So off I trundled to the JR to find out to cause of my lump and pain. It was very bizarre sat there waiting surrounded by people with casts, boots and frames and being totally free myself. Two of the people waiting I have met a few times before in the waiting room, all with different stories but all with the same Ilizarov nightmare. We share an experience that is very hard to describe in words to others.
After two hours a few X-rays I was reunited with my nutty but brilliant surgeon. The good news is that my bone is completely healed, the plate is still in place and intact. Hooray! But the bad news is that the swelling and pain are caused ‘just because’. I may have twanged it when I slipped or my body may have just had enough of having a foreign object invading it. I’m to go back on March 4th if it hasn’t settled down to arrange a date to have the plate removed. In the grand scheme of things this is just a small bump (if you’ll excuse the pun) in the road that will hopefully be fixed relatively easily.
As everything appears to be as it should I am fine to carry on as normal so have been back to the gym this week. Feeling tired but good!
Our family finished it’s run of bad luck this week with James colliding with a pedestrian whilst cycling through London (said pedestrian decided to try and cross the road in front of him). The result was the pedestrian and James meeting the ground with a thump. James is now sporting a hole in his elbow and the hospital discovered a peace of bone floating around in there. It would seem its an old ‘injury’ though so no action to be taken!
So with a glowing fear in my belly I went to the JR on Monday. Hopefully I would be leaving a little bit lighter and a lot happier. But until the frame was actually gone I somehow couldn’t bring myself to actually believe it would happen.
As planned I had an X-ray and then my surgeon removed the three bolts that we have been adjusting. This removed any weight support that the frame was giving me and so allowing me to put weight through my leg and testing out my newly mended bones. James and I went to the Cafe for a cuppa (and a sneaky Belgium Bun). Sitting there my mind was racing and the suspense but built up like a sky scraper. Would my leg be able to take it? Would it suddenly bend in an abnormal way?
With all these thoughts racing through my mind James and I wandered nervously around the hospital until 1pm finally arrived and we made our way back to outpatients to hear my fate.
The lack of pain in the fracture sight gave us a huge thumbs up, Nicholas was going!
I was shown a bed in the plaster room whilst my surgeon went ‘to find some toys’ ….aka a wire cutter and clamp type contraption used to pull out the pins. I was very aware that yet again I found myself in the middle of the children’s clinic. I has to control myself and not say anything inappropriate. I was given the entonox (gas and air) and away I went. Unfortunately my other world wasn’t far enough from my reality and the removal of Nicholas was horrific.
They start by removing the clamps on top of the two screws and then cutting each wire at both sides to enable them to remove the frame itself. With each cut of the wires the ‘twang’ was felt through my leg inside my bones, not a feeling I wish to ever experience again.
With the wires cut he went about removing each one, simply pulling it out. Each wire takes seconds but it could have been hours. As each pin was removed the emotions built up and up inside me. The fear, the relief, the pain, the exhaustion, the anger. How can one person feel so many things at once?
But now came the time that I had been dreading the most. The two screws needed to be unscrewed from my leg. Laying there whilst he removed them, breathing the gas and air, holding onto James for dear life brought it all back to me. Laying on the car park floor in pain and being so incredibly scared. I have no idea why those images and feelings came back to me. Maybe to show how far I have actually come.
Once the screws were free four and a half months of emotion escaped. I sobbed and the tears flowed. I was finally free, I couldn’t believe I had done it. It was very hard to take it all in.
James and I celebrated that night with fabulously cooked steak and champagne.
That was two days ago and looking back it all seems to surreal. I can finally wear my jeans again, I’m not cold for the first time in a long time. I can feel the smooth coolness of my bed sheets wrapped around my leg at night. I keep stroking my leg like a lost pet! My ankle is quite sore as it had three of the pins directly through it so it will take a while to get over the trauma.
I still have a way to go but I am on the home straight.
The ugly reminder of my frame is still there in the wounds left by the pins and screws. They will fade with time and hopefully with them they will take the dark memories of my journey so far.
It’s coming off on October 1st!!!!
The X-rays on Monday showed that the bones are doing really well and new bone growth is there! Two more weeks or loosening it to keep the slack there and we ‘should’ be good to say goodbye to Nicholas 😀
Despite my obvious excitement it is not a given so I am trying not to build my hopes up. Butnlets be honest, I have been waiting almost four and a half months to get a date for removal, it’s only natural to hold a little belief that things go as planned.
I will still need another X-ray to make sure that the bones look nicely repaired and the new bone growth has continued and then my surgeon needs to make sure that I can put weight through my leg.
I have long bolts that run down between the rings and it’s these that take the weight. He will remove the ones either side of where the fractures were and that’s where the true test will be. Very nervous about this as it will have been 19 weeks since I walked on the leg without support.
I know my surgeon wouldn’t take the frame off before he believed I was ready but in the back of my mind I have the burning question, ‘what if my bones break?’
What if I can’t walk on it?
I have lived with this for so long it is going to be extremely nerve wracking to be allowed to walk without it.
Once we get over the hurdles of weight bearing and walking we need to actually remove the two screws and five pins holding my leg together.
After having one pin removed in clinic I said there was no way I was going to let my surgeon near me with wire cutters again whilst awake.
Well …… I’m going to give it a go I am SO desperate to have the cage removed and knowing that on October 1st it will more than likely be ready I cannot walk out of that hospital to sit and wait for an appointment for day surgery to have a general anaesthetic. He has said I can have gas and air and there are ‘other things’ I can have for the pain (handful of Valium?!).
I can do this! I will be cage free!! Just five pins am two screws between me and freedom ……..
I’ve decided that surgeons are all a little bit crazy. Whilst at the hospital on Monday waiting for my surgeon to stroll in (and he very much just strolls around in a leisurely way) another, rather larger than life, surgeon walks past in scrubs and leather shoes with tassels on. He looks at my leg, smiles and produces a sound that can only be described as an ‘ooooooop’ and then walks off. A few minutes later he walks back and has another peek only this time he stopped to have a proper look and enquires as to the reason for the Ilizarov. Apparently, according to him, my leg looks extremely healthy for one being encased in one of these contraptions. He then congratulates my surgeon with a smile and ‘Good job Bob!’
Nice to know I suppose!
A little note to anyone who might read this who has an Ilizarov ….. If trying to catch a toddler who obviously needs the toilet, don’t catch your frame on the door frame because it REALLY hurts and will probably make you cry ………
Since last week it’s been a struggle to get my head around the not so good news. As instructed James has adjusted the cage four times a day, anti clockwise to loosen the frame and stretch the broken bones out. Once again when I walk the bones feel broken. My leg is painful to touch in that area and a bulge has appeared. I now have a week to wait for the next X-rays and the next plan. I have no pre-conceptions on what my surgeon will see or say. I am not guessing at any dates and it’s impossible to give an exact time frame. I have already become a victim of my own naivety in thinking that the initial 16 weeks was a certain. At the time I needed to believe that after 16 weeks the nightmare would be over, without that dream it would have been a harder road to travel. But the result has been disappointment and a huge knock to my optimism.
Over the weekend I achieved very little sleep, insomnia well and truly invaded my body. It has been increasingly hard to get comfortable as the pain has been slowly increasing. By Monday I was zombie like, I went to bed at 10pm and woke up the next morning at 11.30! I can’t go on like this though so am going to ask my GP for some sleeping tablets just for when I have these episodes of insomnia.
Despite the lack of sleep and growing annoyance at my leg being encased in metal, I have tried to get out and make the most of the sunshine we’ve had. We had a lovely day at Cotswold Wildlife Park, the boys were so cute! I am really enjoying them at the moment, their personalities are really starting to shine. I also braved Witney on Bank Holiday Sunday evening which was brilliant. Gin, good friends and good fun! I have however got yet another maxi dress with a hole in it thanks to the bolts on the frame. I feel a shopping trip coming on when I am frame free!
The boys aren’t sleeping particularly well at the moment, well Henry mainly. He wakes up every night screaming and it takes a while to settle him. He is my sensitive little soul and he doesn’t like change. I think he feels very vulnerable as everything around him, where he should feel secure, keeps changing. First I was bed bound downstairs, then I was bum shuffling upstairs, now I am walking around. Even though I am more mobile I still can’t do as much as I could before and I don’t think he understands that. He is in need of extra cuddles and reassurance. it’s taking its toll on James with broken sleep and a toddler out of sorts. I wish I could take it all away.
I still find it hard to see when friends and family tell me how much I am doing as I feel I am actually doing very little. They have watched as I have progressed to some form of normality and mobility and often tell me how amazing it is that I have come so far.
But the truth is all I try and do is get through one day at a time. I simply do the best I can. Some days my best is simply to not cry. Some days it’s to just endure the pain and discomfort.
I don’t know if my pain levels are any better or whether they have become such a way of life I don’t notice them.
Right now, my best is to just smile and try and get through the remainder of this journey somehow.
This week my right leg has become increasingly sore and with it I have been feeling very poorly and run down. After a sleepless night on Tuesday I noticed that one of my pin sites wasn’t looking very healthy so I called my GP. As they aren’t experts in Fixators he had to call the Trauma Unit who advised that I go to the hospital to have it checked out. Apparently depending on of there is an infection and the severity of it depends on how it is treated. When we got to A&E we noticed that my surgeon was the on call Trauma doctor so we told the triage nurse who, despite asking me what the problem was, didn’t listen to a word I said and totally dismissed us. After a four hour wait to have blood tests and X-rays and then another two hours for the results someone finally decided to tell my surgeon that I was there! He couldn’t understand why they had waited so long to tell him but said that the blood tests and X-rays all looked fine and I just needed a course of antibiotics for the infection. After leaving home at 1pm we got back at almost 10pm.
To say I was exhausted is an understatement. Every bit of me ached and my leg was excruciating after being prodded, pulled and moved from one place to another. It was also extremely swollen after being sat around for so long.
The statistics show that one in ten people with an external Fixator will get an infection. It’s understandable really as you have a constant open wound where each pin enters your leg. I thought I was going to be a lucky one as I have managed 11 weeks without any problems. But alas is was not meant to be.
Having an infection is more painful that the broken bones, it is horrific. And it’s not just the pain in the leg, it affects all you, increased tiredness, sickness. Emotionally it’s torture. I am battling every day and this adds to it. Everything is harder and takes a little bit more from you.
Even as I am sitting here, not moving it hurts. My leg feels like it is on fire, burning me from the inside. It feels so heavy walking is a effort. When I put weight through it the pain spreads and it turns my stomach. At any moment it feels as though my leg will explode.
My antibiotics have been added to the huge list of tablets that I consume daily. What’s another pill to swallow?
Our police officer came to the house today to write my victim impact statement. This is my chance to tell her how this has affected me and it’s something that I think about all the time. But when it came to it I found it really difficult to put it into words. Because of the legal case we can’t talk about the actually collision, just the affect because of it.
I don’t hate her yet I am so angry. I’m so desperately upset and confused as to how she could just leave me there on the floor. How do you put into words to explain to someone that they haven’t just broken your bones but they have broken a bit of you?
We spoke about the affect it’s had on the children and on James. It breaks my heart to explain that the boys look at me in a different way. The whole aspect of our relationship has changed and at the moment I am not able to fix it.
How has it affected James, us? Apart from having to have unpaid leave/sabbatical from work, the stress and pressure of not only being thrown into the role of house husband, full time Dad but also a carer. How do you explain that it’s sole destroying to watch someone take over your life because you simply can’t do it anymore?
Do you talk about the endless hours of hugging and crying? The arguments because I just get so frustrated and cannot express it?
It has bought us closer together but I also think it’s driving a wedge too. The frustration is just building up in me and I can’t explain it to anyone. If I try it would appear that it just comes out wrong and I end up unintenionally offending.
How can you talk when you cannot find the words?
Living life at home being sat in a chair for the majority of the time isn’t as much fun as you may think. It’s strange that for so long I was desperate for close contact with my children but now I feel as though I am coldly rejecting them. The boys want to sit on my lap constantly but I simply cannot take it. Not only does it put pressure on my leg and pull the pin sites but I feel incredibly trapped. How ridiculous does that sound? If I won’t let them sit on me they will stand next to the chair and cry and there is nothing that I can do. I cannot change their focus and sit on the floor and play with them, I cannot stand up and cuddle them. The whole sitation is totally out of my control and I feel totally inadequate. All I can do is add yet another request to my ever growing list and frustrate those around me even more.
I don’t think anyone understands how I feel, this world I find myself in is a difficult and lonely place.
The constant battle to find the balance between resting and doing as much as I can so that I am not such a burden is hard. A burden is how I am feeling more and more.