Isolation, swine flu masks and lies

Recovering from a procedure as big as my bone marrow transplant wasn’t easy. After being an inpatient at the Teenage Cancer Trust unit in London for 20 weeks, in September 2010 I was finally discharged! It had been two months since my transplant and I was feeling better than ever however I was still vulnerable and everything I did was a potential health risk. My lack of immunity meant that public transport was out of bounds and often I would have to wear a mask, similar to the ones used in the swine flu outbreak a few months prior, on any outings. Being bald was bad enough but wearing the mask really did make me stick out like a sore thumb and that was one of the reasons I continued to feel isolated despite being discharged from hospital.

It was only 18 months earlier that my family and I were told I was suffering with leukaemia and I asked my sister “am I going to die?” – a moment that stuck in my head throughout my treatment. I’m quite similar to my mum, who suffers with Multiple Sclerosis, in the sense that unless I really need to I won’t show anyone that I’m suffering and even when I was being wheeled around hospitals, so pale that I was nearly transparent and feeling like a dog, I would always respond with “I’m fine” whenever anyone asked how I was, but inside I was scared. I was scared to be leaving hospital. I didn’t know what was round the corner for me and if I’d cope being almost in isolation in my own home – a normal teenage life was right in front of me but I just couldn’t quite get to it. Going back to school wasn’t in the foreseeable future and I was scared that my friends could forget about me.

I was right to be nervous. Less than 24 hours later I was packing my bags and back in London after a spike in my body temperature. The doctors told me I’d be back for two nights maximum which eventually turned into a further six weeks but I was relieved. I knew I was safe there and the people around me understood what I was going through. I didn’t have to worry about anything for those six weeks because I knew I was in the best place for me. Of course I was eventually getting fed up of being in hospital but part of me almost didn’t want to go home.

During those six weeks I faced all sorts of problems. I fought infections, spent countless sleepless nights screaming in pain and praying that I’d get better soon. I was fed up of being ‘different’ and although I was nearly two years into my journey it still hadn’t sunk in that I’d been diagnosed with this horrible illness.

When I was discharged from London for the second time I had to return to the hospital twice a week – on a Monday and Thursday – to meet with my consultant. Because I was unable to use public transport I had to endure long taxi journeys to London, often in rush hour, and a quick ten minute appointment could frequently create a ten hour day – majorly spent in the back of a car. It wasn’t for many months that my appointments were cut to weekly and then monthly but it felt great that eventually I had more time to start living my life.

In my next blog post I’ll discuss Christmas, my first holiday since being diagnosed and an amazing charity called Teens Unite.

1 Comments

  1. You are so brave! I was also diagnosed with aplasic anaemia in 2002 when I was 4, and reading your blog brings back memories of isolation and my long battle. I am down to yearly visits to my GP, and I hope you continue to stay strong in your recovery. Your run has inspired me to try and fund raise for Aplasic Anaemia and to raise awareness. Continue to be strong,optimistic and amazing. x

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