The surgery diaries: How it all began

The day I found out that I would actually need the surgery, I cried. I’m not proud of it, but I did.

It wasn’t entirely unexpected. My consultant and other doctors had been trying a series of other treatments to help me for ages, but now that I had stopped growing it was decided that it might be time to consider some operations. So, off I went for something called a gait analysis where the way I moved would be thoroughly analysed at a special clinic, after which a report would be complied suggesting what they thought would be the best course of action. After the tests, my family and I all talk of “ifs” and “maybes”, but really we all knew it was a case of “when”.

Thankfully when the results did come through, the doctor who was dealing with this part of my treatment called us at home first to deliver the news and asked us if we could attend an appointment. Like I said, I burst into tears. I felt like I’d failed for being the one that allowed my knees to twist in the first place. Then, I felt ashamed for crying because I knew that I wouldn’t be out of action for all than long, and I was already so much better off than so many others. I felt all this within the space of about a minute. Then came hugs from both my parents who told me that it was perfectly normal to feel both of these things, and that was why the doctor had let us know so that we could have some time to deal with the idea.

Like a good girl I sat and came up with a list of questions to take the appointment but really the answers wouldn’t have made a difference. I already knew that I was going to agree to whatever they thought was best for me. I couldn’t deny that my aches and pains had got worse over the last couple years. Because of how I was standing I was getting migraines that I was given pain killers for and, at the around the time the I first began meeting with the man who was to be my surgeon, I was having intensive physio on my shoulders. It wasn’t just about my legs anymore and if someone was offering me a way to make the things a bit better I was taking it.

The next couple of months passed by in a whizz of appointments and a blur of revision. I was due to take my GCSE exams (the ones you take at the end of highschool) in the summer so that had to be my main focus. In fact I didn’t really think about my operations at all for ages. Then, one day, in the middle of one of my science papers, it hit me. Oh, God, two more to go then I’m going into hospital in two weeks PANIC!!

Somehow, I still passed the exam.

If I’m honest the enormity of what I’d agreed to didn’t really hit me until I had an appointment with an occupational therapist at the hospital about getting the house ready for my new needs. There were talks of installing a ramp for my wheelchair, and providing us with a remote control bed that would go in our dining room, which would be my room for the next few months because I wouldn’t be able to get up the stairs. This also meant that I wouldn’t be able to get upstairs to use the loo either. Great. That would mean I’d be using a commode for most of the time. I’ll let  you fill in the blanks on that one yourselves.

This didn’t make me feel better.

I spent the rest of the day apologising. It was then that I realised what I’d signed my family up for too. Oddly enough, they didn’t look anywhere near as repulsed at my impending inability to reach the toilet as I did. They just wanted me to do what I thought was best.

That day, I realised just how awesome they all really are.

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16 thoughts on “The surgery diaries: How it all began

  1. I can relate so much of what you have described. I too felt like I was letting my family down, a burden on them. It is clear that they don’t feel that way, they just want to help. The earlier that is recognised the better, they are a great support so we may as well embrace them.

    I hope you are having a good day, Steven

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    1. I think the whole process made me appreciate and love them even more if that’s possible! They’ve all said they’d help me do it all again if I needed anymore.

      I’m having a lovely day, I hope you are too, Steven.

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  2. This was a good post for me to read. It is interesting and informative to hear of the experience of someone further along in the journey than we are (although a little confronting to look at some of what may lay ahead, and the inevitable discomfort that is likely to be there despite our best efforts of striving to avoid, what may at the end of the day be unavoidable!) Right now we are hoping to dodge the bullet of potential hip surgery and yet feel lucky that we haven’t already had to face this even though many we know have had to have it at a much earlier time. Back to taking one day at a time I think! By the way have you had your surgery or is all this happening for you now?

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    1. I wish you all luck for your journey that you are all taking. I hope that you manage to avoid the hip surgery, I feel that taking it one day at a time will be a good attitude to take. This all happened 6 years ago when I was 16. I’m now 22.

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  3. I can relate to this so much, I had loads of surgery when I was younger, and major surgery at 13, where the recovery was long and tough… The thought of having surgery now I’m older terrifies me, as I don’t want to lose my independence and have to rely on other people.
    Love the blog, can relate to so much!!

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    1. I’m glad that you like the blog! I can relate to your feelings about having surgery now that you’re older. I’m hoping that I won’t need anymore because I’d worry about how I cope, but if it was for the greater good I’d still consider it.

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      1. I would consider surgery again if it was for the greater good, ie if there was no other option and if it would limit the damge that cp is doing to my body in the long term. At the moment I try to manage it with a mixture of physio, orthotics and medication. All things I can basically be in control of. Thats wat I guess my fear of surgery really is, is the feeling of not being in control

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