"The bad times that I've gone through have only made me appreciate life more" by Barry Moloney, VHL patient

For me, being told I had VHL was a very insignificant thing. I remember brushing it off that morning my mam told me. She had been worried about telling me for weeks. She had sleepless nights just thinking about breaking the news to me. To be quite honest, from what I remember I didn't care at all. I didn't care because I was only 11. I had bigger things to be worried about than VHL. Bigger things like my maths homework, and trying to do last minute piano practice before my lesson the next day. By the time I was 16 I realised how bad things were going to get. For years I didn't even think about the fact that I had a serious illness. Being told I had cancer hit me hard. I was 18. People think that being 18 makes you an adult but I was not an adult that day. I was a scared little boy.
I was sitting in Dr O'Donnell's office with my Uncle Brian. She told me the cancer was very small, that it was very early stages. She told me how good this was. In a way I was so relieved to hear that, but on the other hand, Cancer is Cancer. It doesn't matter if it's small because we all know that no matter how small it is it's going to grow and it's going to spread. On some level I knew this was coming, before the annual scans I tried my best to prepare myself for the worst. On another level I was completely shocked. No matter how hard you try to prepare for something like this, you never expect the worst to actually happen. To be completely honest, a part of me just wanted to get on a plane and leave. Just get away from it all. I've had this feeling many times since then. The day I was told the cancer had to come out. The week before the surgery. The day before the surgery. The morning of the surgery. All I wanted was to get away. Leave it all behind. Not be in pain. I of course, came to my senses and realised that this is my life now. If my Mam can go through 3 major surgeries and fight every single day of her life, I sure as hell can do it too.

I can tell you now, Cancer is not fun or romantic. Movies tend to romanticise it quite a bit when in actuality it's the most heartbreaking experience anyone could ever go through. I'm going to use the clichéd statement of "you never think it's going to happen to you". You really don't. You go along with your life thinking everything is going to work out until that day. It's hard to describe. It's almost as if  you faze out for a few moments and "your life flashes before your eyes", another overused but completely true statement. I thought about my family and friends. I wondered how I was going to break the news to everyone. I thought back on when I was a kid, when the hardest thing in my life was my homework.

That moment the anesthetist says "Bye Barry, see you later", you don't even have time to realise that these could be the very last words you will ever hear. I made it out like this surgery was no big deal and that I was completely fine having it to all the people I love, knowing full well to myself that this surgery could very well be the end of me. Weeks before the surgery I wrote a letter. I really would suggest everyone should write down the things they need to say to the people they love. Looking back now though it probably wasn't very good for me to be thinking about death at that stage, but that's the thing with cancer. You never know what could happen. With me, the cancer was close to the major blood vessels in the kidney. No one can say that you're going to be ok and be completely sure. It's impossible. I'm not a child anymore. I've seen enough in my life to know things don't always go to plan. Whether it's a post operative infection or a post operative bleed. There's no way of knowing what's going to happen in the future. No matter how much you pray, what's going to happen is going to happen.

I spent hours every day for a week after my surgery praying to God to stop the pain. I cried. I'm not ashamed to say it. I'm a teenage boy and I cried in front of my Aunt and Uncle, in front of nurses, and even in front of one of the most beautiful doctors I have ever seen in my life. Men need to know there's nothing wrong with crying. People don't think any less of you for doing it. So many men I know hold back tears no matter how much pain they're in. I spent hours praying, but there was nothing. I even pleaded to God to "take me away". Being in so much pain that you are literally praying for death is not a place I ever want to be in again. I have so much in my life. I have so many people in my life that I love, who love me. However, at one point that all went out the window. There's something about pain. It's a strange thing. It can make you want to throw your whole life away just for relief. At that moment I was in so much pain and I just wanted it all to end. It was a pain I've never experienced, a pain I never even imagined existed. It was what I imagine a gunshot wound or a stab wound feels like. If it is they really don't convey it very well in the movies. I screamed and shouted, all I remember is seeing nurses and doctors running towards me. Everything was hazy. I couldn't hear anything, all I could focus on was the pain. They got me into the bed and looked after me expertly. I cried. I stared into the doctor's eyes.  She held my hand. There's something about another person holding your hand that really helps you. A comforting act like that from a doctor nowadays is very rare. I realised at that moment when all these people were around me helping me that I wanted to live. I wanted to see my Mam's face again. I wanted to see my friends, the rest of my family. I wanted to put on my uniform and sit in the Marys' office with the Red Cross. I wanted to sit in a boring plant lecture where all we do is talk shit about how "we're never going to need to know this stuff". I wanted to sit with my housemates eating toasties, drinking tea and talking shit about our friends. I honestly just wanted to be at home.

That was the worst pain I had ever felt. That's what I thought, until December 4th 2015. That

was the day my incredible Mam, the woman who raised me and my two big brothers by herself while fighting this awful disease, passed away. She fought everyday for 11 years. She went through three major and extremely life-changing surgeries over the 11 years. She spent the last 4 years of her life on dialysis for 4 hours a day, 3 days a week.  She was the strongest woman I have ever known. She lost her husband to cancer and still managed to successfully raise three lads all by herself. VHL changed her life completely. That day in the hospital was like a paper cut compared to this pain. I lost a part of me the day she died.

Months before her passing Marie vowed that she would climb the Queen Maeve Trail up Knocknarea Mountain, Strandhill.  That dream of hers never came true as she became too sick. However, her family and friends will honour her memory by taking part in Strandhill’s 32nd Annual Warrior’s Run up Knocknarea Mountain on the 27th of August. All the money raised will be donated to the VHL Alliance to find a cure for this disease so other children don’t have to lose their parents so soon in their lives.

VHL has taken so much from me, my childhood, my Mam and even part of my body. My life has changed dramatically since that winter morning when I was 11 years old. The story doesn't end there. I know that eventually VHL could take my life, but it hasn't taken it yet. I still have a whole life to experience. The bad times that I've gone through have only made me appreciate life more. I'm going to fight as hard as my mother did to the very end.

VHL Awareness Month

With VHL Awareness Month now in full swing, here's a few ways you can get involved:

• Print our poster explaining VHL disease. 
• Use the VHL Awareness Twibbon profile phot. 
• Share your #vhlawarenessmonth photos and selfies. 
• Share our Facebook posts to spread the message. 
• Wear your VHL t-shirt and pin badge with pride. 
• Fundraise! From sponsored runs to office/school bake sales, there are plenty of ways 

Thank you for your continued support.

VHL UK/Ireland