A collection of powerful real life stories shared by patients, family & friends and caregivers, to raise awareness of VHL, BHD and HLRCC. If you would like to share your story, please email us.
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.
My name is Francesca and I’m 25 years old. 10 years ago, I discovered I had VHL and my life changed. I feel after 10 years of experiencing this genetic disorder I’m ready to share my story and share awareness.
10 years ago
I was 15 years old when I was diagnosed. It took me 6 months of prove to the doctor I wasn’t well I wasn’t feeling well – constant headaches, sickness, dizzy spells; I was told I was endemic, I was anorexic, as I was experiencing dramatic weight loss everything you could possibly think of being diagnosed with. I was losing my confidence in myself as I couldn’t understand or control my own body.
Thankfully, one day my mum refused to take the doctors advice and I was rushed to A & E for all our piece of mind; they would give me a brain scan.
They sat me in a room and said I had a brain tumour. With not knowing much I was weirdly relieved they had found something- I had been ill for so long I had forgotten what it felt like to feel well. Sadly people with VHL will feel this way when there first diagnosed whatever the outcome.
It was removed successfully by the amazing surgery I received at Addenbrookes Hospital with a couple of months physical recovery. No one would ever understand the emotional recovery for not only myself but my families recovery too.
With successful surgery, I was told that I had a rare genetic disorder VHL. My family was screened and luckily I was the only one in my family with the genetic disorder which I was so grateful for. Naturally, I did feel, when I was first diagnosed, guilt on my family and also anger; why me?. I felt anxious too but I now know that is so normal with any illness but as the years got on it has also made me much stronger.
5 years ago
I had been clear for 5 years, completed school and sixth form and decided I wanted to take my career into the beauty industry
I felt healthy and happy until my regular VHL screening at Addenbrooke’s came along- my results from my CT and ultra sound had arrived.
I sat down that day to be told I had to have a Whipple’s Procedure, as they have found numerous cysts in my pancreas. VHL patients may know this is a major operation. During the operation, they would remove part of my pancreas, part of my stomach and Gallbladder. I will not lie to you- when I found out the news, I took it very badly; what was in store for me would change my digestive system and body forever.
It was tough but you fight something inside of you that just fights to get yourself through it.
Post-op, I had little energy and found that patience and rest helped me, along with gentle exercise, swimming, walking the dog with friends and family and a bland diet helped too.
5 years later
I did have another brain operation and thankfully it was removed.
Like everyone I suffer from anxiety and stress daily mostly when I’m due my screening but I also feel so blessed I have these screenings for piece of mind. I wanted to share my story (which I hope is not too negative) to show that you are not alone.
My biggest blessing is having support from my family and partner and having the strength and gratitude for life in general to appreciate everything I have and my body being healthy between those clear scans.
To deal with my health anxieties (which are normal for a VHL patient), I have found working out, eating clean, spending time with loved ones and getting enough sleep helps and heals my body.
I hope my story has helped people find comfort and spread awareness of VHL disease.
It’s difficult to write everything I want to say about Scott and the impact his ordeal has had on my life without it turning into a novel, but I will give it a try.
First of all, I want to make it clear that Scott’s case was unique and one of the most severe examples of VHL that I’m aware of, so please don’t think this is how VHL would normally affect someone – because it most definitely doesn’t.
Like most people with VHL, Scott was completely unaware of his condition – or VHL, for that matter – for the majority of his short life. He was 17 before his condition was discovered by what, at the time, seemed to be a complete accident. He was at home alone, when he lost balance and hit his head on a radiator. After regaining consciousness, he ran to the local hospital, where scans revealed the tumours growing in his brain and down his spine. It later turned out that the loss of balance was due to his condition.
This was the beginning of Scott’s futile battle – and it instantly changed his life. He was forced to drop out of his Uniformed Services course at College and, despite being eligible for disability benefit, he chose to take a job at his local ASDA store.
Rather than take you through all of the treatment, operations and endless weeks spent in hospital, I’d rather discuss the impact he’s had on myself and those closest to him. As you can tell, Scott didn’t take his condition lying down, fighting to keep every ability, freedom and so many things that we all take for granted. Never accepting the easiest option.
Towards the end, Scott was unfortunately blind and unable to stand up. Instead of him complaining, we walked to the pub, with him in his wheelchair. It may not seem like much, but it was a big effort for him to get there and – sometimes quite a painful journey, too. That was his approach, though: he soldiered on through whatever was required to retain as much freedom and independency as possible.
Personally, I’ve witnessed some of the most heart-warming acts of kindness and seen a family grow stronger to deal with this most devastating case of VHL. Scott had many ups and downs, but we spent most of the time laughing through it. He took advantage of the services offered by numerous charities, which made things easier during times of need, and which also gave him things to look forward to, such as a trip to attend the filming of Celebrity Juice.
In all honesty, my entire outlook on life changed, thanks to Scott’s approach to his condition, his family and those closest to him – and also to myself at that time. If I ever encounter a problem in life – something usually deemed important by many, such as not being able to afford a holiday this year or that my laptop won’t work – I simply remember Scott, and any aspect of what he went through to, realise just how insignificant my problems are in comparison.
As I mentioned at the beginning, I am currently training for the London Marathon, which takes place on the 26th April 2015. While I’ve always played sport, I’ve never been a keen runner and the furthest distance I’ve ever knowingly run is 10km. Needless to say, training has been tough and my feet are paying for it as we come to the longest training distances.
Although I’ve had amazing support from everyone, especially my family, I have been close to giving up many times while on the longer runs. Again, when I get to that point, I simply remember Scott and the real pain that he suffered. And then I just get on with it…
I’m now looking forward to representing Scott in London, and I’ve got his name written boldly across my running vest for good measure. I’m not ashamed to admit that, while running alone, I’ve imagined crossing the finishing line in London and been quite emotional. I hope to keep it together when I hopefully do it for real, but I’m well aware that I wouldn’t be the person I am today without him, so have no problem with showing the world just how much of an effect he’s had on my life.
I’m not sure what you will take away from reading this, I imagine it really all depends on your own circumstances. If I had the choice, and it may be a cliché, but I’d like to think it would encourage you to never take anything or anyone for granted – as we never know what could happen tomorrow.
Also, the way you approach every situation, especially the bad ones, leaves a lasting impact on those involved, even if you don’t know them. Although it’s common for funerals to be packed to the rafters when someone passes away far too young, Scott still has a lasting impact on people three years on. If you were to look at his Facebook profile, it still receives regular messages from a vast array of people. His photo was hung up at ASDA by his colleagues and remains there to this day, with the caption “One in a million”. The same can be said of the website set up to raise awareness and spread his story, which has consistently received views since day one.
If I can have even half of the impact that Scott’s had on so many, then I’ll be a proud man.