To my Children

As your family grow up and move away doing their own thing, it often feels that sometimes we are so far apart we as parents don’t care or understand.  Before I went into hospital I wanted to leave a letter to them should the worst case scenario occur:

“Dear Matt and Laura

I wanted to put into writing the words that we sometimes find hard to say; we should communicate more and say more and certainly express how we feel, after all, I am your mum and will always want to be here for you.  Bringing you up on my own wasn’t easy but we got there, and I would always want to be there for you. 

Matt, over the years I have seen you grow from a stubborn (yes!) toddler who threw tantrums and made a fuss even for a hair cut, into a teenager who didn’t always study but seemed to breeze through school!  Your prom came so quickly and I wondered where the years had gone, standing in your black suit you looked so grown up and handsome, I have the picture on the wall and it is a bitter sweet reminder of the weekend of your prom and the excitement, down to the sadness of knowing you would be moving up to Scarborough to live with dad and pursue college there.  It was an emotional day for both of us and it felt empty once you had gone but you made the right choice and where you are today is proof of that.  You are working hard at the hotel/gym and seem to have a focus on where you want to be (other than at another football match!)  

Football however is, and always has been your life and I am pleased when you want me to go to the match with you and Billy, and I enjoy every minute of the day (and no, I don’t know the off side rule and probably never will!)  Once I am well again, you had better make sure you get me a ticket for the Crystal Palace game, we need to win that one!!!

Laura, my baby girl, you have grown up far too quickly and are a lot more independent than I was at your age.  Some days I hardly recognise you, your trendy clothes, the way you wear your hair and make up, it seems to be me asking you for advice now!  I am so glad I got to take the photos of your prom this year for the school.  I had a wonderful night and you looked stunning, and I know you don’t like the picture, it is staying on the wall ok! 

I know we have our differences and we do clash, but I enjoy your company when we go shopping, and even “oh mum you can’t wear that” is ok!  It is a long way from you sitting in your bedroom with your Barbie’s; I remember Christmas when you got your Barbie House and I sat on the stairs watching you and listening to you talk and sing, even now it makes me cry thinking about it!

The good thing is though, I have so many memories of you both captured now on DVD from when you were little, some days I like to watch them and have a bit of a cry, the time has passed way too quickly.  Do you remember the year you opened your Christmas presents from your stocking in our bedroom?  Matt got a new Santa pen and was so excited, it’s so funny to watch; and Laura got a Barbie mug in a box which was equally excitable, however, you didn’t know what it was but you still liked the box!   Time may pass but memories never fade.

Now I am facing some pretty tough times ahead and the seriousness of the operation is quite scary.  I want you to know that no matter what, and if anything happens, I love you both so very much, I am incredibly proud of you both for being as mature and grown up as you are and I want you both to have a long and happy life and look after each other. 

I love you both so very much

Mum xxxxxx “

My wonderful children - some years ago!

In the Meantime.....

Life carried on.  Simple as that, the turmoil that was going on in my head and everything that was happening; work still needed to be done, I had a full time job that I really couldn’t afford to lose – that in itself was a worry as it wasn’t common practice to pay sick leave, however, my employers decided to pay me full salary for two months from the date of the operation.  It was a starting point and one less thing to worry about when going into hospital. 

Home life too was complicated and problematic.  The fact that my husband was not keen on my new found friendship with Mark and the realisation that I had feelings for him was a major problem.  I would like to say we argued it out and cleared the air but we didnt, he simply didnt argue or fight for anything and because by the point of the health issues he realised it was Mark I wanted to be with and to have with me throughout everything.  Without going into too much detail as it is irrelevant to the health issue at hand; it was something that had to be dealt with. 

On the brighter side of things, I still wanted to carry on and enjoy life, after all, I didn’t know where I would be in six months down the line and the phrase, “life’s too short” certainly took on another meaning at that point. 

My daughter finished high school and had her Prom, to which I was thrilled to be their official photographer.  A hectic night but was such a buzz and I never feel more alive than when I am able to take photographs.  She looked amazing, her dress was stunning and I loved being part of her evening.  I stayed out of the way for most of it as I didnt want to be in her way, it was her evening.  She had such a fantastic time and was so happy at the end of the evening as I took her home, squashed into my little Ford Puma (barely able to drive for dress and net everywhere!) She applied for college and on her exam results got into the college doing the courses she wanted so everything was on course for her.   She was keen to pursue photography like me, although as a career she wasnt sure what context, English, Media and Sociaology, a good mix of subjects that she should excel at. 

Although Mark and I had known each other some 7 years previously, we were still relatively new in our relationship and wanted to be together as much as possible.  We wanted to go out, we took the camera every where we went and took silly pictures, the type that usually end up on Facebook!  We had been invited to a wedding at the end of August and were almost too afraid to plan that far ahead incase I had a call with an appointment, but I went out and bought three dresses just in case!  The disappointing thing being that I had just lost almost three stone and was feeling good about myself, but whilst waiting for surgery, I was put on steroids to bring the swelling down on the spinal cord – frustrating, but as my surgeon said to me when I moaned, “Caroline, I am saving your legs, a few pounds wont matter” – ok, perspective achieved. 

We went on numerous picnics, went to open air concerts and country fairs, we watched movies, walked, talked, laughed, and cried, had people over and had barbecues with enough food to feed an army, even when it rained this didn’t stop us!  I have never filled my days with so much and was determined that when I got out of hospital, we would carry on this life. 

Then the letter came for the 5^th September.  A stay of 5-10 days in hospital and then home – how difficult could it be?  I would be up and about in no time J

I then started planning the practical things; things you don't really want to think about but know you have to.  I wrote letters to people, organised my finances, made sure my “house” was in order and paperwork accessible, and in the worst case scenario, I left details for my funeral.  Even now thinking about that gives me goosebumps.  I wasn’t naïve enough to think that there wouldn’t be complications, when they are working inside your body and moving things about as they would be, there would always be the possibility of problems, either coming out of the surgery and having issues, or not coming through surgery. 

The weekend before the surgery, my daughter went to her dad’s. 
Mark and I went into Lincoln for a meal out, I had a choice of anything but it had to be an Indian.  We ate so much we had to walk up and down Lincoln just to feel ok!  We then drove home, almost in silence because we knew that it would be some time before we could do those things again.

The day I was admitted was a grey and dull, dreary day and should have reflected how I should have been feeling, but in all the time, at the back of my mind I wasn’t worried.  I was convinced I would be ok and this was the start of my recovery.  I cleaned the house (which was already clean) and made sure the washing and ironing were done, in my mind, I wanted everything sorted and done, silly really. 

Mark took me to Sheffield and we unpacked and settled to my new bed.  I was initially on ward N2 where the staff were lovely, relaxed yet reassuring.  I wasn’t over keen on being in hospital, but it was only for a short time.  When he left me, he took my Blackberry with him, you know, that was almost like losing a lifeline!  I had no-one to text, or Facebook or even e-mail – good grief! What a sad nation of people we have become when we need constant interaction via a gadget!!!

The night before I had a visit from the head anaesthetist who went through what was going to happen the following day, it was straightforward; I was going to go down awake and have an epidural in my spine to numb any feeling, I was then going to be anaesthetised in various ways as it was a serious operation.  I knew what was going to happen so had no questions for him, and then he asked me to sign the papers to say that I understood the implications of the operation, the possible outcome of paralysis and also the event of death.  I laughed when I signed it, after all, there was no choice in this really and it had to be done. Ironic really.

Anthems in the Park

Appointments.......

The day of my first appointment came, by this time I had come to terms with what was happening, a bit more Googling, and figured it was a disc which had slipped out of place and could be fixed by surgery – loads of people have that done so Iguessed this would be ok. 

Mark drove us to Sheffield to see the surgeon; It was at 7pm in the evening and after a rather busy day at work, I really wanted to be there and have all the answers, right now, everything and how were they going to fix me?  tTe appointment was a disappointment as he was unable to see the scan results and therefore needed another MRI scan doing.  This was going to be done at their hospital the following week, so with no reassurance, we went home a totally disappointed and no further on, all we had to do was wait for the scan the following week. 

Another MRI (oh boy do I hate those machines and no matter how much you try to keep your eyes closed and not look, I just had to!  Then you realise how confined it is, panic and try and calm yourself; honestly, sometimes I wonder if I am an adult at all or just a child who won’t do as they’re told!)  I almost couldnt go through with the scan, they said if I pressed the button and they pulled me out they would have to reschedule, so I had to do it, close my eyes, focus myself, get into the  positive place I had been for the last few months and get through it.  Scan over and I went to get changed out of the oversize blue outfit they gave me, and sat in the cubicle and cried.  I dont know why, frustration, emotion, stress, pressure, everything I guess. We saw the surgeon who confirmed all that we had been told before and decided to refer us to his colleague at the Royal Hallamshire Hospital.  He apparently did much more in the way with thoracic spinal injuries and was the best man for the job.   He wrote to Mr B. my new neurosurgeon and explained what was what and to make an appointment for him to see me in his clinic.  It seemed so long before I got the next appointment, and by which time, I was deteriorating rapidly and had gone from a “normal” (and I use that term loosely with myself!) to walking with a crutch. 

On seeing me at the clinic Mr B was shocked at the drastic change and although had word from his colleague on the best way to approach the surgery, through the back, wanted clarification and ordered a CT scan there and then.  Well, I can cope with those!  In a “polo mint” type scanner which was less intimidating than the MRI, the results were sent straight up to Mr B as soon as it was done and we had results that day. 

When I thought things couldn’t get any worse, they just did. 
He told us that his fears were confirmed and the disc had calcified.  Apparently, discs are made up of a jelly like substance and mine had solidified so that it was the reason for the severity of my condition.  His words to us were, and will remain in my mind for the rest of my life “This is as bad as it gets”. There was no way he could operate through the back, the only other way to deal with this was through the chest.  Now initially I thought that would be from the front, but seemingly not!  Transthoracic Surgery basically means that you go in for surgery and spend the entire time laying on your side so that the surgeon can enter the chest at the side, remove a rib and open the rib cage, moving the heart and collapsing the lung.   He said that surgery had to be done within weeks as the deterioration was too much and by October I would be wheel chair bound.   His only other thing to do was to arrange to have a Cardiac Surgeon to move the heart, neurosurgeon and anaesthetists’ on hand, four surgeons in all.  Even at this point, and I think perhaps it was denial, I didn’t realise the seriousness of what lay ahead. 

Prior to the surgery though I was admitted overnight in the Royal Hallamshire for a Spinal Angiogram. Not the least bit worried about this as I would be asleep..... well that's what I thought.    I went down to the x-ray department awake and asked when I was going to be asleep - I wasn't. 
I had to be awake through the whole procedure where I lay on a narrow bed while they injected a dye like substance into the artery in the groin area.  Once injected, I had to hold my breath and wait whilst they took the pictures.  To say the pain was intense doesn't even begin to explain.  They had to try and locate the main artery that ran along side the spinal cord, hoping that it wasnt located any where near the damaged disc as this would mean a problem getting to it - thankfully, seven or so x-rays later (and I lost count due to the intense pain!) they couldnt locate it, this was a good thing. 
Recovering later on ward I asked if I could go home but was told I had to stay the night, and stay flat for at least three hours until the bleeding from the artery had stopped - well, they didnt say this would be fun did they....

Countless Appointments

.... And so it starts...

And so it starts..

Back in the summer of 2010 I started getting a strange sensation in the legs, it was a cross between pins and needles and a numbness.  I didn’t do much about it at the time as it felt like a trapped nerve and figured it would work itself free in its own time.  By the end of the year things were not getting any better and after a visit to the doctor, who, couldn’t see any real problem, referred me to the local hospital to have a few X-Rays and blood tests. 

Being as I like to Google everything, there began my research.  Initially everything was indicating to Multiple Sclerosis.  Of course, I had heard of this but finer details of what it was eluded me, so a bit more Googling went on until the test results came back negative.  Nothing wrong with the blood, or the X-Rays and the doctor simply said that if it hadn’t got any better by Easter, pop back and they would do further tests. 

Easter came and went and then whilst on a trip to London my legs give way, just a couple of times and left them feeling weak, but enough to worry me into booking another appointment with the doctor.  I was referred for an MRI scan and was thankful when an appointment came up fairly quickly for a Friday morning.  Not really enjoying the confined and claustrophobic feeling of the MRI I was glad when it was over and not worried about the results, due in about 14 days.   A missed call on the following Monday evening from the surgery was asking me to make an appointment to see the doctor as the results were back….so soon?? 

Desperate to get an appointment, I managed to make one for the Tuesday morning and went with my partner, just for reassurance.  I went in alone, figuring it was something or nothing and joking asked my doctor was it serious?  He looked at me and said “it’s not good news at all”.  I called Mark in to sit with me because my mind was reeling, and that was even before I knew what it was.  He pulled out books and references, and explained what it was.   The scan results had come back marked as urgent;  I had a herniated thoracic disc, the t8 & t9 ones, which had calcified and were crushing my spinal cord, basically to the point of severing it.  Once severed, the spinal cord was beyond repair and I was facing a lifetime of paralysis and a wheelchair if something wasn’t done immediately.   I sat there in a state of shock, I knew about discs but had no idea the implications of a thoracic disc, it’s location etc.  He went on to explain the location being in the centre of the spine, an area so rarely damaged he had seen only one other in his 22 years as a doctor.  This news was not reassuring me at all.  He then went on to show pictures and diagrams but by then I wasn’t really listening, all I could hear was “paralysed” and “wheel chair” and how that would change my life.  He made an appointment there and then with a Neurosurgeon at the Claremont Hospital in Sheffield for the following week and that was it.  My Life was about to change in a way I never thought possible.

Looking back now on that day, I remember it as if it was yesterday, the feelings, the emotions, the panic and the total turmoil of what my life was about to face.  I stood for a long time crying, Mark trying to remain strong for me, but all the time feeling that my worl, OUR new life together, had just fallen apart.  The appointment with the surgeon in Sheffield couldn’t come soon enough and I had a restless, sleepless week ahead.

Thoracic Surgery - diagnosis that changed my life

2011 started to be what looked like a promising year.  I was in a job I loved, had a comfortable life and had made a conscious effort this year to tackle the weight issue that had dogged me for years.  I had hypnosis for a few weeks and the impact on my positive mental state was immense, I felt invincible and ready to tackle anything.  My weight dropped off and I was two dress sizes smaller by March, I felt amazing and my confidence soared. 

For reasons I have no answer to, I wanted to make contact with someone from my past, a friend who I had been close to some seven years ago, I wanted to know how his life was, was he happy, the usual stuff.  I was in a marriage that had been marred with issues that were left and had grown too big to tackle, so perhaps my need to go back to happier times was the reason behind contact.  In his defence, my husband Anthony was a lovely person who deserved someone better, by allowing me to follow my dreams of photography, we had sadly grown apart.  

I was however having trouble with my legs and the strange sensations that were happening.  Like most people, I did what we all would do is Googled it and results that came back were shouting out to me MS.  So my advice to anyone who wants to self diagnose, DON’T.  Go see the doctor and get a proper diagnosis, and if they still don’t give you answers, be persistent, you know your body and when something isn’t right you should trust your instincts. 

In May I collapsed and had a diagnosis that would not only change my life but the outlook I had on it, and everything and everyone around me.  To anyone who is diagnosed something that is rare, I wanted to put my words and thoughts out there, purely to reassure anyone that although the outlook is scary, it can be overcome and there is light at the end of the tunnel. 

Bear with me as I put everything into a readable account of what happened both before, during and after being diagnosed with a Thoracic Spinal injury, a calcified T8 and T9 disc herniating and virtually several the spinal cord.   

Today is my 44^th birthday and I am pleased that I am here to celebrate it with my family.

London 2011