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