12 Months Post Op – This Chapter is Over.

12 Months Post Op – This Chapter is Over.

It is almost a year since I had Thoracic Surgery to remove a T8 T9 disc that was severing the spinal cord.  I can’t believe where that time has gone, so much has happened in that time.

Following TWO surgeries in which they moved the heart, collapsed the lungs, removed a rib and drilled the disc out that was central to the cord (only 80% removed on the first surgery so they went in again ten days later), 23 plus hours of surgery, 4 weeks in hospital with no movement of the left leg whatsoever, loss of muscles from both legs and sent to rehab on a stretcher with a wheel chair I progressed from bed baths, catheterisation, commode and wheel chair to walking with a frame; walking on crutches; a walking stick and the guarantee of a lifetime limp:

The outcome?  I have been back at work since January 2012 - I walk up three flights of stairs to my office, I can walk for miles on a good day when we are out, in fact, being active is better than being sat at my desk or having a lazy day at home!  I am still unable to run though, or indeed run up stairs which is pretty weird!  I walk with no limp unless I am really tired, that was something I was determined to lose, I wanted to look as normal as possible when I am out. 

My rib cage still hurts and is tender on some occasions; I have no sensation in the stomach due to nerve damage, possibly from the two chest drains; I have severe nerve damage due to the damaging disc, this affects the sensation in my right leg - I cannot feel hot or cold which I learnt very early on when bathing!  It feels like it is constantly on fire and the "restless legs" are improving with medication.  I have been taking Pregabalin which was a life saver in one way but increased the weight gain in another so I am weaning myself off that and trying to cope as best I can.  The scars are fading well, in fact, the only really prominent ones are from the chest drains and they look like little stars J

I have fallen over a couple of times too because the mind and legs don’t communicate I can’t "fall" properly if there is such a thing!  I land flat; the legs just don’t want to bend so I may need to work on that one!

In a year my life has changed completely.  I can’t take for granted a body which I thought was invincible; I live every day fully (and am exhausted most of the time!) Housework can wait if there is a better offer of a day out and we fill our weekends with so many things, I actually wonder what I did before!   Most of my days are good and upbeat, although I do sometimes have days when I am so moody and down about things I have to shake myself out of it, or even more, have Mark or even Laura give me a talking to if I REALLY push things!  I am human after all!

Just to reassure anyone and any of those facing what I thought was the worst nightmares of my life, you CAN get better, get through major surgery or the obstacle that you face and have a normal life - you just have to change what you define as “normal” and live life as positive as you can. 

I believe it was the positive attitude that got me through something I never thought I would face the loss of my legs and strangely enough, last night I watched “Harry’s Heroes” which featured people who had faced far worse disabilities and overcome them.  I remember watching the first one just prior to my hospital appointment and they were inspirational in keeping me focused on what the body can achieve.

I am now putting this chapter behind me and moving on.  I wanted to start this blog as hope for anyone else facing the same as when I first heard about this I had no idea what was involved or what lay ahead.  I know it has helped two people, one of whom I am good friends with, Robin, and I know I will meet one day.   If you would like to contact me then please feel free to do so, sometimes it isn’t about knowing everything that lies ahead; it’s the quiet reassurance that we CAN get through things and having someone to talk to.

Caroline xxx

11 Months Down..

Eleven Months Down…

It's now eleven months since I had the first operation followed by the second one a few days later.  For those following progress, this is just an update.

Life has returned to normal regarding work, back full time at work and home.  Life is busy; every weekend is filled with something to do.  Having been through what I have, and how much we take our lives for granted, our bodies that constantly have to take the wear and tear of each day I want to make the most of my life and not sit back waiting for it to happen.  I am also conscious now that having taken for granted good health and relying on my body not to let me down doesn’t just happen, it does require some help in the form of a better diet and more exercise. 

With regard to the surgery:  Well, the rib pain is easing and some days feel better than others.  I don't take any pain killers for them now as I feel the body has had enough to cope with.  The nerve damage is still evident in the fact I can't feel the tummy area, again, I think this is down to the removal of the chest drains but I can live with that.

The left leg is getting stronger and the right leg, despite being the best one on leaving hospital is still nerve damaged with altered sensation and tends to go into spasms when I get tired.  I find that moving about a bit and massage does tend to make it feel better.  I have reduced the Pregabalin which I take for the nerve damage from 300 mg a day to 75 mg with the ideal of dropping back to 25 mg in time.  Sadly the medication did contribute to weight gain which I subsequently read about and it is a very common side effect of it.  Therefore, reducing the medication and losing some weight surely has to be a "win win" situation?!

We have just also returned from a short break at Center Parcs.  I went in the pool each day (didn't do the rapids though!) but was able to do everything else as normal; I played Badminton without being able to run for the shuttlecock (still haven’t mastered the art of running!) and we walked and cycled everywhere.  I was nervous about getting on a bike but I needn’t have worried, despite a few wobbles, it was easy enough to get back in the saddle! 

I have even noticed that all of a sudden, the limp is less prominent than it was before, and I put that down to extra walking and cycling. 

8 Months on - Never Straightforward

On Tuesday 30th May I finally had my appointment to see my surgeon who operated.  It was a six month check and I had a list of things I wanted to ask.

We got to Sheffield and five minutes after our due appointment (bearing in mind there were a lot of others waiting before us) we were told he had gone into a meeting and would have to cancel appointments or see the registrar. 
I wasn't too impressed by this, we had made a two plus hour drive to see him to be told this.  We decided that we may as well see the registrar and see what he had to say.
Finally in he read through the notes and looked at the MRI scan.  Gravely said to me, "you are lucky to be walking, looking at this you shouldnt be".  Reassured that the surgery had been a success despite the ongoing problems.
We didnt touch on the t8-t9 surgery too much, he looked at the notes and the scan pictures of the MRI taken relating to the neck and the C6 disc. 

This wasnt such good news.

There is a narrowing of the spinal cord which, at present doesnt need surgery.  However, after checking that my arms had strength and there didnt seem to be any issues there, he told me to keep a close eye on what was happening.  If ANY changes were to occur then I contact them and go to the top of the list. (that doesnt reassure me like it should). 
His words, which still seem to sit badly with me were "whereas we were looking at paralysis from the chest down with the thoracic discs, with the neck we are looking for paralysis from there down". 

I feel I have been given a life sentence and a ticking timebomb that could go wrong at any time.  My positive side says "forget about it, live life and get on with it" - the negative side which is kicking in right now says "oh god, I am going to end up in a wheel chair after all and there isnt anything I can do about it".  I know this isn't rational thinking but I feel once again I am thrown into a turmoil with something that is out of my control.  I hate it.

My main aim now is to lose some (remaining steroid) weight to reduce any risk on my spine whatsoever; put it to the back of my mind but be aware of any changes in my body and focus on the good things. 

You really don't know what is round the corner. 

Felt much better after a holiday in the sun :)

No news is good news??

Well instinct was right, I knew that something wasn't quite right.

The results eventually came back from the scan and my doctor called asking me to come into the surgery.  To say I wasn't worried would be a lie.  I was a little upset as I left work that night and made my way there.
My doctor is very good at detailing information and as soon as I went in, out came the books and the diagrams as he went through the results of the scan.  There are multiple probloems from the C4 through the neck to the C7; the C6 being the prominent one that is causing me problems.  He has written to my surgeron in Sheffield who responded and wasnt unduly worried and said there was nothing "sinister" in the report.  He did however want to see the scan pictures so I will await a letter from him to see what he thinks.  My doctor said that this is likely from either being a rugby player (well, THAT is something I am definately not!) or a major traumatic accident - explaining that the car crash some 25 years ago has now come back to haunt me. 

It also explains the migraines - C6 is linked to migraines, so at least I can explain that one. 

Right now though there is no talk of surgery so its business as usual and get on with life.  The pain has diminished from the neck and shoulder and the only evidence of something wrong is the right thumb feeling numb and tingly.  I can live with that but it really does make texting on my phone a problem!!!!

Note to him upstairs - Please could you give me a little break? I'm trying to get the other spinal problem sorted right now so if you could cut some slack and let me get on with that without throwing more problems into the pot
?!!!

One Step Forward.....

One step forward, two steps back is what they say isnt it?
This week it certainly feels that way.  I am walking about without the stick now, feeling much more confident as the days move into weeks and am beginning to feel normal again.
So, when an achy neck and shoulder gradually gets worse and feels so bad it is keeping me awake at night, I figured I would see the doctor.  The pain radiates from the neck and down the right arm, all the way down to my thumb which has now lost feeling, the numbness and tingling has just touched the two fingers close to the thumb.
Am starting to worry now.
The doctor prescribed Naproxen, a stronger version of ibuprofen I think.  His words then were; if it doesnt improve after Easter, come back and see me and I will arrange a scan as it could be the C6 and C7 disc pinching the nerve...... oh god, dejavu.......
The week has progressed as has the pain and the tablets, although making me feel sick, have not done much in the way of pain relief so I rang the surgery and asked him to call me. 
Perhaps I am paranoid, but gut instinct has now told me to listen to my body and something just isnt right.
He rang me back, still I feel paranoid but he is ok about it, can I travel to Bradford for a scan? It would be quicker than waiting? Absolutely yes.  It's not booked for Friday 13th at 9am.  I am hoping the date isnt a bad omen!
Fingers crossed this can be dealt with quickly and non surgically, I really have had enough of hospitals for a while now!
Now I just have to sit and wait to see what the outcome will be - keep your fingers crossed for me xxx

6 Months Post Op’s – Time to Reflect

So, it’s my 44^th birthday.  Last year on my 43^rd I was adamant that I didn’t want to be 43 as it had a bad feeling – they say trust your instinct and I certainly felt it was a bad number! 

It’s hard to imagine that it is now just a little over 6 months down the line from the operations, all of those days in hospital seem a lifetime ago and life returns to “normal”. 

Physically how do I feel?  I have now removed myself from all the pain killers.   I now just rely on the Pregabalin for controlling the nerve damage in my legs, by taking these a couple of times a day, it seems to have calmed things down, although they do feel like they are on fire but they aren’t as jumpy!  The rib cage is still very painful and I sometimes feel a dull ache in my back, but if I can handle this on a day to day basis with the occasional help from over the counter pain relief, then I think I have come a long way. 

Last week I started walking about without the walking stick.  It folds up into my bag and I like the reassurance at the moment that it is there; I still get tired but that’s just down to general fitness and I think that once the good weather has arrived things will improve considerably and we will be able to get out and about and walking again.   I concentrate when I walk and make a conscious effort to try and control the steps and not become lazy when I walk.

Mentally I have a few issues with what has happened to me.  There are always people who are worse off than you however some days self pity and self loathing do take over and I do get down about what has happened.  Maybe it’s impatience on my side but I want to be back to my normal self again, right now.  I sometimes sit and have a cry, looking at the picture on my desk that was taken in London, I wonder where that person is, how much I hate the body I am now living in and feel that there is a further battle ahead in trying to get back to being that person.  I know I can do it but there are some days when it really doesn’t feel like it. 

I know above all I am thankful for what the surgeons did for me, their swift actions into operating that have ultimately saved my legs; nurses and doctors who helped me through those days; the support of my friends both near and far and colleagues who keep me smiling and are there for me when I feel a bit tearful at work and give me a hug; to the “Facebook” family of friends I have and their support over the last few months and their lovely comments when I am having a sleepless night and post messages (and I thought it was only me who had sleepless nights!)  Most of all I have the love and support of my family who have been strong and brave throughout this.  Their never ending patience with me (being a bad patient!), their constant support to friends who have asked and wanted to know more, for carrying on with their day to day lives and still making time to come and see me and look after me. 

I am now looking forward to a fresh start, renewing my interest and work in photography and taking each and every day as it comes. 

So today I feel I am allowed to celebrate my 44^th birthday – life begins at 44 now!!!!

A New Year and a New Start

Happy and settled at home, I went back to work full time after Christmas.  Initially I struggled with the days and felt tired, but gradually my strength came back and I felt a lot better, in fact, I think work progressed me to a certain degree. 

However, there was a further downside - just when would things go right?  My hair had started falling out and I didn’t know why, I thought maybe it was the medication but I had been on it for such a long time I figured my body would be used to it.  I went and had blood tests and they all came back normal, thankfully.  I didn’t want to start the year with another problem.  I then talked to the practice nurse, who said that the body had been through so much trauma that usually about three months after such things, it closes down and tries to repair the body where it is needed, i.e. The ribs, lungs and heart etc.  Now while this is all very well, any woman will know that your hair is important and is more visible than the inner organs and I was pretty devastated by this new setback.  My lovely hair, which I took pride in, was looking pretty sad and sorry for itself and coming out in handfuls.  However, once I realised this would be a short term thing, I stopped worrying.  I figured that if I worried more, the worse it would be.

Gradually, I am pleased to say it has stopped falling out and is starting to grow back.  I have been taking Well Woman tablets to boost the vitamin intake, just give the inner healing a little help!  My next aim is to tackle the steroid weight which seems to have settled around the body.  Hopefully with more movement, this will in time come off and I will get back to how I used to be.

I have reduced the medication now to just one Tramadol a day and intend to drop that by the end of March.  The ribs still hurt but each day it becomes a little easier.  The legs are getting stronger, and although a little lazy with the physio exercises I realise the importance of these to get the body to a place where it will naturally be – the surgeon said that by about 18 months post op, however I am at that stage is where I am likely to be for the rest of my life so it is my intention to help it as much as I can.  This isn’t always easy when you get home from work and feel tired and want to fall into bed!  Mark bought me an exercise bike and I am going to use it more to strengthen the legs.

I have a holiday to look forward to in May, a week in the sun, and I think we deserve a little bit of “time out” after what we have been through, both mentally and physically.  I still have issues with my weight which is still there after the steroid intake, and I know it isnt the end of the world, but I dont feel I have any body confidence now.  The shape I am, the way my legs work and how I look; I need to get myself into a state of mind that will improve positive thinking.

Christmas 2011

Work and Normality

I decided to go back to work at the beginning of December.  I had been off for three months and I needed to be paid a normal salary again. 

Initially, I was going to go back full time but I started back on the Monday, and by the end of the day I was exhausted.  I had moved office (still on the third floor!) and everything had changed round.  I was tearful for most of the day, and felt like a fish out of water, I wanted to go home and feel secure.  I spoke with my boss and agreed to do three days a week until the New Year when I would see how I was.  This worked better for me as I could have Tuesday and Thursday to recover.  I was still on heavy doses of Tramadol, Declofenac and Ranitidine just to keep the pain at a level.  Once New Year came however, I was determined to drop this dose down bit by bit and manage the pain level myself.

Working in the office all day and then starting again at home was tiring.  I felt physically and emotionally drained.  I would cry at anything and some days the pain in the ribs was so intense I didn’t know what to do with myself.  My legs felt useless and I would go through stages where I felt sorry for myself.  I did get told once to “stop feeling sorry for yourself” but to be honest, I felt I was entitled to feel like this once in a while after what I had been through!  I had sleepless nights and often lay awake thinking back over the last few months and how things had changed in my life.

I had up and down days; my mood swings were frequent and I would cry for no reason.  I think sometimes it was just sheer exhaustion that did it and I looked back to when I was a child and wanted that security again, of not being in pain, of being "normal" and not wanting to be responsible any more.  It seems a strange feeling to have but there were days when I really wanted to give up on everything.  This was hard on my family at times and it was hard to try and explain how I was feeling, I don't think I ever did, it's sometimes just easier to pull yourself together and live with it.

I no longer had the ability to run, (not that I was a runner!) jog or even get myself up and down off the ground easily.  I had to learn how to walk properly, how to make sure my foot wasn’t rolling to one side, think about straightening my body and the alignment of my hips!  No one teaches you to walk when you are a child so it is so un-natural to learn to do it as an adult!  I wonder if I will be able to do the things I used to; outdoor photography, portrait work, did I even want to?  I felt a long way off from wanting to do anything to be honest.


Mark bought me a car for Christmas, we traded in the sporty Puma and got a practical car in which I can get in and out of. I love my new KA and started driving in January this year. :-)

My new KA - a fresh start driving again.

Progress

Physio continued from Louth Hospital on a weekly basis, I was given exercises to follow and goals to aim for.  I also had an appointment to see my Surgeon on the 23^rd November in Sheffield, I was determined to be walking by then.

When we arrived for our appointment, I was wearing the knee brace, I was using ONE crutch to walk with.  When I was called in for my appointment, I stood up and walked into the room.  The registrar who I was seeing said he was amazed to see that I was walking,  he said that when he called me, he was expecting to see me in a wheel chair and totally incontinent, having read the notes on my hospital file.   That made me feet ten feet tall knowing I was a little bit ahead of what they were expecting!  He talked to me, checked my wounds which were now healing well and then Mr B came in to see us.  He too was amazed at how well I was, quite dumbfounded by the recovery I had made to date, being as it was only two months post op and the last time he saw me I couldn’t walk. 

I explained about the nerve damage to the right leg, and they both suggested a drug called Pregabalin which should calm the nerves.  I was already on one that my doctor had given me but felt it was not really helping. 

He was pleased enough with the progress he said he wasn’t needing to see me for six months.  Six months!  I most definitely would be walking by then and hopefully with no limp, or dragging the foot. 

When I walked out of that hospital, I felt such a rush of enthusiasm and hope that by May 2012 I would be in a much better position and hopefully on the way back to normality.

Scars are healing well.

A New Lease of Life…

Ok, so I could say life returned to normal?  No.  It took a lot longer to get anywhere near. 

The first two weeks whilst the legs were still weak, I had to have help getting in and out of the shower.  Dad fitted me a hand rail on the wall above the bath which proved invaluable. I could dry myself and do everything I needed, but that was it.  Mark was at home the first week and would help me on the stairs as I concentrated on each step, mentally going through the routine we had done in hospital.  Laura was with me for the second week when I became a little more confident about the house.  However, if she went out I would make sure I was sorted and didn’t need anything and stay in the bedroom.  I felt so useless and I think I was a little hard on myself in expecting things to return to normal almost immediately; when you are used to doing your own thing then it is harder to rely on other people.

On the third week, I was home alone.  I had the community nurse coming in to change my dressings and Yvonne would call round to see me.  I would then be downstairs while I had company.  I made sure everything was done before getting back upstairs and staying in my safe haven until either Mark or Laura returned home. 

One day when I was able to get myself in and out of the bath,  I decided to have a soak, Mark was due home late and Laura was out so I thought a bit of relaxation would help. Hmmmmm, hadn’t really thought that one through though!  I filled the bath and got everything to hand, stepped in with the right leg, held onto the rail and lifted the left leg in to find the water temperature WAY too hot.  That was the day I discovered the nerve damage in the right leg was severe and I had no sensation to hot or cold.  Not the best way to find out however!! 

Once sorted, I got myself sat in the bath and realised that with the dressings still on the back, I wouldn’t be able to lie down, thus realising it wasn’t going to be such a relaxing time after all.  I made the best of it and then decided to get out, another dilemma!  Two legs which were un-co-ordinated, didn’t know how to get out of the bath!  In the end, I drained the water, got myself onto my knees and then pulled myself up with the rail and the side of the bath.  Wasn’t going to try that again in a hurry!

I soon learnt to do housework things as I became more mobile, and with the aid of daytime TV (it bores you so much you WANT to do housework!) I managed to do a little ironing, washing and even cleaning the fire out with the use of the Zimmer frame to help me up!  By the time I had done even the smallest chore, I was ready for a rest but it was progression. 

I lived for the weekends when we could go out.  The first weekend we went out was football that Mark coaches; I spent the entire morning sat in the car watching the autumn leaves blow around, the sun was bright but the air was cold, it didn’t matter, I just loved the feeling of the open space. 

Being out in the wheelchair was another thing though.  Despite my initial thoughts on not having one, reality was that I needed one.  I was unable to walk any distance so if I wanted to go into town or to the shop, I had to use one.  After calling into work one day to see everyone, we went for a walk around town.  I got so upset at not being able to get around, the pavements being uneven and hazardous, the roads intimidating and the shops inaccessible, we gave up and came home.

Even the run up to Christmas saw me getting equally frustrated at shops.  I was good at manoeuvring my vehicle but shops packed their displays so tightly, I often found myself stuck.  Mark would joke that he knew where I was because he could see something moving and not see anyone standing!  I realise how, as a nation, we are not disabled friendly with card machines at silly heights, displays not accessible and worse still, the attitude of people towards a wheel chair user.  Mark generally pushed the chair and shop assistants would speak to him instead of me.  That was something that angered me immensely.  I was in a wheel chair, my disability, albeit temporary, were my legs not my mind!  Even other shoppers were less than patient with the wheel chair – I challenge anyone to spend a week in a wheelchair, let’s see if their attitude changes then!  I also noted that people would be less considerate when parking vehicles; I don’t have a disabled badge and don’t intend to get one, but people seem to abuse them, I now have a different understanding of disabilities. Rant Over!

Autumn

Homeward Bound

We drove home on the Friday evening. It was a lovely evening but I don’t remember much of the journey; I was sat looking out of the window, looking at everything I have always taken for granted, our beautiful landscape, seeing people running, walking laughing, life going on around me as it had been whilst I was in hospital. 

I am not ashamed to say that I envied people with “working” legs.  I hated how mine had become, hated seeing what the steroids had made me into, changed my shape completely, and although I was now off them, and they had helped reduce the swelling around the spinal cord, I resented them for this body I was now living in. 

Although mum had prepared food for us, what I really wanted was a curry, so we stopped and got an Indian take-away.  I was so used to bland (although pleasant) food in hospital; I really wanted something with flavour.  We had mums dinner the following day J

Going home was very strange, almost alien like.  It felt so odd walking back into the house I had left six weeks previously.  My cats were a little apprehensive about me being back and whilst Mark unloaded the car, brought everything in and settled me down, I sat on the sofa and cried again.  I don’t know why, emotion just over took me.  I was scared about being out of the security of the hospital where everything was safe and done for me if I needed.  Now I had to learn to, quite literally, stand on my own two feet. 

That night in bed, Mark and I held onto each other; our own peaceful sanctuary, just the two of us.  We didn’t have to talk, I don’t know what he was thinking, but I just thanked god I was alive and home again and with a little bit of work, and the help of my surgeon, I had my legs back and that, a start of a new future.

New Legs

Light at the end of the Tunnel

It was confirmed by Physio and after an assessment, as long as I was able to walk up and down stairs with the aid of a stick, I could go home.

I exercised those legs like never before.  Physio had got me a knee brace to hold the knee in place to stop it kicking back, they also ordered me a new foot brace but I tried it with the knee brace the two wouldnt co-ordinate and I fell over.  I felt so silly lying on the floor and it took three of them to get me up, I cried purely because I had become so dependent on other people and couldn't do everything for myself anymore.

I prepared myself to go home, six weeks after going into hospital for Transthoracic Spinal Surgery I was going home.  I had a lot of physical work ahead, and a lot of emotional issues to get over, but I was going home! How exciting!

Everything was ready at home, mum, dad and Yvonne got the house ready for me; There were a few problems with the house, electrical issues that needed dealing with and I tried not to worry, dad would sort it, my main aim was to concentrate on getting out!  Physio assessed me on the stairs and said I had done well and they saw no reason why I couldn’t go home.

Friday came; I went through my regular morning routine, packed my bags and prepared myself to leave.  I had bags of medication to see me through and a list of things to do. 

Jean, Caroline and Gill, my fellow room mates, were all sad to see me go – whilst I was sleeping in the afternoon they got me a card and all signed it.  It made me cry.  I knew these people for two weeks, yet we had such a bond with similar spinal problems.

When it came to leave, Gill was in tears, there were hugs all round, even the nurses were sad to see me go but for the right reasons. 

Mark arrived and when I was finally discharged, he wheeled me out to the car in my own new wheelchair and we set off for home.  He was going to be living with me permanently now, my life had been taken off hold and had just begun again and i was nervous and apprehensive about what was ahead.

Fresh 

Rehab

The ambulance journey to Lincoln was not the best, I wasn't sure if the driver was aware that I had just had spinal surgery but he seemed to hit every rut and pot hole on the road.  Although the sun was shining and it was nice to be out in the open after four weeks in a hospital with no air and clinical smell.  I chatted to the assistant who sat with me through the journey, and dozed the best I could.

It was a Friday when we left Sheffield, I text Mark as we got to Lincoln and felt like I was home once we passed his place of work.  On arrival in Lincoln, I was wheeled to the Ashby Suite and given a bed, lunch was on its way for me and I was given a Zimmer frame immediately as I needed to use the bathroom.  Physio observed how I was moving and from that she could determine what work we needed to do.

I had the weekend to settle in to my new ward; Jean was across from me, she had been in since January; Gill was in the bed next to me and was from Louth, very close to me and shortly after, a lady called Caroline arrived and was the fourth of our little group.  We all got on well, chatted, and laughed and it felt comfortable. 

Physio started on the Monday and I still had little to no use in the left leg so I had to start building some muscles up.  I was given exercises, a slide sheet and off I went.  I exercised every day on my bed, even if I woke during the night I would try and pull my left leg towards me and make it move.  Gradually, things started to change and I could move my leg from side to side and up towards my chest.  To me this was a major achievement and I was ecstatic.  I was using the Zimmer frame to get me to the bathroom, and they gave me a wheel chair to use so I could get out and about.  This was particularly good news for when Mark came to visit.  He came every lunch hour and every evening after work, I saw much more of him.  Mum and dad were able to visit more often too being just a few miles down the road, and I also saw more of Laura.  Things were looking up!  Visiting time I was always up and ready to go out in the wheelchair.  Mark used to take me to get a coffee from the machine and we would sit outside in the late summer sun.  Even though it was October, it was really warm and the simple pleasure of being outside was good enough for me.  We did laps of the hospital and I learnt to manoeuvre myself really well with the wheel chair.

I didn’t always want to use the wheel chair though and when it came to having our dinner or tea in the dining room I would often use the frame to walk me down there.  Of course, it took longer but I figured that getting down there in the wheel chair wasn’t going to get me walking any faster.

I also became more independent with everything else.  I was able to get into the shower on my own, slightly unsteady on my legs as I transferred myself from my wheel chair onto the bath seat but I did it.  I also refused to have help when I needed my curtain pulling round me, which was often a source of amusement as I tangled muself up in it trying to close it!  The nurses offered to help but if this was rehab then I had to learn to do everything myself as they weren’t going to be there at home for me.  It took longer and was clumsy  but to me it was one step closer to normality. 

I had a regular routine; showered every day, made sure everything was in easy reach of the shower, dried and did my hair and make up (just enough to make me feel like me!) and dressed. 

The days were filled with talking, eating, exercising and sleeping.  I was able to self medicate so I got familiar with what tablets to take and when; initially there were so many I couldn’t keep up, gradually, I became expert and remembered to take them at the right times. 

My pain was well controlled and all I could feel was the sites of the chest drains which still had dressings and the wound from the surgery.  The dressings were changed regularly but the second chest drain site was taking longer to recover and was messy, it felt sore too, possibly because the stitches had been left in longer than necessary?  The ribs felt incredibly sore and tender but I guess gradually over time that would ease.  Whenever I went into the bathroom I had a look to see if the missing rib had made a difference to the waistline, sadly not visible yet!!!

Days in Lincoln went quite quickly and it was a more spacious ward therefore felt better.  We had fun and laughed, and being able to get out in the wheelchair made a huge difference. 

The more times I saw Mark, the more I would get upset at leaving time and have a little cry once he had gone.  I had been in hospital for five weeks and I desperately wanted home.  I just had to convince them that I was strong enough to walk and I would be able to cope.

My ray of light came when I spoke to physio who said there was a possibility that as I was making such good progress, I may be able to go home the following week.  I was so excited, but at the same time, didn’t want to build my hopes up that I would be able to leave, after all, I had been in hospital for such a long time, I had begun to give up hope!

Just a few to keep me going....!

The final Countdown…

I was becoming more mobile as the weeks went on.  I was still on a lot of medication but none as strong as the morphine. 

The highlight of my freedom to move was when I was allowed a shower!  A proper shower so I could sit in a bath chair, wash my hair, clean myself and feel the simple pleasure we take for granted.  I think I bored the poor nurse with my excitement at having a shower!  The first time I had one, I sent her off to do something else so I could sit alone and enjoy the peace and quiet, and the never ending stream of water.  I must have washed myself at least a dozen times before submitting to getting dried and back on the ward.  The simplest pleasure that I took for granted - how I had missed it!

My aunt came over to visit me the day before they moved me.  She stood at the end of the ward and looked round, then walked out.  She hadn’t even recognised me.  I had my hair pulled back and the steroids had given me a round face, I can understand why she didn’t recognise me and although a little upsetting, I later found it funny, the steroids had clearly changed my face beyond recognition to even some members of my family!

Physio got me up and moving and the leg was still showing no sign of wanting to move without help.  I remember the day when Physio brought me in a Zimmer frame and I went from the bed to the end of the ward, one leg moved forward and she lifted the other leg.  Gradually I was able to drag the leg with the aid of the hip doing the work but I was up and those muscles that had been in bed for so long and had disappeared, slowly started to appear.  I was given a foot brace to put inside a shoe which stabilised the foot, slow, slow progress but to me it was a major breakthrough.

Eventually, I heard talk of moving me to another hospital close to home whilst they waited for a space in rehab; either in Sheffield Northern General of on Lincoln Ashby Suite.  In the meantime, they were sending me to Grimsby.  I was mortified.  Didn’t want to go and sit in a hospital bed and wait, perhaps even be forgotten about.  I got upset and stressed and they calmed me down; however the day before the ambulance was coming to take me to Grimsby the nurse rushed in to me, excited and smiling, Lincoln had a bed.  They were sending me to Lincoln! I would be across the road from where Mark worked, forty minutes from Laura and close enough for friends and family to visit.  The excitement couldn’t be contained; I was going to be closer to home and having rehab that would see me walking.  This time the tears were of relief.

The day before I went, I managed to drag my sorry state of a body all the way to the toilet with the aid of a Zimmer frame and physio; it was the most exhausting thing I had ever done but again to me it was another achievement. I did have to have a wheel chair to bring me back though and was quite funny being pushed along with a zimmer frame above my head!

On my final day in Sheffield, I packed up all my belongings, and waited for the ambulance to take me to Lincoln.  I was sad to say goodbye to the nurses but was looking forward to rehab.

Bit of light reading!

Days ran into Weeks…..

I spent my days in a routine of sitting up in bed and progressing from bed baths to washing myself, with a little assistance from the nurses.  I progressed from being catheterised to being able to get out of bed with assistance to use the commode.  Not glamorous but an achievement nonetheless.  I was still in hospital gowns due to the ease of use, but felt positive and upbeat.  I chatted to the nurses, had visitors most days; Mark mainly, but then he or mum and dad would bring Laura to see me.  My cousins came to visit and cheered me up no end with so much laughing.

One of the nurses ordered me a new mattress, an air flow one which made me much comfier, as long as it didn’t get unplugged and deflate!!!  It was a little uncomfy therefore when I went off ward to have scans and chest x-rays to see if the lungs were working properly.  They were still draining into the chest drain so it couldn’t be removed.  It took longer this time to recover and attached to me for a longer time.

I remember being on the high dependency unit one night; I was on my own so it was quite nice and peaceful!  I was chatting and laughing with the nurses and the anaesthetist came down to see me, he was amazed at how well I looked all things considered and I felt great. That night my nurse wired me up to the ecg which worried me somewhat.  Why?  What was wrong with me?  Was something going wrong?  I started to panic; he then placed his chair at the end of my ward and sat monitoring me.  Every time the machine bleeped he got up to look, I was getting more and more paranoid and panic stricken to the point of hysteria.  I was scared to sleep in case I was going to die, I wasn’t sure what was happening and they had to bring the ward sister down to calm me down.  Gradually, I drifted into sleep for a few hours and woke at 2.30am (ALWAYS that time!) and my nurse came and brought me a cup of tea.  I apologised to him for over reacting and being silly and we laughed about it; I guess the morphine does things to your mind and sends it into overdrive. 

Mr B came to see me to let me know the outcome of surgery two.  His words “you don’t do things by halves”  - you think?!

The original surgery which had been only 80% successful to remove the disc.  He had grafted the rib but on the second surgery had to remove everything and remove the remained of the disc, There were two surgeons dealing with this and they were confident now it was sorted. I was not able to have a further surgery no matter what.  He had drilled and smoothed the part of the disc which he had to leave attached to the spinal cord.  He described it as a floating island now totally unattached to the disc and the spinal cord.  Now I had to wait and see the progress. 

As the days went on, routines were formed and life on the ward was habit.  I had given up the idea I would be leaving any time soon! 

Eventually, the day came when they clamped the chest drain and it was ready for removal.  It didn’t hurt as much this time and I was stitched and free of one tie. 

I then had the epidural removed and as the pain increased, the morphine was gradually reduced before being removed from my hand.  I was totally free from all machines now.  A sense of relief.    I was able to get out of bed, sit in the chair, physio tried getting me moving but it was slow progress.  I lay in bed every night looking at my left leg, willing it to work, trying so hard to make the toes move.  I spent a lot of the night awake and tried tirelessly trying to get a response.  One day the big toe moved.  I was ecstatic, the nurse saw it and we laughed about it, but it wouldn’t move on demand so I just kept going until there was movement.  I cant explain the excitement of knowing that there was something working in there!

When I moved onto N2 I was on a ward with three others.  Two were stroke patients but lovely, unable to communicate though.  The other lady was elderly and although she was mobile and able to talk, she wasn’t particularly nice and made comments to her family that I was always using my phone.  She had visitors every day and sometimes twice a day; some days I had none and my phone was my lifeline.  The feeling of sitting on a ward and not talking to people all day is very difficult and I was very upset by her hurtful comments.  I didn’t have anything to do with her after that. 

Mark brought Laura over on several occasions, she had called at the house and got some belonging for me so I looked forward to seeing them.  It was also nice for them to have the journey over to chat and build a bond – I think the whole episode has brought us all closer together. 

We had a  few misunderstandings throughout all of this, I am afraid the combination of medication and texting people doesn’t always work and I said a few things I probably shouldn’t have.  The sheer frustration of not being able to walk and being stuck in a hospital bed with no date of when I could leave was taking its toll. 

All the get well cards 

Week Three… Just when you think it can’t get any worse!

I can’t believe I am now entering week three in hospital.  I don’t feel any further on, my legs don’t seem as bad as the previous week, the left leg has gained a little more strength but to be honest, it is still a dead weight and I am beginning to wonder when things are going to improve now.  I can press down on the bed but that is as good as it gets, the right leg is fine, seems to be working ok although the feeling and sensation is still a little strange.  I want to speak to my surgeon and find out the outcome of the scan, I want to know if I am fixed.

Physio Terrorists come round daily, they get me out of bed, standing, it’s real fun and games as I am attached to a morphine drip, have an epidural in the back and a chest drain on the bed – I won’t be escaping any time soon! 

Am still on bed baths and getting my hair washed as and when the nurses have time.  I have to admit, that is the best feeling in the world and I love it! 

I had a text off Mark “you won’t believe where I am”….. you’re right. 

In a million years I wouldn’t have imagined he would be in an ambulance on his way to Lincoln hospital as he had injured himself whilst playing football.  Looking back it seemed funny but at the time it was incredible.  What had we done to deserve this?  We also had a message to say that his daughter was in a hospital in London, so three of us were stuck in hospitals miles apart!  When he managed to get out of hospital that day, he had severely sprained his ankle and was unable to drive.  The day he couldn’t visit me was the longest day ever and I was devastated.  However, he needed to rest and that wasn’t a bad thing.  Three weeks of doing a four hour round trip was taking it’s toll. 

He did manage to get to me the following day when Leigh and Chloe drove him over and he limped in to see me, and walked out with my crutches!!!


Matt completed the Great North Run whilst I was in hospital, he has really progressed with his fitness and running since starting his job at the Hotel and Leisure Club.  He has come a long way ad I am incredibly proud of his progress, he even dedicated his badge to me :) 

Round Two!

 

I remember more this time.  I had my premeds after washing and preparing for surgery.  I went to sleep but they were later taking me down so I was a little more awake and with it. 

Waiting to go into theatre with the anaesthetists I laughed and joked with them.  They asked if I remembered the previous weeks’ conversation – no??  The enlightened me and I was mortified, I clearly like to talk!!!  Relief came when they put me under, best I don’t hear the rest!

The op was over.  It took about eight hours this time and I came out with a new chest drain and more wires.  I had a candula in the hand to administer morphine straight from a drip which I was glad about.  The hospital had rung Mark when I was through surgery and I awoke to find him looking down at me worried. I almost panicked; he seemed very distant, not his usual self but he smiled at me as I drifted in and out of consciousness.  I was glad he was there.  He later told me he was worried, scared knowing the implications of the second surgery were far worse and to know I had come round was sheer relief. 

When I eventually found myself back on N1 ward, I felt comfortable and reassured if that’s the right thing?  Wired to three monitors and with another epidural for pain relief, I was again confined to the bed with nothing but sleep.  I was incredibly thirsty and was allowed water; gradually as the evening wore on I was allowed a coffee and some toast.  Boy was I hungry! Toast had never tasted so good and although it was a little difficult to swallow food due to the fact I'd had  tubes down my throat for the best part of the day, it was worth the discomfort! 

The day after the surgery, mum and dad came to visit.  I wanted them to come over, I had an incredible need to see my parents, almost child like need in reassurance that everything would be ok; I didn’t want to be a grown up anymore with the worry and responsibility I wanted security of life when I was a child.  I was so pleased to see them.  I don’t think in any of the time when they came over I cried in front of them, I wanted them to see me as strong enough to get through all of this.   I never felt that I had done anything worthwhile in life to make them proud (after all, two marriages down didn’t constitute a success in anyone’s eyes!)  I always have felt like a failure as I didn’t pursue a career like my brother did, and I made myself a single parent, having to rely on their help and financial input ( to which I ALWAYS paid then back).  I didn’t want this episode to be a sign of weakness in any way.

In all of this time, people close to me and friends must have been worried immensely.  People always ask about the patient and rarely think about the carers of the family and what they have to go through.

 

Mark was my rock who contacted everyone after the operations and visits to give them an update, he even updated Facebook, even though he wasn’t sure about it!  People always ask about the person who is ill, but what about those who are also going through it, albeit not physically, mentally it is a worrying, scary time for family and I am glad I had such good friends and family for that support. 

Not the best look!

A letter....

From my journal:

“My Darling Mark…….

Sitting here the night before the second operation and I feel incredibly calm, maybe that’s down to the excitement of the day I just had?! Hmmmm, glad you laughed about the commode incident, and looking back it was pretty funny!

In all honesty, I think it is because of your quiet reassurance  and strength that has got me here today, and the love that you show me by just being you.  It gives me the strength to carry on and get through it because ultimately I want to be stood by your side as your wife one day.

Never have I wanted to be bonded to someone as much as I do to you.  I don’t care for a fairytale wedding, the big parties or the excitement it all brings;  I just want to stand beside you, look at you and feel the intense love I see every time I look into your gorgeous brown eyes.  I think what we have is what I know I have been looking for all my life – true love.

From the moment we met 7 years ago I knew you were special.  I don’t regret the years in-between that we missed together, after all , they have made us who we are today, and today we are stronger than we were back then.  You have completely overwhelmed my life since you came back into it.  I am so glad I came looking for you, relieved you wanted to be in touch with me and so happy that we have found love that is second to none. 

More than anything, I want you to know that I won’t ever stop loving you, I will do everything I can to make our lives happy and complete.  I want to share every minute of every day, live as a couple and still have the freedom to grow and bond.

Thank you for making me so happy.  Throughout all of this pain you have kept me strong and focused and I feel completely loved and cherished by you. 



The picture that kept me going...



With all my heart I will love you always and 
forever. (and a day of course!)

Caroline xx”

The Night Before the Second Operation....

Mark came to visit tonight, we both knew exactly what was ahead and this time the risks were higher.  There was more chance of spinal cord damage, which in turn meant paralysis, bowel and bladder impairment and certainly a life in a wheelchair.  The other side of the risks were outlined again to my by both my surgeon and my anaesthetist who explained the risks moving the heart and collapsing the lung, being anaesthetised for  such a long time, tubes down my throat could cause damage to my teeth (but they would be careful!)

We were assured by Mr B that the operation wouldn’t last as long as the last one, so again, I signed the consents which was almost like signing my life away.  My life in their hands, I had no control over what was going to happen, what the outcome would be and what lay ahead for my future.  I honestly still didn’t feel a sense of dread or worry.  I just wanted it over and done with.  I wanted to go home to Mark and Laura. 

Mark stayed later that night as the nurses didn’t seem to mind, he is suffering with his back but I know he wont miss a visit and will drive over tomorrow after the operation.  Part of me doesn’t want him to drive, I want him to be safe and well and couldn’t bear to see him so tired but the biggest part of me wants to wake up and see him there.

I spoke to Laura before bedtime; she seems to be very calm and accepting of the situation, she has shown so much maturity throughout this traumatic time, I am so proud of her. 

I had text Matt but he was busy and didn’t have time to talk.  I cried.  He clearly didn’t realise the importance of what lie ahead, I wanted, needed to talk to him before the operation.  I wasn’t sure when or if I would get to speak to him again.

He did eventually ring me later in the evening and I reassured him everything would be ok.

I love my children, I am so proud of both of them and relieved I was able to talk to them tonight. 

From my journal:

“So it’s not 22.45pm pre-op no 2.  Apprehensive? Nope!  I just want to face this, get it done and then get on with life.  Just waiting for the sleeping pills and morphine to take effect, listen to the iPod and drift off to sleep – let’s get this sorted!”

I also wrote a letter in my journal to Mark, just in case, and also to express my feelings……