is mutual.

When we were in the middle of building the apartments, we had an Aunty that rang and told me "we should move her in as soon as possible to the apartments and do the 'right thing'" of course, without speaking to the accountants first, we did move her in, only to have to move her out 6 months later back into her home because financially, we couldn't pay the rent that was necessary to be seen payed by Directors, and as we were already paying out a million pound mortgage because of the building cock-ups…. we had to move her back into her home.  This was the first time my heart was broken, and my first regret.

Then GF (Granny Ford) had a stroke, well, she actually had TWO strokes, the first at home - yes she is still independent and living in the same house she has lived in all her life, and the second one when she was in hospital, but luckily Leona and I were with her at the time….

"Hello, I hope you don't mind me asking, but can you tell me what is going on with my Grandmothers investigations please."
"Yes, we think she has a urine infection."
"Why do you think that, when she is completely confused? And have you taken a urine sample?"
"Ermmmm…. No."
"And why is that?  She's been here for 2 days, and you haven't taken a urine sample, but you're treating her for that and not a stroke!"
"Shall we test her urine then now?"
"Give me the sample pot and I'll do it when I take her to the toilet."

And so I take GF to the toilet, this is a very proud lady, who couldn't even walk unaided to the toilet, and couldn't even pull her pants up without repeating "Is that it?" a million times.

When we were getting her into bed, she had a huge stroke, and lost all feeling down her right side.  She was completely unconscious.  This is when I nearly punched the nurse who said, "perhaps she's having a 'funny turn'." At which point I cannot help but cry and say, "She obviously isn't having a funny turn, get the bloody WARD SISTER."

…..Who came immediately, took one look at GF and summons the Consultant on call.  Within ten minutes she had been taken down to have a CT scan.  When she came back, she was awake and fairly verbal!  What a miracle!

A meeting with a great big South African Dr, confirmed that she had indeed had two strokes, the second being quite a significant one.  She would recover, but we wouldn't know the extent of the damage until later.

And so she was sent to rehab, and then returned home.  Her short term memory had gone, but she had become the sweetest old biddy you had ever come across.  Totally malleable.  A complete contrast to the feisty mental Irish Woman we had all grown to love and respect.  Even Daisy said, "Awwwww, I love the new granny!" This didn't mean that she didn't love the old Granny, but she wasn't adverse in telling you how ugly you were, or how useless you were because you weren't fighting the CND cause!

And then I had a phone call four days ago at 2am Thursday morning.  It was my mother telling me that
Granny had fallen out of bed, but she was ok, and she would ring me with an update.

The update came at 3.30am - she was going over to Walsgrave, they thought she had had another stroke.

I had another call at 5.45am.
"Hello Samantha, it's Mum, Granny is going downhill, you'd better come into hospital"

And so I went, and we have been there for the last four days, nurturing, caring and loving my darling grandmother in what is probably going to be the last days of her beautiful life.  Am I sad? No. She has had the most active life I know of anybody. My sadness comes from the suffering she is going to have because of the way the NHS system treats the elderly with such catastrophic consequences.

My lovely GF is now blind, paralysed, cannot swallow, and doubly incontinent.  She has so much fluid on her lungs, but cannot cough it up because of a lack of muscle control within her chest.  Her eyes wide open, still and non focusing, causing anxiety in anyone not recognising the signs of how catastrophic a bleed on the brain can be.

And tell me, do you think that she is having regular paracetamol to keep her arthritic hip pain at bay?
And tell me, do you think that she is having regular morphine to relax her when she is agitated and in pain from her brain swelling after resulting in a massive headache ?
And tell me, do you think that she is having regular anti-sickness to stop her being sick when they are trying to feed her through her NG tube?
And tell me, do you think that she is having regular medication to help her with her coughing up black phlegm.

No.  I fight every single day, for these medications.  I am appalled, and strong in demanding these drugs.  This is MY grandmother.  How dare you make the choice in what is 'comfortable' and 'acceptable' in her definitive final days on this earth….

She cannot communicate to you when she is in pain, but as her granddaughter, I can tell.  If she rubs her hips and frowns, she is in hip pain.  If she clutches her chest, she is having pain from coughing up black phlegm.  Don't even dare to give her nutrition into her NG tube without first giving her an anti-sickness injection.

We are exhausted, not only physically, but mentally - and hoping for a quick release for her.  I wish for her to be at peace.  She is in limbo.  And deserves to be at peace.  It is indeed horrific and I will have a new found sympathy for others in the same situation.

My next blog will be about hilarious GF 'normalities', which will help you to understand the mindset this matriarch had.

But as always, even in this hideous situation, there is always humour…

On the Thursday, I had been up since 2am, and sent my mother home at 3pm to get something to eat.  My exhaustion kicked in, and I had to sleep.  I mean, I REALLY had to go to sleep.  Those of you that know me will realise that this is usually an unheard of phenomenon in my life…. sleeping in the daytime! Surely not! I would indeed have to be in a coma to do that!  And so I must have been pretty close….

I sat on the winged chair next to GF's bed.  She is in her own room, so it is private.  I swung my legs over the side of the wooden arms, and closed my eyes.  GF breathing heavily, and settled after having her first dose of morphine.  Although asleep, I could still hear the comings and goings of the ward.  I woke with a start, refreshed after about 20 minutes.  A nurse making her way into the room to do GF's observations.  I went to stand up, and realised my circulation had been cut off on the wooden arms.  My leg feeling like the same size of a small numb elephant, was being dragged over to my handbag. Wincing and disorientated I could see the Nurse looking at me.

"Are you ok Samantha?"
"Yes, fine thank you, I've just got a bit of cramp and dead leg."
"Thank god for that, for a moment there, I thought you'd had a stroke….."

This won't hurt....

"FOR GODS SAKE, PICK YOUR TOYS UP" I hollered down the stairs.  Helen - the Healthcare at home was coming today, to start Megs Growth Hormone Treatment.  I had disinfected the house as if it were a public operating theatre, (in the same way I hoover and clean before we go away on holiday for the burglars.... Idiot). 

I had even put a dress on. I was well and truly demented.

The door went, and we were faced with a really great Nurse who would be looking after Megs care for the next 3 years.  She was young and funky, but had very little empathy, everything  was  approached like a Corporate Project. My corporate life had long gone, and I wasn't sure I'd be able nor even want it back.

We opted for a 'bottom injection' as it seemed the less fretful - unless you are a control freak like Meg who wants to do and see everything happening to her, this sent her skitsy and upset, which in turn made me cry, and I hated it. Even though the growth hormone treatment was absolutely the best thing to treat her with, giving your child an injection, never mind knowing the possible side effects was so traumatic.

There can be no hesitation when administering injections, this in itself goes against the grain.  If you aren't used to them, and let's be fair, who is? (weirdo) You almost have to put on a show, giving firm and real sympathy but not going overboard with it.

I absolutely hate children not having enough pain relief. Or not having 'magic cream' on if they are phobic of needles.  I cannot see what good that unnecessary 'brave' face can do for you! It's a bit like having to go through child birth with a paracetamol (both of which I have done, bloody pointless...). If you can get magic cream, use it. You won't need it forever. If it comes down to cost please let me know. I managed to get Rugby Hospital stocked up with pain relief spray, I am well adversed in getting correct pain relief. Believe me, if you have to do a medical procedure, which can hurt at varying degrees (depending on your daughter) EVERY night for YEARS, don't be an unnessary 'brave' mummy/daddy, when you aren't having it.  That stress level is a compete waste of energy.

After practising on myself and the very brave Meg, who did shout "OWWW"  a few times, I decided to get some spray, and it look all the pressure off, and the confidence and excitement that grew because it didn't hurt anymore was priceless.

She didn't use the spray for long, and I became a pioneer for pain free injections.

The first time I injected her, I went and cried in the hallway, I wanted to kill Helen. It was not fair. Meg came out and put her beautiful arms around me and said, " Thank goodness I have you fighting my corner mum or there would be a lot of tears at bedtime." By week 4 she didn't need it anymore and I was quick to reply to inadequately qualified (in qualifications and life,....) and opinionated adults about what was right and what was wrong.

For gods  sake, it's your child - do you want to see them in pain? No, so shut up and get the spray/cream. Take it from so a mother who DOES know exactly how you feel (and for the record had to inject myself for a whole year) x x x  Let's celebrate for those wonderful and extremely BRAVE girls who have benefited from taking it! 

AMAZING! 

How Drug Companies Get Children To Choose Their Products.

In between this 'renovation drama' and the next (oh yes, there's more…) we had an appointment at the Birmingham Childrens Hospital at the Endocrinology Clinic.

Craig, Meg and I went, as I thought it would be better without mental Daisy running up an down the corridors like she was Sebastian Coe on speed.

When we arrived, we were shown into a room, to choose our 'weapon of choice'.   WEAPON of choice?  I had no idea what the bloody hell the nurse was on about, and even when presented with about 8 different choices of Growth Hormone delivery systems, the horrific truth still didn't dawn on me.

"I want that one." said Meg.
"Okay… and why have you chosen that one?" I asked (like I had a clue!)
"Because it's purple, and I love purple." she said, bouncing up and down, off and on the bed…off….on….off…on…off…on
"….and mum…. MUM….you can change the wrapping!"…off….on…off…on….

Angela, our Endocrine Nurse, came back into the room and asked if we had any questions.  Craig and I looked at each other like we were from different planets.  What questions could you ask?
Obviously used to the complete disarray parents were thrown into in such circumstances, she took complete control of the situation, and gave us a 'pack' with all the relevant details in it.

"So… your Healthcare At Home Nurse - Helen will be coming on Tuesday, once the license and funding authorisation has been faxed over."
First pack handed to me…
"And this is your copy of the drug company that will be supplying the growth hormone, and their information pack."
Second pack…
"If you are going abroad, you will need a copy of you license and written details from your Endocrine Consultant to allow you to travel with the growth hormone.  This is about that."
Third pack...
"Here is my number, you can contact me 24 hours a day.  Any queries or side effects that you're concerned about, you must ring straight away."
Fourth pack…
"These are side effects that can be potentially dangerous."
Fifth pack...
"Meg, this is a CD for your computer and this is Max the dog (hands her a cuddly toy from the drug company).  Actually, I know you have a sister, so would you like one for her too, so she doesn't feel left out?"
"Yes! YES! Y E S!" She replied, like she had got all six numbers on the lottery.

"All sharps - syringes, and vials will be sent by courier, you must keep the vials in the fridge, if they are out at room temperature any longer than four hours must be disposed of, as they will be unusable."

My stomach flipped. Meg stopped for a second and looked at her.

"Mummy will probably have to do your injections for a bit Megan, because the pens (delivery systems) are quite big, and awkward to hold."
"Hmm, okay" she replied, and turned back to her imaginary conversation she was having with the dogs.
"And most importantly Mum (Craig obviously wasn't sitting by me then…..not!), she mustn't miss a single day of treatment."

Oh right, no pressure then.

She showed me where to inject.  And then came the lesson in how to use the 'delivery system'.  This came complete with TWO A4 sheets of paper with instructions on it.  I was never going to learn this.  Craig gave me a look that said, "Don't even ask me." My brain was going into overload.

Leaving the hospital, I was in a complete daze, Craig was in 'male denial' and wasn't even going to acknowledge how to administer the injections, and Meg skipped to the car with two stuffed dogs, and excitement that 'Helen' would be coming later in the week for her first injection.

"Are you nervous?" I asked her
"Naaaa Mum,  Can we have a McDonalds on the way home?"

Oh how ignorance is bliss.

Size is matter of perspective.

That feeling I had when walking into the shop to tell Craig, must be what having a double expresso must be like (this is coming from someone who only has boiled water, and if I want to be really daring  have….Camomile!), my arms and eyes were twitching like I had eaten a packet of 24 Pro-plus tablets.

"It's coming today." I said

"What?" he said, like I had just completed an internet shop.

"DOH…..The lift?!" my eyes nearly rolled into the back of my head.

"Where's it going to go?" 

"Do you want the friggin' lift or not!" I shouted,  "Put it in the front reception area of the shop!" *Stomps off in a massive hysteria*

I realise now that Craig was so traumatised by the whole thing, that his poor brain and emotional wellbeing were well and truly shot.  I know he won't mind me saying that, because it's true.

"We'll pick it up in the van." I said, as though I had to spell out the obvious.

He looked at me like I was a 'simple woman'…… "Hardly" he starts to smile, "There are serious weights in the lift, we'll need a proper flat-bed truck."

"Well book one then, oh, and find a forklift truck driver…."

His look said it all, I was a certified mad woman.

By 1pm, Craig had indeed hired a truck, and sorted out a forklift truck driver.  I made my way down to the industrial estate to meet the 'boys'.

Pulling into the unit, I realised with horror the actual size of the lift, it was huge!  Obviously I have absolutely no perception of size.  In an empty 'lock-up' it looked quite small, however, next to the forklift truck, the lift, was in fact - massive.  There was no way this was going to fit into the shop reception…. and to make matters worse, the fork lift truck driver turned up with his arm and hand in plaster after just having some serious surgery on it.

"Oh my god, you can't drive the fork lift truck!"

"Ahhh, don't worry about it, I only need the one arm, we'll be fine!"

FINALLY! Somebody willing to help us, whatever the circumstances.  I could have kissed him (I did actually smother him with grateful kisses when he had finished).  

The lift was loaded onto the truck, and we drove in proud convoy back to the shop.  By this time, euphoric hysteria took over, and when we came up the street, we were greeted by Craig and the rest of the 'team' waiting outside.  Craig just looked at the truck, his eyebrows nearly reaching the top of his head.

"Yeeeeeaaah Hawwwwww!" I shouted out of the window, "We could always take it home!"

(Luckily Craig had spoken to someone who rented some space in a lock-up over the road from the shop)

We went home that night, laughing at the madness of the day, and although Craig was still having a really hard time regarding the unfairness of it all, that feeling of achievement stayed with us for quite some time.

In which I become half of Cagney and Lacey….

That first week after finding out the builder had gone into voluntary liquidation was only just the beginning of what was to be the most physically exhausting years of our lives.

Three floors of building works, all at different levels.  An absolute nightmare.  Also, I didn't sign up to be a builder! Or a Project Manager! Or a Demented Mother!  It was an absolute necessity that the shop carried on as normal, as we had no other income coming in, so Craig was working at full speed, to make sure things didn't slip.

The day after the 'bad news' was a Sunday.  Craig was in shock, and we took Alex and Georgina back to school in London.  We spent most of the morning talking via the phone to one of our Carpenters regarding the project and how much had been completed.  Monday was going to be full on.

I dropped the children off to school/nursery and went down to the shop.  By the time I got there, some of the building sub-contractors, plumbers and electricians had already bullied their way into the building to pick up their tools and any other materials that they wanted to take.  This sent me into orbit, like a woman possessed (even worse than when I threw the whole streets wheelie bins in the middle of the road on bin day, because I couldn't get my pram down the path…. that's what a lack of sleep does to you!).

I took phone calls from horrible angry men regarding their loss of earnings, which had nothing to do with us as we had already paid Mr Wayne Kerr.  The first conversation was very apologetic. The second one I tried to be sympathetic but by the third one, I just said, "Here, let me give you Mr Wayne Kerrs home address, perhaps you'd like to take it up with him instead of being so aggressive to me?"  Ofcourse, in desperation these people were only trying to get what they needed, but who had lost the most!  I remember a double glazing company ringing and sending an invoice for the windows that we had ALREADY paid for, he was the most vile and brutal man I have ever spoken to, that conversation changed my outlook in the flick of a switch.  He left a message and I rang him straight back.  My words were 'choice' and ones I don't use very often, but they were spat out with fury and new found strength.  I was dangerously quiet and very direct. It resulted in him giving me an apology and a promise of not bothering us ever again….

Meg being diagnosed before all this hitting the fan had changed my priorities.  Whilst it was horrific, Meg's health came first.  It was after all, only money. Craig of course didn't see it like I did.  However, I was now in charge of a building project and Craig dealt with the Banks (I have absolutely NO patience even to this day with banks.)

I became a builder, carrying a 100 years of a theatres rubble and ceiling down 3 flights of steps in a Monkey Bucket (much to the hilarity of Travis and Perkins staff, I could never get the words right -  aka Gorilla Tub).  My knees were shot. Organising, ordering, buying, collecting, getting the best price. And learning a new language, one that I realised I had a natural talent for - 'Builders Tongue'. I picked the children up from school/nursery on a number of occasions looking like I had stepped out of a Dust Mine.  My hair was 'grey' for a loooooong time.

Three incidents come to light regarding this project.  That made me realise that I was perhaps crazier than most…..

The first was in the first week when Craig had tried to sort out collection of our £80,000 lift.  Wayne Kerr had told Craig that it was 'Safe' in his mates lock up, but when both Craig and the Carpenter went down to check on it, and organise delivery, they were met by a steely thug who said he wasn't releasing anything.  By the time I got to the shop, Craig was nearly beside himself, we had already lost hundreds of thousands, we certainly couldn't afford to lose a lift that we had already paid for.

I went into overdrive.  After being short tempered with Craig and the Carpenter, it was the only way to get myself into character, (and perhaps to make myself believe I was a tough woman…) I got into my Gangster Car, my Black Citroen C3 (complete with Disney Child Seat).  My music was on loud and I screeched into the industrial estate just in time for everybody's tea break.  It was then that I saw Wayne Kerrs car at the bottom, like a bat out of hell, I drove at full pelt to it, turning the wheel at the very last minute, and using the handbrake for effect I wouldn't have cared if I had written it off.  I could have killed him for putting us through all this.  No, seriously, I could have killed him.  Anyway, luckily, I stopped about an inch away from his car blocking him in. Breathing slowly, I put my shades on, wound down my windows, turned up my music and waited.  The whole of the industrial estate were out looking at the lunatic in the black car.

A unit door opened and out Wayne Kerr came, face ashen and hands up in the air, saying "I don't want any trouble".
I got out the car like Cagney and Lacey swishing my black rain mac, like a professional Detective Sergeant… walking over to him, I held his gaze and replied, "It's a bit late for that isn't it? Now where's my lift?"
"Oh you don't need to worry about that, it's safe."
"And you think I will trust you with what you've just done to us?……I don't think so.  I will ask you one last time.  Where. Is. My. Lift?"
"It's in the end lock up."
"Right, let me see it, and I will be back this afternoon to pick it up."
Uncomfortably he shuffled into the corner lock up, I was greeted by about 6 big men, one behind the desk was the obvious 'Big Boy' who had spoken to Craig.  The shutters were down, and the fluorescent lighting flickering and buzzing.Tools were scattered around, and three of the men were holding bars.  I stood steady and looked dead straight at him. Wayne Kerr said, "This is Dom, she's come to see the lift"
"Actually, can we just make something clear?  It's Mrs Cubitt to you, and I am here to arrange collection of the lift this afternoon, so make sure someone's here to open up."
"Errrm, yes, she can do what she wants."
"I think so Wayne, considering it's my lift."
And so I was lead out the back way of the unit, through rooms, with little in them, and 6 burley men following me.
There was a lot of nodding and unspoken communication between the men during this time, of which I blazingly stared at them all.  I swear my eyes were glowing red.  I could feel fury flowing from my arms..
The end unit was opened, and there like the Golden Chalice was our lift! I almost cried out with joy, but composing myself I turned round and said right, "get a forklift truck ready for this afternoon, I'll be back by 1pm"
"We haven't got anybody to drive the forklift."
"I can get somebody to do that." (I didn't know ANYBODY who could drive a forklift truck!!!)
and so the time had been set.
The men started to walk back with Big Boy and Wayne Kerr went to follow them.
"Err, I haven't finished with you yet Wayne" I said
"Let me make one thing quite clear.  If my lift isn't ready to go this afternoon, there are going to be serious repercussions, do you understand me?" and with that I swished my coat, put my shades back on, and got into my car, wheel spinning away out of the industrial unit.

Shaking like I was stuck to a vibrating plate, I went back to the shop.

Our lift was coming home!