It’s been five years since I was first diagnosed with Glioblastoma Multiforme; a type of brain tumour that is uncommon among young people. I am incredibly proud to say that I have achieved a lot in those years despite the odds being stacked against me. Being told at the age of 19 that my tumour is incurable and that I should start thinking about fund-raising 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. Unfortunately though, the little bastard that lives in my head 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.
I guess I’ve chosen to write this blog because I would really like to share my story. If it helps someone else as well than that would be brilliant. I also thought that it was important not to be too negative about my situation in this blog as I don’t think that would help me, and it would probably be quite dull to read: so I assure you that you are not about to read a load of gloom and doom.
Life at the moment
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 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 and allowed me to live life in the most positive way I can. 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. Unfortunately my over-thinking brain does not always make this 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. There is a book that I found recently which is titled “Get out of your head and into your life” I think this is something I would love to achieve although it does seem a little impossible at the moment.
I have tried to create some distractions for this month by planning a few things before I have my scan. January is a pretty depressing month as it is without the ordeal of a scan. One of the things I am looking forward is going to see to the Harry Potter studios. Yes I am a raging Harry Potter fan. I have not heard a single bad report about the studios, only that I should avoid the butterbeer. Point taken, I shall refrain. Planning activities like this helps to maintain a sense of normality. I also 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.
Sometimes I feel like organising activities is pretty pointless as it won’t actually change my diagnosis. However, I sort of think that you could apply that thinking to everything that happens in life and end up doing nothing at all.
One of the reasons I named this blog ‘Fighting Fit’ is because 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. My next challenge is to do the Anglesey half marathon that starts and finishes in Menai Bridge. It is something I have been planning for ages but still have not actually done. Now I am more motivated than ever to do it.
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.
Treatment – Will it work?
At present I am undergoing intensive treatment for my brain tumour. I am on my third cycle of chemotherapy and waiting till February to see If the treatment has been successful. People often ask me how the chemotherapy is affecting me. I think they expect me 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.
Gavin and Stacey
Some things can’t stop you from smiling even when you feel crap. For me one of these things has to be the ‘Gavin and Stacey’ series – I just love it. It’s just something I could watch and watch a million times and still laugh myself silly. I think perhaps living in Wales and understanding the jokes more because they take the mickey out of certain things about Wales or Welsh people, like bilingual signs and welsh people’s fondness of chips and curry sauce. There are so many Gavin and Stacey moments that I enjoy, I couldn’t pick a favourite.
There is one episode in the second series I think, where Pam is rallying up the neighbours to attend a protest against a telephone mast being built in her area. Being overly dramatic as her character is, she says something along the lines of “Do you care that we’re all going to die?!”, Mick (her husband) replies “Well we are all going to die” then Pam retorts something like “Not of tumour brains and brain tumours”. It is one of the few programmes I have watched where a small reference to brain tumours is made in jest and does not make me feel sad about having one myself. This is what I love about the programme, because there is just no real drama and seriousness about it. It’s not particularly intelligent humour but I think that that adds to the appeal. The point I’m making is that Gavin and Stacey is awesome and should be watched by all, especially when you’re feeling down in the dumps.
One thing that I have found with being ill is that people never stop surprising you both in a negative and positive sense. I remember one of our neighbours coming round to the house one day and began attributing brain cancer to the chemicals that Wylfa nuclear power station produce, something silly like that. I think if you’re going to spout something like that, at least back it up with some scientific evidence not something that would be worthy of the Daily Mail. People can be so insensitive. Although there have been instances when people have done things that have genuinely moved me. A girl from my primary sent me such a lovely letter when I was first diagnosed 5 years ago. I hadn’t spoken to her for at least 10 years so it was such a surprise to receive it. Another time a couple of my friends turned up at the hospital I was being treated in completely out of the blue. I had no idea they were coming.
I guess I would like to end this blog by thanking my family and the wonderful support they have given me to get me 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.
That is all I wanted to say.
By Lucy Kate Beesley