In 12 months, Jen Weller’s life of fitness was flipped on its head when she was diagnosed with stage 4 ALK positive lung cancer – a shock diagnosis for the personal trainer who had never smoked and doesn’t drink alcohol.
“My lung cancer journey started in November 2019, I had a niggly cough that only bothered me when I was laying down or if I really exerted myself playing sports.
I regularly exercised, I played rugby for my local team, and I run a personal training business, but still, I didn’t think anything of the cough. Then when the Covid pandemic broke out, I assumed I had Covid due to my cough and how it lingered.
However, things took a turn for the worse in summer 2020 when I started to experience a lot of headaches and vomiting when I stood up. I thought it might be vertigo but a few weeks later I noticed swelling on my neck, which is when I finally went to my GP.
After the consultation, my GP referred me to an ENT (ears, nose and throat) specialist. It took a few weeks to get an appointment, but things at home progressed quickly before I managed to get there.”
Getting diagnosed
“It was August Bank Holiday Monday; I was home alone when I suddenly felt really sick. I ended up feeling really dizzy on the stairs, and finally I stumbled to the kitchen when the second wave of sickness hit me.
When my husband came home from work, he found me on the floor after a suspected seizure. After calling 111, we were advised to go to A&E who did a number of tests, including a scan that revealed something that shouldn’t be there.
I was transferred to another hospital and spent the next few days having multiple scans and biopsies on my neck. The doctors discovered a primary tumour in my left lung, five metastases in my brain, lymph nodes in my chest and neck, plus another lesion in my pelvis.
I got my ALK Positive diagnosis on the 16th of September 2020.”
Treatment begins
“My first treatment followed shortly after my diagnosis; it was craniotomy surgery to remove the biggest brain tumour. Two weeks after my first treatment I had five cyberknife treatments in the remaining brain metastases.”
I immediately felt better than I had in months following the first course of treatment and following the second surgery my three-monthly brain MRI’s have been stable – and I’m so thankful for that.
“During that period, I had to take large doses of steroids which I struggled with before I started my targeted therapy in October 2020. I now take Alectinib and the side effects are hard to endure.
Since taking the drug I’ve gained 17.5kgs in body fat. I also feel a considerable amount of muscle and joint pain – everywhere from my feet to my shoulders. My once high energy levels are gone and I suffer with fatigue, nearly every day I have to take a nap. I’ve also developed a sensitivity to the sun. I used to love being in the sun but now I burn in seconds, even with factor 50.
Despite all the side effects, I am grateful for the drug to be keeping me alive.
In July, my CT scan showed progression in the lymph nodes in my chest, and I’ve started radiotherapy treatments to bring those under control so I can stay on the Alectinib.”
Living with lung cancer
“Living with lung cancer for me means a completely different life. I can’t really work the same way as I used to. I’ve gone from running 5k every morning to struggling to jog 50m.
I suffer from widespread pain and overwhelming fatigue with my athletic body quickly disappearing with the drugs. Due to the seizures, I also lost my driving license but it’s looking promising that I can get that back if my MRI’s stay stable.”
Despite everything, it has meant that I’ve learned to appreciate what I do have – an amazing support network of family and friends, and a great team at work who have helped keep the business running.
“Of course, my lung cancer came as a surprise. I was fit and healthy, never smoked or drank alcohol. At first, I had a positive mindset of ‘beating it’ and it took a while before I realised, I can’t be cured.
That brought a mix of emotions but I’m hugely grateful for the amazing treatment that I have received so far and full of gratitude for the life I am still living.
I’m here and although life looks different, I am alive.”
