Your Story

Your Story

Whether you are a VHL, BHD, or HLRCC warrior, a family member, carer, or friend who sees the daily battle in their faces, a fundraiser inspired to complete a challenge, we want to hear from you!

#vhlawareness #vhlyourstory #vhlawarenessmonth #vhlukireland #vhlwarrior

By sharing your story, you will play a valuable role in spreading awareness of VHL, BHD and HLRCC disease and providing hope and inspiration for other patients and individuals affected.

Click here to submit your story or email us at uk@vhl-uk-ireland.org


 

Your Story Submissions

Rad & Phil’s Story

Our names are Phil and Rad. We have been married for nearly 2 years and been together for 7. Rad was first diagnosed with VHL in 2015 after a brain tumour operation in January 2014. In Total Rad has under gone 4 brain surgeries, 3 eye surgeries, 3 kidney surgeries and having a spinal tumour investigated currently. VHL has taken away the feeling in half of his face, has taken both of his kidneys but has not taken away his spirit or his strength. Together we strengthen each other by staying positive and surrounding ourselves with influential people.

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Rad & Phil

VHL Patient & Husband
Sep 8, 2019

Rad & Phil’s Story

Our names are Phil and Rad. We have been married for nearly 2 years and been together for 7. Rad was first diagnosed with VHL in 2015 after a brain tumour operation in January 2014. In Total Rad has under gone 4 brain surgeries, 3 eye surgeries, 3 kidney surgeries and having a spinal tumour investigated currently. VHL has taken away the feeling in half of his face, has taken both of his kidneys but has not taken away his spirit or his strength. Together we strengthen each other by staying positive and surrounding ourselves with influential people.

We have had a lot of personal issues to deal with recently some work related and some family related but we have stayed strong together and we know that together we will take anything that I thrown at us and deal with it with our strength tenacity and positivity. We have always read stories from fellow VHL Warriors and these have helped us develop our strength to deal with multiple diagnoses of these cancers. Today we learn from what it has taught us to make us stronger. Tomorrow we use the strength from yesterday to fight this disease another day. With the help of some very special friends of ours and some family members we have become the love story that so many of our friends and family tell to their friends. In sickness and in Health.

Rad and Phil xxx

Rad & Phil

VHL Patient & Husband
Sep 8, 2019

Ian’ s Story

Why I’m running the London Marathon 2015

by Ian Lowe

I guess I’ll start by telling you a bit about myself and my connection to VHL. My name is Ian, I’m a 25 year old accountant from Manchester and I’m currently training for the London Marathon in memory of one of my closest friends, Scott, who lost his battle against VHL in 2012 at the age of 23.

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………

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Ian Lowe

Friend of VHL Patient
Sep 8, 2019

Ian’ s Story

Why I’m running the London Marathon 2015

by Ian Lowe

I guess I’ll start by telling you a bit about myself and my connection to VHL. My name is Ian, I’m a 25 year old accountant from Manchester and I’m currently training for the London Marathon in memory of one of my closest friends, Scott, who lost his battle against VHL in 2012 at the age of 23.

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…

 Sponsor IanI’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.

Ian is running the London Marathon on 26th April 2015 for Help the Hospices, click here to sponsor him.

To visit Ian’s website and to find out more about Scott’s story click here.

Ian Lowe

Friend of VHL Patient
Sep 8, 2019

Fran’s Story

“I appreciate everything I have and my body being healthy between clear scans”
by Fran Bechelet, VHL patient

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………

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Fran Bechelet

VHL Patient
Sep 8, 2019

Fran’s Story

“I appreciate everything I have and my body being healthy between clear scans”
by Fran Bechelet, VHL patient

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.

Francesca X

Fran Bechelet

VHL Patient
Sep 8, 2019

Frankie’s Story

LIFE DOES NOT GET EASIER, YOU JUST GET STRONGER

MY VHL story by Francesca Bryant, 28

Where do I even begin?! Since being diagnosed with VHL 13 years ago I have had 3 cerebellar haemangioblastomas (brain tumours) removed, a full Whipples procedure & my latest operation (of which I am currently at home recovering) a Laparoscopic Adrenalectomy – the removal of my left adrenal gland and its attached tumour. All tumours that I’ve had removed have been benign, which is a bonus to take away from each operation…you have to look at the positives when life throws so much for you to tackle!

Some people may read that first paragraph and wonder how people cope with this but that’s just the thing…you have to. It’s only in the last 2 years, since going through 3 operations within the space of 20 months, also the fact that I’m ‘growing up’ (not sure that I ever really will!), that I’ve started to understand the full impact VHL has not only on yourself but your family and friends too. The pain you see in their eyes when you get the results of various MRI scans, blood tests almost hu………

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Francesca Bryant

VHL Patient
Sep 8, 2019

Frankie’s Story

LIFE DOES NOT GET EASIER, YOU JUST GET STRONGER

MY VHL story by Francesca Bryant, 28

Where do I even begin?! Since being diagnosed with VHL 13 years ago I have had 3 cerebellar haemangioblastomas (brain tumours) removed, a full Whipples procedure & my latest operation (of which I am currently at home recovering) a Laparoscopic Adrenalectomy – the removal of my left adrenal gland and its attached tumour. All tumours that I’ve had removed have been benign, which is a bonus to take away from each operation…you have to look at the positives when life throws so much for you to tackle!

Some people may read that first paragraph and wonder how people cope with this but that’s just the thing…you have to. It’s only in the last 2 years, since going through 3 operations within the space of 20 months, also the fact that I’m ‘growing up’ (not sure that I ever really will!), that I’ve started to understand the full impact VHL has not only on yourself but your family and friends too. The pain you see in their eyes when you get the results of various MRI scans, blood tests almost hurts more than the physical results themselves.

I don’t have huge amounts of advice to give but below are 2 of the most important things to remember;

 

  • Don’t Be Scared

 

You might read that and laugh but it’s true. Of course it feels terrifying when you get told the news that you’ve got another operation coming up but the care you feel from the nurses at hospital really puts you at ease. Hospitals aren’t anyone’s favourite place to be, whether you’re the patient or a visitor, but they are the best place to be when you need looking after. I’ve been under the care at Addenbrookes throughout all my treatment and they are incredible – fortunately for me, the same surgeon has performed my last 2 operations which puts me much more at ease knowing I’m in safe hands.

 

  • Know That It Does Get Easier        

 

My biggest operation, both physically and mentally, was the Whipples Procedure that I underwent January 2017. I was not prepared for just how poorly I would feel afterwards, it was an extremely tough time. I don’t remember too much but I do remember the pain I was in straight after the operation and my family telling me all about how they couldn’t believe how many lines and drains I had, which stayed in for at least a couple of weeks. Since then I’ve lost a total of 2 and a half stone, this was due to it taking months for me to get my food intake back on track. I used to eat one mouthful and be full, I couldn’t see the discomfort and pain getting any better but it does. Even now, over a year down the line, I don’t feel as good as I felt before that operation, but you learn how to cope and adapt in order to make life easier for yourself. Speak to others who have been in the same situation, at the end of the day nobody knows better than someone else who has been through it too.

Yes you have days where you want to curl into a ball & cry your little heart out. But then you also have days where life has been put into perspective & you appreciate each little thing that will happen in that day – from the sun shining when you first wake up to having a lovely cuddle in front of a movie. This illness really makes you take a step back and appreciate everything you have. You understand that you don’t need to stress about the silly things, or if you’ve had a bad day at work…after all what is a ‘bad day’? I get a lot of comments from people that I have a very calming nature, but the truth is most of the time I’m probably like a swan – looking graceful above the water but if you looked underneath their legs are paddling like crazy. It’s very easy to put a smile on your face, it’s much harder to really mean that laugh but I like to think that I keep as positive as I can through everything. It’s important to surround yourself with people you love & enjoy every day. I’m a strong believer of that motto YOLO *You Only Live Once* and I live by that each day…who knows what the future holds but enjoy finding out!

Despite everything I feel incredibly lucky, I’m aware that there will be other people who aren’t as fortunate as myself, who don’t have the strong support network around them and this is why I’m putting a lot of time and effort into raising money/awareness for VHL UK/Ireland. Last year myself & my fiancé held our first charity ball that we organised with the help of family and friends. It was a huge success and we raised just under £5,000 that was split between Macmillan Cancer Support & VHL UK/Ireland. We are holding another ball on 20th October 2018 & we are aiming for this to be bigger & better. Let’s support the funding behind VHL, how amazing would it be to find a cure for this and potentially be one step closer to finding a cure for Cancer. Channel your worries and energy into creating something positive that will keep your mind busy, away from the stress that VHL can bring to everyday life.

I’d just like to take this opportunity to thank each and every person who has helped me through everything over the past 13 years. All the nurses, doctors, surgeons & Genetics team at Addenbrookes. My super supportive work colleagues, it really helps having such a strong support network there. My friends and amazing family (both immediate and the one I’m lucky enough to be marrying into next year!) Last but not least, Dean (my fiancé) who is my absolute rock. He’s a superstar, he’s been through so much himself yet he’s always there when I need someone to put the smile back on my face. I know they all know how much they mean to me and how much I love them but it’s nice to be able to put down into words….THANK YOU.

No matter what stage you are in your life, whereabouts you are in your treatment for VHL…you’ve got this and we’re all rooting for you! #VHLwarrior4lyf

“Life is like a coin. You can spend it any way you wish but you only spend it once”

 

Francesca Bryant

VHL Patient
Sep 8, 2019

Janko’s Story

“Diagnosis as a Blessing” Janko Andrijasevic, Montenegro/Croatia 

It must have been as early as 1987 that I started developing the first symptoms of VHL – hearing loss, tinnitus, and balance problems. Then ensued kidney complications and brain tumours. However, since I was misdiagnosed at the time, the VHL dots were not yet connected, and I thought of all those ailments as unrelated to each other. The doctors who treated me also never made a connection, since I live in Montenegro, a very small Balkan country where doctor………

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Janko Andrijasevic

VHL Patient
Sep 8, 2019

Janko’s Story

“Diagnosis as a Blessing” Janko Andrijasevic, Montenegro/Croatia 

It must have been as early as 1987 that I started developing the first symptoms of VHL – hearing loss, tinnitus, and balance problems. Then ensued kidney complications and brain tumours. However, since I was misdiagnosed at the time, the VHL dots were not yet connected, and I thought of all those ailments as unrelated to each other. The doctors who treated me also never made a connection, since I live in Montenegro, a very small Balkan country where doctors have no experience in dealing with VHL at all.”

“In the mid 2000’s a very unusual event took place in my life. Surfing the Internet I accidentally discovered that I had a half-sibling I had never known about. This person lives in a major city in Western Europe, and very briefly after our initial contact we decided to meet. When we started talking about our lives, medical history was an unavoidable part of our story, on both sides. We both had similar records. The only difference was that my sibling had a VHL diagnosis. The logical step ensued in 2007, after twenty years of medical challenges. I went to this foreign clinic where my sibling lives and got tested for VHL. The tests came back positive. However strange it may sound, it was a relief. I finally learned what it was that I was fighting against.
Since my official diagnosis I have become a patient at the NIH in Bethesda, USA. I have had multiple surgeries there, and I am facing many more. I am sadly discovering that VHL is placing increasing limitations on my life almost daily. Still, I have not let VHL completely disrupt my life. I am currently 46 years of age, I have a successful career of a university professor, I write and publish books, travel the world, and generally share a positive outlook on life. I love to live, and although difficult, life with VHL can be beautiful, too

 

 

 

Janko Andrijasevic

VHL Patient
Sep 8, 2019

Tasha’s Story

Tasha’s Story

My name is Tasha and I’m 26 years old. 5 years ago, I met Tj a man who would change my life. This is my experience with VHL as a partner and mother. Warning I’m a rambler so well done if you get to the end.

2012 – I met TJ and had my first experience with VHL. ‘What’s that?’ I ask about the semi-circle scar on his belly. ‘It’s my shark bite” Tj joked. Weeks go by till he reveals; I have VHL. I’ve lost 2/3 of my kidney, had a brain tumor taken out, a tumor removed from my cheek and one removed from my eye. Wow. I’m not even sure I had anything to say. As soon as he left I got on google.

 

2013 surprise pregnancy. This led to many m………

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Tasha

Partner and mother to VHL patient
Sep 8, 2019

Tasha’s Story

Tasha’s Story

My name is Tasha and I’m 26 years old. 5 years ago, I met Tj a man who would change my life. This is my experience with VHL as a partner and mother. Warning I’m a rambler so well done if you get to the end.

2012 – I met TJ and had my first experience with VHL. ‘What’s that?’ I ask about the semi-circle scar on his belly. ‘It’s my shark bite” Tj joked. Weeks go by till he reveals; I have VHL. I’ve lost 2/3 of my kidney, had a brain tumor taken out, a tumor removed from my cheek and one removed from my eye. Wow. I’m not even sure I had anything to say. As soon as he left I got on google.

 

2013 surprise pregnancy. This led to many many discussions on testing for VHL during pregnancy. We didn’t and had a beautiful baby boy in 2014. Cord bloods were taken at birth for testing. We got a phone call at 6 weeks to say that it was going to be a little longer. At 8 weeks old I got the letter, this tiny helpless baby I had in my arms had VHL. When they needed the extra time my gut knew it. I felt guilty, like I had failed already at being a mother. We went for a meeting with a genetic counselor to see what the future would hold. Tj was 18 when he was diagnosed so this was going to be new for both of us.

 

We decided that PGD was the way forward to add to our family. PGD, pre-implantation genetic diagnosis, is where the embryo is tested for a genetic condition before being transferred back to the mothers womb. To start PGD we needed a probe. After having samples sent around the country they had agreed that they were as confident as they could be they had identified the gene. A year after we started this we could start PGD. Little did I know PGD was going to be the hardest thing I had ever done; though anyone around me would argue that dealing with the hormonal mess I became was far tougher.  It wasn’t a smooth ride. First round I had moderate OHSS, ovarian hyperstimulation syndrome. It’s a side effect to the fertility drugs where basically you feel like you have been to an all you can eat buffet eaten the whole lot so your stomach feels like its going to burst, your head pounds and you feel like you are going to throw up but you are so thirty you cant stop drinking. Its ok it only lasts about a week but during this time having a two year old use you as a bouncy castle is not advised.  to then find all embryos were affected. I hadn’t even considered this and was torn up. The wait for the second round seemed to take forever but we ended up with three VHL free embryos.

The first time I have ever seen Tj scared when I told him we could soon have four littles running around the house soon. More bad luck our first transfer we miscarried. So put everything in and transferred the last two embryos together. I was convinced it had all failed again after a bleed but one week after my birthday in September 2016 I saw one little heartbeat on the screen. We were pregnant again.

 

During this time Tj had been experiencing headaches, sickness and blurred vision. He was admitted to hospital for a week; no one was sure why his brain tumor was causing problems since it hadn’t grown. It was my first realization of what VHL was really like. His scans had been stable up until now, November 2015. All that I could think about was how am I going to explain this to our little boy.

 

January 2017 after a brain scan the consultant wanted to see us. Tj tumor had grown and it needed out, Tj was put on the surgery waiting list. Tj was getting more and more tired and taking more and more paracetamol but I think he was trying to put it to the side till our baby was born. April 2017, 38 weeks pregnant and Tj was in hospital with his brain tumor again. Once again his scan showed that his tumor hadn’t grown much and they were unsure where these symptoms were coming from. After a week in hospital he was once again sent home, I was now 39 weeks pregnant and had been scared this baby wasn’t going to meet its dad. Two days later we had another baby boy. Due to the tiny 2% chance of PGD not being accurate we had cord bloods tested again. Thankfully they showed he is VHL free.

 

March 2018. We have had regular scans and everything has remained stable. Tj still manages the pain with paracetamol and is still waiting for his operation. Its hard to explain to our now four year old and he calls the tumor Terry. Around appointment and scan times I try to make it seem as normal as possible. He starts school his September and he will start to realise that he is different. I’m sure there will be lots more questions too. The hardest thing is not showing him the fear but not to give him false pretence everything will be ok.

 

We talk about VHL openly but always in a non negative way, there are no secrets in our house. As much as I want to forget it exists I can’t and when we have to face it we will together.  VHL is going to affect our family for the rest of our lives.

 

I couldn’t be prouder or luckier to have this family. VHL has taught me to live life, no regrets and to make the most of every day. If I ever feel sorry for myself I remember the strength Tj shows and suck it up. If I have half his strength I’m doing well.

 

 

Tasha

Partner and mother to VHL patient
Sep 8, 2019

Barry’s Story

“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 da………

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Barry Moloney

VHL Patient
Sep 8, 2019

Barry’s Story

“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.

 

Barry Moloney

VHL Patient
Sep 8, 2019

Georgia’s Story

VHL has made me the strong person I am today!

14 years ago I found out that I had VHL at the young age of 7. At the time it didn’t seem to bother me as I thought to myself ‘7 is too young to be affected by such a disease’. After 14 years of living with VHL, I am going to share my experience with you and try to let all the young people out there know that it isn’t as bad as we think!

VHL UK Ireland Blog Georgia McDonough Real Life Story

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Georgia McDonough

VHL Patient
Sep 8, 2019

Georgia’s Story

VHL has made me the strong person I am today!

14 years ago I found out that I had VHL at the young age of 7. At the time it didn’t seem to bother me as I thought to myself ‘7 is too young to be affected by such a disease’. After 14 years of living with VHL, I am going to share my experience with you and try to let all the young people out there know that it isn’t as bad as we think!

VHL UK Ireland Blog Georgia McDonough Real Life Story

14 years ago

Luckily for me I never had any symptoms to be diagnosed with VHL. However, my mum on the other hand was the reason I found out that I had the disease. At such a young age all I can remember is blue flashing lights outside our house with paramedics and ambulances seeing my mum week in, week out. My mum lay in a dark room with a cold towel on her forehead to try and relief the pain or her lay in the bathroom on the floor in so much pain or even holding on to the wall to take me to school in a morning! Looking back this is no life for anyone especially a 7 year old child but I never knew any different!

I remember the endless hospital visits to see my mum and being at home with my dad on our own. Little did we know that she was about to be diagnosed with a brain tumour and be given 6 months to live! Without another thought my mum opted for the operation to remove the tumour! After a long 8 hours of surgery and 3 days in ITU, the tumour was successfully removed and sent off to the lab to be tested, in which we found out that my mum was the carrier of the Von Hippel Lindau Gene.

I was tested along with my auntie and unfortunately the results came back positive in which we both had VHL. My mum’s mum sadly passed away a little while after this and was tested positive of VHL but it was unfortunately too late for her. Both my mum and dad sat me down and told me the news and all I remember was feeling numb and crying to my parents because of what I had seen my mum go through and the last thing I wanted was the same to happen to me, however at the same time I never thought that it would affect me at such a young age but I was reassured that I would be fine and I would be checked yearly for any changes. In which then the screening began. Yearly, CT scans and eye tests, the odd ultrasound and 24 hour urine samples! The bit I found the worst was having to wee in such a big bottle and not being able to eat chocolate for a whole 2 days at the weekend, what child wants to be told that!!!

7 years ago

I had been clear for a whole 7 years, completed primary school and was in my second to last year of secondary school. I found that school was my distraction and I got stuck in with all my work to hide away from all the VHL problems!

In September, I started with terrible headaches and high blood pressure which only seemed to get worse as the weeks went on! In November, I was quickly admitted into hospital for an emergency ultrasound, in which a pheochromocytoma was found in my left adrenal gland the size of a golf ball! To be told this news at the age of 14 was horrible and the fact I was in the middle of my GCSE’s was even worse. My mum was distraught and blamed herself for passing the faulty gene onto me and for me to have to go through this at my age but it didn’t bother me. The ball was rolling quicker than I thought it would and by the end of January I had the date for my operation; 8th February 2012. After 3 days in ITU and a further 4 days on a ward, I was discharged from hospital! I was told it would be 50/50 chance whether I was going to have another pheochromocytoma in my other adrenal gland but it was very unlikely due to my age! I went back to school after 2 weeks and carried on with everything just as normal. Having my operation made me so much more determined to live life to the full and I appreciated life a lot more!! I completed my GCSE’s and had amazing grades to say I was in hospital a lot of the time and I decided to carry on and complete my A-Levels.

5 years ago

I had been clear for 2 years with my yearly check-ups in place to make sure everything was fine.

Until one day the headaches came back, exactly like they were before, not a headache when you’re tired or it’s too warm or a normal headache but a headache that I remember experiencing 2 years ago for a long time!

After finally getting to have an MIBG scan and see my previous surgeon, my thoughts were confirmed and I was told that I was the unlikely one and the pheo had come back on the opposite side! Again this was happening at such a rubbish time, right in the middle of my A-Level exams! It was just like déjà vu with everything happening all over again, exactly the same, however this time I had multiple appointments with my endocrinologist to discuss the impact of having both my adrenal glands removed on my life. This would mean that I would be on steroids for the rest of my life, which would change my life drastically.

I had my operation a week after my 18th birthday (no chance was I missing out on the alcoholic drinks!!!!) and I recovered considerably quicker than my previous operation luckily just in time to celebrate Christmas with my family. I quickly adapted to the tablets and I knew exactly what I was doing with my pill pots and alarms as reminders to make sure I was taking my tablets at the right time of day! However, who was to know that getting a sickness and diarrhoea bug could be so concerning, having to take a ride in an ambulance to hospital (something ticked off the bucket list!) and staying the night, hooked up to a drip seemed so weird for something so trivial but I had gathered that this was in fact my life now and things were more over exaggerated than usual!

However, this did not stop me enjoying my life at all, 2 months after my operation I jetted off to America with my boyfriend and his family for 3 weeks exploring places I never thought I would see; Las Vegas, Hollywood, Arizona and places in between! I then went to Marrakech with my mum in the August and Amsterdam in the October. I thought life was too short and I wanted to enjoy life to the full!

5 years later

Luckily, my health has been quite stable for the past 5 years, I have been told I have a hemangioblastoma and a tumour in my kidney which is monitored every 6 months due to it increasing in size. I left sixth form and decided to take on an apprenticeship completing both my Level 2 and 3 in Business Admin and I have worked my way up in the business that I now work for. I enjoy every day to the max because I find this better and much easier to cope with VHL than being depressed each day! Don’t get me wrong I have my bad days but who doesn’t!!

VHL has changed my life a lot due to the steroids I take daily I have had to adapt my life around this but it will never stop me doing anything that I want to do or what I can put my mind to! Being diagnosed with VHL has changed me as a person, I am so much stronger than I ever was before and handle things a lot better because you never know what is around the corner or what will happen next!

Like everyone I suffer from stress, mostly when I’m due for my screening but I also feel blessed to have these screenings so that it puts my mind at rest and for me to know what is happening very early on. I wanted to share my story (which I hope is not too negative) to show that you are not alone and even though we have this disease it doesn’t stop you from doing anything you want to do. And for all the young people out there that are diagnosed with VHL, talk to people it makes things so much easier to cope with and you will gain so many friends from this. Also, do not be afraid to ask questions to anyone and trust your body, you know your own body better than any doctor or scan so if something doesn’t seem right do not keep quiet!!!

Even though having VHL is horrible for everyone, I can honestly say that it has brought me some amazing friends who I am so grateful that I have met and spent so many memories with these people outside of the doom and gloom of VHL and being happy and enjoying life together!

My biggest blessing is having support from my family, friends and boyfriend and for having the strength and thankfulness for life in general to appreciate everything I have and my body being healthy between those scans each year.

I hope my story has helped people find comfort and made the younger people feel better with living with VHL so young and to spread awareness of VHL disease.

Georgia x

Georgia McDonough

VHL Patient
Sep 8, 2019

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