Adam, Lung Cancer
When were you diagnosed and what with?
I was diagnosed in March 2016 with Stage IV lung cancer, with spine mets.
How did you find out you had cancer?
I was in hospital with some breathing difficulties which turned out to be a viral infection to the larynx resulting in a narrowing of the wind pipe. During a standard X-ray to my throat, a shadow was spotted on the outer reaches on my lung, which had just so happened to be picked up by the X-ray. The ear, nose and throat (ENT) team forwarded this to the respiratory team to take a closer look. They were confident that it would be nothing, considering my age, lifestyle (lifelong non-smoker) and level of fitness. However, they had to rule out cancer, so they sent me for a full body MRI scan. This came back showing to ‘weaknesses’ on my spine. Again, it was stressed that this could be a result of years of cycling and a history of back pain due to sporting activity. However, it was also explained to me that it was possible it was connected to the shadow on the lung and could be cancerous. I was sent for bone and PET scans as well as a biopsy on the lung. They were basically trying to give me the benefit of the doubt and wanted to find something to say “no, this is not cancer”. Unfortunately all avenues came back positive and I found myself diagnosed with Stage IV, incurable, non-small cell lung cancer at the age of 37, without having a single symptom.
What did you think and feel when you were diagnosed?
I was numb. It was like it wasn’t happening to me. I was calm, I was practical but I was numb.
How did the people around you react?
I was with my wife throughout the process. She was a lot more shocked and emotional than me, but again, practical. Telling my family was the toughest. I broke down in front of my parents and told my mum I was just so scared. I hugged her and didn’t let go (and we are not a huggy family!!!)
What treatment have you had?
It all moved very quickly. It transpired I had a mutated DNA which triggered the cancer cells into life, so this meant I was able to have biological, targeted, oral chemo. I was advised that if I my body responded well to a daily tablet called Afatinib then the average life span was 18 months. However, as it’s a relatively new drug there isn’t a lot of research and some people have been on it for 5yrs. I thought to myself “that’ll do me, I’ll be on this for 5yrs, then those on it for 5yrs would then have been on it for 10yrs...” and so on.
However, pretty much bang on 18 months my scan showed signs of growth and movement. Bang on the average.
I had a liver biopsy that showed that my cancer had changed forms from non-small cell, to small cell. This is an extremely rare occurrence and my oncologist had only seen one other case in all her years of work. So, my treatment planned changed immediately. I switched from the tablets to the more standard IV chemo: 6 cycles, every 3 weeks, over 18 weeks. I’ve just finished.
But it doesn’t stop there. After my second cycle I went for an MRI scan to see how I was responding. The newly active areas, lymph nodes and liver were responding well, but the original tumour on the lung and spots on the spine were not responding. They weren’t growing either, so there were no immediate concerns, but my oncologist believes that if they continue to remain unresponsive then it would mean my original cancer has remained non-small cell, while the new cancer is small cell. Even rarer!!What this could mean is that I return to Afatinib after these cycles are complete and then they may irradiate the small cell stuff. Mind f**k, right?!
How did you feel through treatment?
Rough! The daily tablet had me running at about 40% energy levels on a good day. I then had to adapt to being off the tablets and having energy back, yet being faced with the intense IV chemo, leaving me worse on the bad days and better on the good days. It is tough physically and mentally.
How did you get involved with Shine?
I attended an information day in Brighton that introduced me to Shine and to Emma and Ceinwen. I instantly connected with them and felt I would find comfort and understanding through Shine.
What difference has Shine made to you?
I’ve said this many times but it is no less true or important: connecting with Shine and attending their Great Escape is the most single important and best decision I have made in the new life I now find myself in with cancer.
Shine has enabled me to find new friends within cancer. Shine has enabled me to feel supported and loved within cancer. Shine has enabled me to no longer feel lonely within cancer. Shine has improved my life, while going through the hardest, darkest times imaginable. Shine has enabled me to enjoy life, hold my head high, smile, face everything head on, within cancer.
How do you feel about your experiences? What‘s been the biggest change you’ve faced?
There have been many changes I haven’t worked since I was hospitalised with the breathing problems and ultimately my diagnosis. This includes going working full-time since leaving college to not working a day for two years. I had been with my wife for 13 years, and we have a daughter who had just turned 2 at the time of diagnosis. Fifteen months in, and we separated. No one can prepare you for that. Shine are a constant support for a challenges I have faced and are a comfort to me at my hardest times.
If you could give one piece of advice to yourself before your what would it be?
My one piece of advice would be kind to myself at all times. This won’t be easy and there will be good days along the way, but be kind to yourself. The hardest thing is seeing what my diagnosis is putting my closest friends and families through, and the pain and worry my cancer is causing them. But, if this were happening to any one of them I would do anything to take it for them. They may feel the same and wish they could spare me from all of this, but if it had to happen to any of us, then I wouldn’t change it. I just need to remember to be kind to myself.