I was officially diagnosed when I was 30 years old. I was never symptomatic and apart from an epilepsy diagnosis as a teenager, I was considered a healthy young woman. The lesion in my lung was actually found 4 years earlier at the top of a head and neck x-ray. Again, I was asymptomatic. I had fallen down some stairs and badly hit my head, hence the X-ray. The lesion was noticed and I subsequently was referred to a respiratory consultant who I met just once. He referred to the lesion as a cyst that would disappear. Because what healthy young, female non smoker could not possibly have cancer right?
4 years later I had graduated from nursing school, had a great work/ life balance and and been in a long term relationship where a long term future was being discussed. We had discussed a house, a family etc. So, under the supervision of my neurologist, I started the process of reducing one of my epilepsy meds. My epilepsy had been stable for years. I had to stop this drug as it has the potential to be very harmful to an unborn baby. When I stay harmful I mean 40%- 50% change for physical and cognitive disability. My plan was to wean off it slowly and replace it with another anti seizure drug that would keep any pregnancy safe and me seizure free. This process opened a window where there was an increased risk of seizure activity until I became stable on the new drug, a process of months.
The seizures returned and I ended up pretty banged up a lot of the time. The worst one was on Jan 31st 2018 where I hit the pavement facedown smashed bones in my face and knocked out my 2 front teeth. Only 1 tooth was recovered as I was rushed to hospital. The Drs were worried I had swallowed or inhaled the other tooth so sent me for a chest CT. The tooth was not found but a large lesion on my upper right lung was found in all its glory. I told the Drs that the same lesion had been found 4 years ago, that I had met with a consultant who reassured me it was nothing so I went about my studies at the time. The Drs looked back in my records and found the notes and X-ray from 4 years ago and didn’t know what to say to me.
At this stage, smashed in face and all, I was referred back to the respiratory team for investigations. I spent the month of February having all the scans, biopsies and consultations you can think of. Because of my own medical training, I knew what they were looking for and knew they were also terrified of a lawsuit as I was asking questions about the lack robust follow-up 4 years prior. I was diagnosed 8th March 2018 at the age of 30 even though it had been there when I was 26. The lesion had since grown. Very quickly I was referred for surgery where I had my upper right lobe removed. I had post op complications so spent some time in ICU. I had only a few weeks to push my physical recovery before they wanted to start chemo. I insisted on delaying my chemo so I could have my eggs harvested. I started intravenous chemo mid June 2018 and finished September 2018.
By January 2019 I was back working full time as a paediatric nurse, going on my 4th year since graduation. On 1st June 2019 I found out I had relapsed and now had stage IV adenocarcinoma of the lunch, in particular, I was ROS1+. To my shock I found out we make up 1%-2% of the GLOBAL population, that to oncologists, we are like unicorns. My oncologist said he was out of his depth and he felt it was in my best interest to transfer my care to a specialist who was based at a different hospital, one he knew and the only hospital near where I live that has the license to dispense my oral chemotherapy, Crizotinib, which I’ve been on since September of 2019.
I have to have monthly blood test followed by a consultation, my chemo is dispensed monthly based on the blood results and I have to have 3 monthly head MRIs and chest/abdominal CTs. I’m lucky in that the hospital is within walking distance of my house. After starting Crizotinib my body very quickly told me that working a minimum of 37.5 hrs a week was not going to work so I dropped my hours to 30. I struggled but here I was alone and I still had to live right??
Over the years, some side effects have gotten stronger. I have discussed them on a number of occasions with specialist oncologists and oncology nurse specialists. They call in ‘chemo brain’. They were not surprised after years on chemo etc. I’ve since had to reduce my hours further to 22.5 hours a week. That’s 3 eight hour shifts and no nights. Big ask for a nurse who got paid badly in the first place! I also work in the paediatric haematology and oncology department so the sick irony isn’t lost on me. I may take oral chemo but sometimes the side effects are just as bad. I’ve had 2 DVTs in 2 years and am now on lifelong blood thinners. I get sick regularly which working in a hospital doesn’t help. I’ve lost count of the number of chest infections I’ve had, I’ve had COVID 5 times and freezing cold air causes the equivalence of an asthma attack only I have no inhaler. This really sucks when you live in the North West of England!
I wouldn’t wish this on my worst enemy. The struggle is real guys! Physically, emotionally, mentally, financially, legally and all the crap that falls between. I did so much of it alone and buried so much of it thinking I was managing it. So much so that my body has recently given me a rude awakening into the fact that I’m not completely ok. Stifling years of grief and pain because of the cancer, stresses from work and other sources, uncontrolled epilepsy and god know’s what else has literally made me sick. Sick in terms of crippling migraines, crippling anxiety and fear, worsening epilepsy, inability to properly sleep or properly work. Please, don’t do what I did and stifle all your thoughts and feelings. Sometimes we have to experience all the good and the terror and once to come out the other side. I’m paying for my mistakes in thinking I had a handle on it and I could do it alone. Truth is, I feel very vulnerable a lot of the time, very emotionally fragile, almost like a china doll. I feel fear, anxiety and tremendous loss. I feel broken. Truth is, I need to feel safe and for that I need my village. We all deserve a village! I am only now accepting that I have a lot to work through, that I need coping mechanisms so my body can stop making itself sicker. That’s the power of the mind and stress etc. It literally can manifest itself as an illness with really symptoms and real consequences.
All in all, under the circumstances, that fall in a way saved my life. What kills me the most being so young at diagnosis, is not having children. It breaks my heart every day if I’m honest. I have a wonderful husband who is loving and supportive and we are trying to navigate our way on a surrogacy journey in a country with very draconian laws about surrogacy.
I hope my story helps shine a much needed light on our community and gives anyone at any age the will to never give up!!! I know I won’t!!
