Surgery is scary whether it is a minor procedure or a major one. I have had my fair share of operations, my first one being when I was 8 years old. Since then I have had 7 operations, which to some people may be quite a lot but to others, this would be a small number of operations – some people have to have operations every year or even more than that. I have not gone more than 2 years without having to have another operation and because of this I have lived my life in anticipation for when the next thing goes wrong, and I need to have another operation.
I have spent a long time living my life in fear of the next big thing that is going to affect my physical capabilities. The first time I noticed a change was when I started to experience intense pain and achiness around my knees and legs after doing exercise. The pain was so bad I often spent several nights in a row with near to no sleep. No matter what I tried to do or the number of painkillers I could take the pain was constant and really impacted me mentally as well.
Since then, I have experienced more and more changes in my body that have resulted in further operations and so now, whenever I feel something new or notice something different in my body, I live every day knowing that I will end up having to have surgery at some point. When I was 14 I noticed my ribcage slightly poking out of my body on the right side which was a terrifying thing to notice because I knew this was not normal but at the time I was too afraid to say anything to my parents or doctors because I was terrified of the possibility of surgery. But the scarier part of it was not knowing why my ribcage was in this position and whether it was going to get worse.
Turns out that the reason for this was because the tumour in my lower spine had grown larger and was eroding and weakening my spine so it could no longer stand up straight and began curving, causing scoliosis. As with all people with scoliosis I was told that I was going to have an operation in order to straighten my spine or at least stop it from getting worse. What I did not realise is that my scoliosis was more complicated to treat than others because of the position of the tumour, therefore, the metalwork used to hold my spine had to be custom made. 4 metal rods in total were used, 2 either side of my spine and a further 2 connecting from the back of my ribcage to my pelvis. Whenever I get a glance at my back in a mirror now, I cringe and hate looking at it because all I can see are the bolts and screws protruding through my skin.
I was far more scared of this operation than any others I had before. I think it was down to the fact that I was more aware of what was happening now, and I built up so many ideas and outcomes that could happen in my head that I became overwhelmed. After 12 hours of surgery, I was told that the surgeons were unable to straighten my spine fully, but the scaffolding should stop the curvature from getting worse. But that did not get rid of the fear of something going wrong again because now I live with a whole new set of thoughts that go through my mind listing all the things that could go wrong whilst the rods are in my back.
The process of having this surgery before, during and after whilst I was recovering because there were some huge changes instantly that I noticed due to the operation. I was harder to do a lot of simple day-to-day tasks on my own. I could not shower or wash myslef for a few months after, I started to struggle to put my shoes and socks on a lot more, I also had to learn to walk again, because the metalwork in my back threw off my body movements and balance. I often think and blame myself for letting my spine get as bad as it did because I noticed a difference in my posture but was too afraid to mention it.
If I did mention it would I be in a better position today than I am? That is a question I will never know the answer to but it is because of this experience alongside the other surgeries I have had that has meant that I have learnt that I need to stop living in anticipation for the worst outcomes. Start taking opportunities to do new and exciting things as and when they come. Stop saying no to things just because you feel like you may not be very good or may not be able to, say ‘yes’ to as many opportunities as you can. You may not enjoy everything you try but the only way we find things we enjoy is by trying them for the first time.
Some days are better than others, as it is with everyone, but it will be better if we all stop living in fear of what might happen and start living in hope to find new and exciting experiences.