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……

The days prior to the Second Operation

Days blurred into one another once the news of the second operation came. I was back into my positive frame of mind, was happy and upbeat and not worried about it, after all, what could I do to change things?

Had visits from Mark, his mum and Tracey.  It’s so good to see everyone and my new family are wonderful.  There isn’t anything that is too much trouble, they bring me things in, at the moment I don’t need clothes but soon, when I go home…

Mum and dad have been good in bringing Laura over to see me, it gets very emotional when she leaves and I try and hold it together, she has a lot ahead of her with college and being away from home at such a crucial time, I don’t want to let her see me upset, I can cry later.

Still living on morphine and a cocktail of painkillers, if it gets too bad I can have orimorph which is administered by two nurses.  I try and only have that when necessary but sometimes it really is necessary!!

The chest drain has finally been removed, it was watched by other members of staff as it’s pretty fascinating on the ward.  One of the nurses was disappointed not to see it removed but I reassured her there would be another one along next week!  They said it wouldn’t hurt – ha, the lied. It did!  And to see a tube of about 12” being removed from your chest is pretty awesome in a morbid sort of way!  The relief of freedom now though is intense, I can more (not very far!) but the pipe is no longer restricting my movements when I turn or stretch.  I know this feeling of freedom is short lived but it’s a great feeling nonetheless. 

I also had to get out of bed today and use the commode.  The first time since before the operation as I have been attached to the drain.  Was given lactulose and morphine to help.  I can honestly say, it was more painful than giving birth and without going into detail, I managed to use my bowels, which on neurology, is a major achievement.  Spinal cord injuries often result in the loss of bowel and bladder movements and to be able to go to the toilet is pretty good.

I stayed out of bed now that the drain has gone and sat in the chair for a while.  The legs are stronger but the left leg still wont work, it has to be lifted in and our of bed and is a dead weight.  Hopefully the second op will change that. 

I love being on the ward and chatting to people.  I am now in a room with Margaret and Janet.  We have such a laugh and stay up late talking which is just as well as sometimes the nurses are so busy its late before we get sorted for bed. 

The operation is scheduled for tomorrow, Wednesday 14^th September……

This is what I am having done again :-)

9th September - my Son's Birthday

Today is my son’s birthday; he is 19 years old and lives with his dad due to work and study.  We don’t see each other a lot but he does like to go to the football matches with me, the last one though was April 2011 in Leeds.  It was a good day with his friend Will and we had so much fun, I love being part of his life and am pleased he wants to include me (even if it is because I drive us all there!) 

I rang him this morning to wish him happy birthday and we both got tearful, he was getting ready for work and couldn’t talk for long but I told him I loved him and hoped he had a good day. The rest of my day was a downer, I was low and tearful, missing home life so much.

The high point of the day was that I finally had my hair washed over the end of the bed.  It was a strange feeling but it felt so good.   I had to lie with my head at the top of the bed while they used a bowl and a bag to wash my hair, strange way but it worked!  I feel so much better for that but still the mood is low.  A lot of spare time on my hands thinking about things.

I had a CT scan today, I don’t mind them, it was easier than the MRI and will see what Mr B has to say when the results come back.  I like getting off the ward even if it is for a scan, it breaks the day up and I can usually have a laugh with the porters who are lovely. 

Dr Razak came in and chatted about the scan, he was vague and said that Mr B would be in shortly to explain more. I tried not to worry….

Mr B came in with bad news.  My world collapsed around me while I listened to him telling me that he hadn’t been able to get all of the disc out of the spinal cord.  He was unsure why this had happened but the outcome was that I had to go back into surgery for the same operation again and he was scheduling it for the 14th September.  I had to go through it all again…….

Extracts from my journal that evening:

“The pain from the chest drain is immense, it has to come out soon but knowing I am having to go through all of this again…. I can’t.  I just don’t want to.  I want to go home I need to get back to life outside.

I don’t want this anymore, I just can’t take it.  What have I don’t so bad to deserve all of this? Life is crap, I want to bail out now, I can’t take any more”

Later that evening after a visit from Mark, Leigh and Chloe (his son and girlfriend) I had picked up the mood, I felt happier, had laughed a lot with them and it was the boost I needed.  Today was a setback, nothing more.  I needed to focus and get back into my positive zone ready for the following week. 

I rang my best friend Rachel, we cried and then she gave me a stern talking to,  she wouldn’t let me wallow and basically kicked my arse so I could see a bit of the old Caz!   I was allowed sleeping pills tonight and hoped that I could at least be allowed a decent sleep..

Leeds United Match

Days following the Operation

The first day I awoke I was feeling upbeat and positive; the right leg had feeling and sensation and can move, the left leg has feeling but I can’t lift it off the bed.  The doctors and their entourage came round on a morning and I could push away with the left leg but that was all.  They are confident that it will return and I am hoping the feeling is due to the fact I have the epidural in and it is stopping things from working.  An average day on the HDU ward is busy, the nurses are lovely but due to the fact I am covered in tubes and wires and can’t get out of bed, I am privy to a bed bath.  Oh the joy!  You lie there completely unable to do anything, washed and dried by the nurses and carers before having the bed changed.  The slide sheet on my bed is used to move me up the bed, and I have to be turned by the nurses to slide a sheet under me.  Doesn’t sound too bad but when you are moved onto your side with a tube sticking out of your chest, the pain is immense.  This is something that has to be done every day and I slowly get used to the pain and feeling of it.  I really don’t like the chest drain, I can see it filling on the side of my bed and hope it isn’t too long before they remove it. The staff on the ward are fascinated by it as they don’t usually have them on the ward; they are usually removed in theatre so I feel like I am pretty important!

Despite the discomfort of the bed bath, it’s good to feel clean and get a clean hospital gown on.  If I thought having children would compromise my dignity then having a bed bath supersedes that.  You are at the mercy of the nurses, if you get a gentle one then you are lucky, however, there were occasions when a nurse could be a little too rough and you had to remind them you were missing a rib and that area was sensitive! I had to lie on the bed, sheets soaking where i had been lathered in water and soap, no area untouched, literally, and having to rely on two nurses to wash and move you because you are incapable, there is no such thing as dignity therafter.

I am relieved that the bed is electric and I can lift myself up and down as I want, the leg also raises so I can move the position of my legs if they are starting to ache from the constant same position.  The nights that I slept reasonably well were the worst for the morning as my whole body would wake up stiff and painful, and the only way to move would be by the use of the bed.  This became invaluable throughout my time in hospital.

Days are long on the ward, it really is hard work doing nothing and I spend my time trying to read my huge pile of magazines and books but the attention span is zero and it is hard work.  I sleep a lot during the day which is detrimental to the night when 2.30am arrives I find I am always wide awake!

Hospital food is pretty good and the steroids they have put me on have given me an immense appetite.  We also get a regular coffee which is put in a beaker not dissimilar to what a child would use with a spout or a straw!  I did laugh to begin with but with limited movement it was pretty useful!  We used to have to fill out the food request form the day before and you could guarantee that I would have no clue what I had ordered, therefore making every day a surprise! (sometimes good!)

After a couple of days, the leg still wasn’t working but physio came round to get me out of bed. Not an easy task at all with a chest drain and the feeling of dizziness.  The right leg has the strength and the left leg is still useless. The effects of having the epidural removed are slowly wearing off but still the left leg doesn’t want to move.  This is quite a worry now as it feels like a dead weight.  I have to rely on the nurses to help me move on the bed and on a night, they have to settle me down and “arrange” my leg with a specially fitted boot on my foot so that I don’t get “foot drop”.  Still, I think things have to improve, it’s early days.

I have had a scan to see how the spinal cord is looking now so will await the results, I am sure everything will be fine and I will be on my way home soon.

Mark visits me every evening after work.  He goes to work for half past seven and then gets to Sheffield for a 6pm visit, sometimes he gets here a little later but he gets here.  I miss him so much; the day is long without seeing anyone so evening time is wonderful when I know he will be here.

My friends Yvonne and Don have also been to visit; they have a week off and called in to see me, worryingly Don brought in his camera knowing how I HATE being photographed, and managed to get one or two pictures of me looking my best – not!  Looking back now, I hardly recognise the person in the bed lying there with tubes and wires, seems a lifetime ago.

It’s good to see familiar faces though as I miss home life and normality.  I am sure it will be back to normal in no time once I start physio and get moving.




After Op One



The day of the Operation

What can I say? I slept through the entire thing! 
Ok, so that makes light of it somewhat. 

I remember getting up and having a shower, thinking it could be the last one for a few days, washed and dried my hair, no matter what, I wanted to feel “human” even if it was just by making sure my hair was done!  Once settled into bed, I had pre-meds and at that point would have loved a coffee but wasn’t allowed anything at all.   My anaesthetist came in and told me there had been a change of plan and I would be asleep for the epidural, so it was one less thing to worry about.

I thought about my children and Mark and all the plans ahead.  I wondered if Simon Bates would play “Our Tune” on his Smooth Radio show that morning; there was no point at any time I didn’t feel confident this operation wouldn’t work.  After the pre-meds started to work I don’t remember too much of the day.  I don’t remember being anaesthetised or any of the team; I don’t remember even talking to them even though I apparently did!  Guess some things don’t change and talking is one of them!

Anaethetising me took a few hours, I was then opened up with a cut at the side of my back leading into the chest cavity, it's only a cut of about 8 inches long and looks like a smile to me :) Rib 6 was removed and then used later on in grafting; I guess then each relevent surgeon did their bit, moved the heart, collapsed the lungs and then Mr B was able to go in and do what he needed to remove the calcified disc before they put me back together, stitched me up and sent me back to Intensive Care.

So, thirteen hours later I was woken up in intensive care to find tubes attached to my neck, chest and arms, ECG wires monitoring the heart and the chest drain, a rather unsightly box attached to the side of my bed, helping drain the lungs as they re-inflated.  I couldn’t understand why my shoulder hurt so much but later I was because I had been laid on that side for the entire operation, in fact, that was the only pain I felt at that time!  The nurse who was looking after me, Debbie said that Mark was waiting for me outside – wow! That was an immense feeling, I wanted to see him so much. 

I can't explain the feeling I had when I saw him, complete and utter love for this wonderful man who had waited hours,  even now it brings tears to my eyes when I think of the relief I felt that he was there and the relief he must have felt when I woke up.  I didn’t know what the time was, perhaps something like 10.30pm and they allowed him to stay with me for a short time.  He was exhausted, emotionally and physically after doing a full day’s work and then driving two hours to the hospital and having to wait for me to come round.  I was just so happy to see him, and felt no pain due to the high level of medication being pumped through my body.

When he had left, I was left in ICU to think, and wondered why someone would want to enter a relationship knowing they could possibly become my full time carer should the worse case scenario happen.  He wants to look after me though, he wants to be part of my life, the good and the bad.  I don’t know if I have ever felt so much love for one person, he is caring and loving and despite being a man and not wanting to show emotion, I know by looking into his eyes how he feels .  When he stood smiling by my bed as I came out of surgery he said “gonna marry you” and despite my past failed relationships, that is what I want more than anything else in the world.  I cant wait to share the rest of my life with him and with those thoughts I drifted off into a drug induced sleep. 

Bouffle, bought by Mark to keep me company