Can you share a little about Vicky’s story and her path so far?
Vicky was diagnosed with stage 4 lung cancer in July 2017 at the age of 30. It took approximately 18 months for her to be diagnosed. She had persistent cough and breathlessness that antibiotics and inhalers did nothing for. She also had hip pain and weight loss. Vicky is a Personal Trainer and had run half and full marathons with great times. Slowly over the 18 months, Vicky was struggling to maintain these times. She had a bad feeling something was seriously wrong. But because of her young age and the fact that she was still running, nobody listened.
Eventually, a lump on her clavicle was removed for biopsy and we received the shocking news that she had cancer. At first, we all expected it to be breast cancer or maybe lymphoma, but a few days after a CT, we were given the grim news that it was in fact lung cancer.
Approximately 10 days later, she began a course of Cisplatin and Pemetrexed as her biopsy had come back negative for any targetable mutations and she had low PD-L1.
Because of her age, they were hoping that she would tolerate six rounds of chemo.
The day before her second round of chemo, she visited Oncology for blood work and was told that they would be stopping her chemo. Unbeknownst to her, her medical team had sent biopsy samples for biomarker testing and Vicky had tested positive for ALK. Soon after that, she started Crizotinib. Another four weeks passed and something even more amazing happened. Her oncologist had applied for her to receive the second-generation drug Alectinib under the “Early Access To Medicine” scheme. Roche agreed to fund it until it became available on the NHS. So they switched her treatment to Alectinib.
“She had a bad feeling something was seriously wrong. But because of her young age and the fact that she was still running, nobody listened. ”
Vicky has been on this incredible drug for two years now. Her tumors have all but disappeared apart from the primary. The cough and hip pain have resolved too. She continues to run her successful Personal Training business and has since competed in many races including five half marathons. Life is Good!
As a Mom of such a young woman, this had to be incredibly hard to hear. What were your first thoughts/emotions and how did they evolve as her and your journey has unfolded?
After Vicky received her diagnosis, the Consultant offered to break the news to me and her step father. On receiving news that no parent should ever hear, I only really remember waking up in another room with monitors attached to me. The shock caused me to pass out for the first time in my life! We all left without any proper information apart from what he had told Vicky. There was no cure but it could be treated.
Over the following months, my focus was Vicky. I researched, researched, researched. I hardly ate, lost a lot of weight, and I attempted to wrap Vicky in cotton wool. Everything became about Vicky, to the detriment of everything and everyone.
I never once saw Vicky cry. I know she had plenty of dark days, but she remained strong and focused from the outset. An example of this was when we left the hospital after her diagnosis. We were all quiet and gloomy. She wasn’t having any of it. She glared at us and said, ‘Hey everyone, I am still here.’
A few days after her diagnosis, she released her first blog. She needed to share her story with the world and spread the word that if you have lungs you can get lung cancer. Within hours it went viral, and before she knew it, she was giving interviews to newspapers, radio, and TV globally. Her strength gave me strength.
Over two years down the road, I am in a far stronger emotional place. I still have days where I worry, but these days are getting less and less. I am grateful and hopeful. I have a strong healthy daughter, I am in awe of the amazing scientists and Doctors who have given Vicky back to us, and I’m excited about all the continued research.
What is something you wish someone had shared with you early on as a supporter of a loved one with a diagnosis like this?
There are a few things I would try to do differently as a mother of a young adult diagnosed with this disease.
I would refrain from Googling anything, at least until you have a complete diagnosis of the type of lung cancer. There are so many types with so many different treatments that it is pointless.
Also, much of the information is years out of date and new treatments are coming out constantly.
I would try and refrain from treating your child differently after diagnosis. Vicky has been fortunate enough to keep working and training throughout, yet I would constantly check up on what she’d eaten, whether she’d taken her tablets, asking, “should she be doing this? Should she be doing that?”
We’ve always been extremely close and speak most days, but now our conversations were different. Vicky took me for a walk and helped me understand that she needed as much normality as possible. I’ve mostly taken this on board, but I’m sure there are still moments where I drive her a little crazy.
For all of us, both survivors and supporters, this is sometimes really emotionally tough. Can you give us any tips or guidance on how you, Vicky, and your family remain so positive and hopeful?
I think the thing to remember is that not every day will be a day filled with positivity. There are, undoubtedly, still days when I feel angry or sad, but these feelings are totally normal and I know they will soon pass.
For a long time I would bottle my emotions up because I felt that, as a Mum, I had to be strong. After all, I wasn’t the one with the illness. I also believed that, after a while, people would be sick of hearing the same old things, and also, how on earth could anybody possibly understand how I was feeling.
“I think the thing to remember is that not every day will be a day filled with positivity. There are, undoubtedly, still days when I feel angry or sad, but these feelings are totally normal and I know they will soon pass.”
I was just working on autopilot and probably on the verge of some kind of meltdown.
Two years down the line, I realize that so many family members and friends were there to listen and look after me too. “Don’t be an Island” is the best bit of advice I can give.
As I mentioned earlier, I remain positive because Vicky exudes positivity and is a picture of health. Research is moving at a dramatic pace and I truly believe that, within a few years, ALK + lung cancer will be either a curable or chronic disease.
Vicky’s blog can be found here: https://www.facebook.com/vickystrongerthancancer/
