LIFE DOES NOT GET EASIER, YOU JUST GET STRONGER
MY VHL story by Francesca Goddard, 35
Where do I even begin?! Since being diagnosed with VHL 20 years ago I have had 4 cerebellar haemangioblastomas (brain tumours) removed, a full Whipples procedure, a Laparoscopic Adrenalectomy (the removal of my left adrenal gland and its attached tumour) & an endoscopy procedure to increase my bile duct after recurring pancreatitis due to the Whipples. 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!
A huge decision Dean (my husband) & I had to make was about starting a family together. We were fortunate that we were fully funded to proceed with Pre-Genetic Diagnosis at Guy’s Hospital in London. Wow what a rollercoaster IVF is! We went from having 17 eggs collected to only 1 embryo in the space of a week. I am so delighted & feeling grateful every day to say our one embryo didn’t have VHL, we had a beautiful baby boy Matthew in March 2022. What a joy a baby brings but unfortunately pregnancy wasn’t plain sailing for me & I was in 5 weeks after having Matthew to have my 4th brain tumour removed.
Some people may read those first paragraphs and wonder how people cope with this but that’s just the thing…you have to. When I was coming up to my 30s I ended up having 3 operations within the space of 20 months, that was hard & it made me start 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
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. 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 20 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. Last but not least, Dean 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 Goddard
VHL Patient. May 11, 2024
