I am in my 5th year since being diagnosed with incurable brain cancer. I should be happy right? Well, sometimes yes, sometimes no. Its complicated.
There have been many occasions that I didn't think I would make it this far. I feel incredibly fortunate, but even now I am still picking up all the pieces and coping with a 'new normal'. You learn to cope better with time, but its like grieving for a life lost. There is a new me that I don't recognise and have had to get to know, even if the essence of who I am stays the same, if you look closely behind the eyes can tell a different story.
Sometimes people may just think I should leave it behind me and 'get on with it', but I can't, as, like it or not, its with me every day and I am scarred by it. The invisible disabilities,- the uncertainty,- and 'living in the moment' is how I live. day by day. I have to... and I have little choice.
Every day I experience some type of brain dysfunction that keeps me on my toes despite my best efforts to control it all. Mind over grey matter you could say... though it doesn't always go to plan.
Today I am thinking of all those who have lost their battle as well as all those still fighting. I don't like all these war like terms to describe such indescribable and personal thoughts, feelings, and experiences, but its all we have sometimes as its incredibly difficult to sum it all up with the appropriate words.
How can you? Its all relative and its so personal.
Behind the smiles, laughs and appearances on social media and in public I remain somewhat empty inside, part of me is still missing. I get incredibly frustrated at times when I feel my seizure threshold is low and I can't have the social life I used to have or be as active as I used to be. I am a very introspective person and I can beat myself up at times whenever I am left alone with my thoughts. At the same time I am a problem solver and a perfectionist, desperately trying to find solutions to every problem. What if sometimes there are no solutions? We can still try our best to 'manage' I suppose.
Part of me feels bad about thinking this as I feel I should be happy to just be able to not have grand mal seizures and be able to walk and talk. My speech will get slurred on occasion and I get some worrying sensations, but I haven't completely lost the speech in a while now. Sometimes people misread my body language because parts of my face go numb, but I try to hide this. Inside this pains me and it is a constant reminder that I have limits now.
I try my hardest to have a positive outlook on life, but I experience an empty feeling that I've had ever since my first seizure and then all I have had to deal with since my diagnosis. Then there is my age, the time in life where you typically start to feel about romantic love, a career, a family, etc. My experiences undoubtely make me think long and hard about this and what to do. A cancer diagnosis affects so many aspects of someone's life, and often those around them.
I have experienced profound loss, losing good friends and losing parts of my life that I previously took for granted.
Whenever I hear of someone who has 'lost their battle', a part of me dies a little too as I feel the pain that is left behind with loved ones having to somehow pick up the pieces. I could never appropriately sum up in words how I really feel.
Every day I have a unique pain and internal suffering, yet I have moments of delirious happiness where I look at the simplest things in life with the wonderment they deserve while everyone else seems to just pass by and not see the beauty. Everyone has their struggles, I understand that, but there is light. Life is a series of moments and there is light and shade. Every good story has this, and your life is a story. How do you want it to be? People, places and experiences that make me smile. These are the good moments that I cherish, and I have had that this weekend as I reflect and enjoy the beauty of nature. I am grateful for these moments and I have been able to control my symptoms very well over the past couple of weeks with just a few wobbles. I am also grateful that I have been able to share this indirectly with friends.
There will always be moments of pain and I don't want to hide this any more. I know my symptom triggers, but again, these are scars and it has taken me a good few years to come to terms with this. For me personally it is my brain, which is kind of important, but I still have empathy for others with other types of cancer because there are unique aspects of it that are difficult to understand unless you have been there.
Its all relative and everyone has their struggles, even people without cancer, but there is the other side of it to...
The other side is that it really opens your eyes.
Depending on how you choose to deal with it, a cancer diagnosis can open your eyes to what you are truly capable of and it can allow you to see the world in a different way. You realise that many of the clichès are true and you have an appreciation of the fact that 'life is short' and we must make the most of it. Sometimes, admittedly, it takes time to realise this, even after a cancer diagnosis.
I am incredibly thankful for what I have and to still be here and I'm working hard to stay happy but I'm still working on it 5 years on. I still believe my cancer is incurable and will be back in future, I don't know when, and I don't think this is being negative, as it is what it is. It is an incurable form of cancer and regrettably I had some palliative treatment for it, which for this type of cancer ironically increases risk of recurrence the longer you live. That might sound strange to some, but they don't expect you to live long enough to experience that. Sometimes living longer than your life expectancy puts you under a strange kind of pressure to be happy, and I'm working out what happiness really means to me. This is something everyone probably thinks about from time to time, but I've had a massive kick up the bum and its been a pretty wild ride.
I also feel I have a duty to try my best to make things better for myself and others in future. I promise I will try my very best to do all I can and while I do that I will make efforts to be a better person and to live the life that I want to live.
LIFE IS FOR LIVING!
This is the greatest message of all and one that I feel we all need to remember.
I wish for a world where we can at least say that cancer is a chronic condition we can live WITH than one that we die OF. I think this is possible and it is why I am hopeful I will be successful in an important interview I have coming up on the 22nd of this month.
I wish for a better future for all cancer patients and their families and I'll try my very best to make some kind of impact, however small.
Thank you for all your love and support along the way, it genuinely means so much to me and keeps me sane!