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If the human brain were so simple that we could understand it, we would be so simple that we couldn’t.

Emerson M. Pugh

Lucy's Story


Five years ago I was diagnosed with a Glioblastoma Multiforme; a type of brain tumour that is uncommon among young people.  Being told at the age of 19 that my tumour is incurable and that I should start thinking about fundraising for cancer charities is not exactly how I planned for my life to be. Although things have turned out this way, I still feel grateful that I have lived four relatively happy years in remission and I am incredibly proud to say that I have achieved a lot in those years despite the odds being stacked against me.

 

Unfortunately though, the tumour has decided to rear it’s ugly head for a second time. Once again, my life has been turned upside down and I have lost a lot of my independence. I am no longer allowed to drive and I have lost the job I had in a school that I was working at.

 

Taking back some control

 

It is difficult to describe how life is at the moment. In some respects life is just as normal as ever. I do voluntary work, I see my friends, I exercise and do generally normal things a 24 year old would do. The problem is that a lot of what I think, feel and do is centred around anxiety and fears about what is going to happen to me and the people I care about the most. Having gone four years in remission, I started to feel that almost invincible feeling that I believe most young people experience to differing extents. It is that carefree belief that by being young and strong you can overcome any obstacle thrown at you. In my head, I knew that my cancer was likely to come back, but I never actually believed it would. I think that having that belief has actually spurred me on throughout the years and allowed me to live life in the most positive way I can. And, at the moment, I am making my life as busy as possible, ensuring that I am doing lots of activities as a distraction before my upcoming scan.

 

I think that having cancer only makes me more determined to do things, especially things that people don’t expect you to do because you’re ill. When people talk about fighting cancer, I tend to think that that there is a bit of a suggestion that you have some control in beating the illness. I believe that it can do no harm to put your body in the best position to fight it. But I really think that ‘fighting cancer’ is basically not allowing it to take over your life and stop you from doing the things that you want to do.

 

The anxiety

My over-thinking brain does not always make getting on with things so easy. I tend to over-analyse things to the nth degree. I am the type of person who could spend hours thinking and mulling things over. This is quite a frustrating habit to deal with because I feel like it can stop you from living life spontaneously.

 

At present I am undergoing intensive treatment for my brain tumour. I’ve just had my third cycle of chemotherapy. People often ask me how the chemotherapy is affecting me. I think they expect me to tell them how awful and run-down I am feeling but in all honesty I don’t feel any different after taking them. The only thing I suffer from is a little bit of fatigue and it’s not enough to stop me from going out for a little run.

 

What I do find hard is not knowing what the chemo is doing and whether it is working. It is so difficult to accept that I’m not going to know what’s going on in my brain until the scan. If I get a headache or my vision seems a bit fuzzy it sets my imagination racing. I think to myself that the treatment must not be working and my tumour is growing. To deal with this on a day-to-day basis is so hard.

 

Fighting Fit

I genuinely feel really healthy and fit most of the time. If I’m being perfectly blunt about it, I am probably more fit and healthy than the majority of the population. I run about 3-4 times a week and enjoy a variety of sports. Part of why I do what I do is because I absolutely adore sport and get so much out of it. The other reason is that it really does help me stay sane. When I play tennis or netball I am so focused on what’s going on, thoughts about my problems tend to stay at the back of my mind until I’ve finished. Being able to do lots of exercise and still play sports is something not everyone would be able to do in my situation. Lots of people I have met with brain tumours can be quite physically incapacitated as a result of the way a tumour affected their bodies. I can’t imagine how hard that must be to not be able to do the things you were physically capable of doing before, and I feel forever grateful that I have not been affected in that way.

  

The support

My family have been wonderful in supporting me  to get to where I am today. I don’t like to sound cheesy but I really don’t think I would have coped so well if they hadn’t been there with me every step of the way. A lot of good things have happened from being ill as well as bad. I do remember saying when I was initially diagnosed that I would no longer be able to do all the things I wanted to do. To some extent that is true, but I also found that there were some things I never ever expected that I could do – but I did.

Lucy writes a blog about her experiences of living with a brain tumour. Click here to read.

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