Coming to terms with Childhood Illness

This weeks’ blog is written by guest blogger, Jess!

In a box full of old photos in my parent’s house, there’s a little folder from the year that my family has come to know as ‘The Year Jess Was Ill’. It contains such fond memories as before/after surgery photos of a child’s leg, photos that I remember posing for in front of the radiator in my parent’s bedroom, waiting while my mum angled the desk lamp so that she could get the lighting right.

The first picture shows a kneecap-sized, fleshy growth protruding from the back of my right knee, the second a different-shaped lump surrounded by a black ring of scar tissue and strips of surgical tape. I remember one photo in particular that I found when I was a teenager and I remember it making me feel sick. My mum took it after my big operation. I’m lying in bed with a big grin on my face, holding my pyjama top up to reveal my stomach, which is covered in dark scars and massive bruises in a rainbow of colours from yellow to black. The scariest thing is how young I look. At the time, I knew I could endure being ill because I wasn’t a baby, I thought of myself as a fairly mature-minded individual, who might not know everything there was to know, but who had basically finished growing up. I didn’t know how much of a child I really was.



In reality, I was 8 years old when I was diagnosed with a synovial sarcoma, a rare type of cancer that developed into a large tumour on the back of my right knee. It sat there happily for approximately a year of my life (it started growing when I was 7) and in 2002 I had two operations on it, narrowly avoiding chemotherapy only because my consultant decided to deviate from the usual procedure to try and save me from the horrors of that treatment.

Thankfully, it worked and went (mostly) according to plan. I even recovered much faster than everyone was expecting, especially as I also came down with appendicitis and a kidney problem in the same year. I know, it was a hell of a year…

I’ve always been thankful that I got my serious illness over with when I was little so that it didn’t get in the way of any of my adult responsibilities, which I don’t think my currently stress-addled mind would be able to cope with! But as I’ve grown older I’ve continued to think back on the way that my young age changed my view of my illness and how my experiences might have affected me a lot more than I originally thought.

It’s strange to think of a massive event such as cancer happening so early on in my life, because now I can see all the alternative paths my illness could have taken. I could have endured months of painful chemotherapy, had my leg amputated or relapsed. Or something could have gone wrong and I could have died, and everything I’ve achieved since then (although sometimes I’ll admit it doesn’t seem like much) would never have happened.

But at the time I wasn’t aware of all these other possibilities because I had no idea of the danger I was in. My illness was entirely managed and mediated by adults, either by doctors or nurses or my parents. Often my parents would have consultations with doctors without me, and would then come back to me with heavily edited versions of their words that presented my road to recovery as simple and free of doubt. I trusted them completely and, considering how quickly I recovered, this trust was never shaken. I learnt that everything would be fine so long as I could endure this operation, or drink this medicine, or have this scan. I suppose this is why, even today, if I have an end goal in sight, my determination can be a formidable force to reckon with.

So, even though it was my disease, I was always the person who knew least about it, and I was often aware that I didn’t fully understand the little I was told.  I remember spending a day trying to accept the idea that I would probably have chemotherapy, the idea of which had upset my parents visibly, and eventually telling my mum that I would be ok with my hair falling out, which was the only thing I knew for sure would happen during the whole process. In case you were wondering, I was actually very much not ok with being bald. But I was employing my parents own tactic of reassurance and white lies, trying to protect their feelings as much as they were protecting mine.

Sadly, I’ve recently discovered (with a little help from my therapist) that I’ve copied them a little too well; this is now a tactic I use constantly and it’s becoming evident that it’s very difficult to unlearn. I’ve found it has become an unconscious way of dealing with my emotions i.e. lock them away and don’t let other people know they exist, because knowing upsetting things hurts people and should be avoided at all costs. Cue years of pent-up emotion and sacrificing my own feelings for the sake of others.

This isn’t the only way that my childhood illness has affected me mentally either. In one sense, it has had a positive effect: I feel lucky. I survived a terrible illness relatively unscathed and most of the time I manage to go through my day as if it never happened. I’ve ended up with a renewed gratitude for life, and whilst mine isn’t exactly going my way at the moment, I’m bumbling through it alright. Everything I’ve done since I was 8 years old could have been lost if things had gone differently, so I’m determined not to waste my time. I’m motivated to do the best I can at anything I choose to take on, and prove that I can succeed if I only try hard enough. It’s made me feel kind of invincible at times, with the biggest challenge of my life seeming as if it is already in the past.

But, more and more these days, I’m seeing the massive downsides to this way of thinking. If my biggest challenge is in the past, everything from now on should be easy. Right? Apparently not. I’ve found I’m using it as ammunition to criticise my present day actions and feelings. For instance, it seems ridiculous that I could look cancer in the eyes and still be able to smile, but I now can’t make a phone call or shop in a busy supermarket without the risk of a panic attack, let alone do something more stressful, like a job interview. And my enthusiasm to make the most of life is often warped into a fear that I’m wasting the precious time that I shouldn’t really have had to begin with. That, if someone else had had my life, they would have made better use of it than I have.

And the truly weird thing about the whole experience is that there’s a large amount of being ill that I don’t even remember. Every time I think about it, I have to process it through childhood memories that are often distorted or hazy. The only other sources I have to compare my memories to are a set of brief medical records and the conflicting recollections of my parents, who have tried their hardest to forget what must have been a nightmarish part of their lives. The positive of having only partial memory is that there’s a degree of emotional detachment; whilst I remember when I was in pain, most of my memories aren’t vivid enough for me to remember what it felt like or re-experience it in any way. It’s a bit like the whole thing happened to someone else. There were a couple of moments that were more traumatic and I remember those more clearly, but apart from those I never really expected an experience comprised mostly of blanks to play much of a part in my later life. Ah, young Jess was so naive. jess-4

But, to end on a more positive note, I can now say that I’m aware of where some of my thought patterns and behaviours might have stemmed from and I can start to try and change the more harmful ones. It’s a long road ahead, but I’m beginning with exploring my emotions and trying to be honest about them. And this article is an important step in that journey.


3 thoughts on “Coming to terms with Childhood Illness

  1. Pingback: My scars and me
  2. insidetheoyster says:

    Great post. Totally agree with the fear of adult life and the idea that we’re wasting the time we have left by not grabbing every opportunity. I recently did a post entitled ‘why life doesn’t care…’ and I can definitely see similarities here.


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