Julie described her diagnosis of stage 3 small cell lung cancer like being kidnapped and then put in a horror movie. However, after chemotherapy, radiotherapy and now a clinical trial, she is determined to not let everything be about her diagnosis.
“I was terrified by my lung cancer diagnosis. I have stage 3 small cell lung cancer so it’s quite a late stage diagnosis. I didn’t know that much about lung cancer and all I seemed to be getting was bad news after bad news after bad news. I remember wondering how anybody ever came to terms with something like this and managed to get back to any kind of normality.
“Then I discovered my lung cancer support group…
“To say I was hesitant about attending a group is an understatement! I was really scared because I had no idea what to expect. Actually that’s not true. I expected to see a lot of poorly older people, a lot of old men on oxygen. However, the reality was pretty much the exact opposite!
“I first joined on Zoom as it was during the pandemic and there, staring back of me, was a group of feisty women like me. None of us ‘looked’ like we had lung cancer. In fact, if you asked anyone from the outside looking in, you would never say lung cancer was the common denominator between us! That was the first time I thought my diagnosis wasn’t necessarily the instant death sentence I perceived it to be.
“I then soon started my treatment. This was another positive step forward as it gave me something to focus on. I was having concurrent chemo and radiotherapy. I’m not going to lie; it was quite gruelling and brutal.
“My hair started to fall out which was devastating. In an attempt to take back control, I asked a friend to shave it off. I really struggled with this. I hated looking at myself in the mirror because it was a cancer patient staring back at me.
“But I got through it and at the end of the 12 sessions my scans showed no evidence of disease. I then had a choice to make – go on a watch and wait resume or I could join a clinical trial for a new immunotherapy treatment.
“I discussed it with my consultant and decided to go for the trial. For me, I felt better in the knowledge I was still (hopefully) treating my cancer but the other driver was to help people in the future.
By being part of this trial could improve the treatment options and outcomes for people down the line. Someone had once done this for the treatment I benefitted from so I wanted to do the same. It’s about giving back.
“I’ve been on the clinical trial for about a year and a half now. I have a blood test, see the doctor and and then have the infusion. I obviously don’t know if I’m on the placebo or if it’s the immunotherapy. Even the doctor doesn’t know. I think I’ve got about another seven months to go and then it will be unblinded.
“It can make you a bit anxious but I’m happy with my decision to be part of the trial, especially if it gives me, and others, another treatment options. There isn’t as many types of treatment for small cell lung cancer as there is for non-small cell lung cancer. If it turns out I was on the immunotherapy, I believe I can stay on it for another two years providing my cancer doesn’t progress and I don’t get any severe side effects.
“Either way, my initial treatment and this trial has given me my life back. I try not to harp on about it. Yes, I’ve got lung cancer but that’s not everything in my life.
“I’ve just moved into a nice little flat. I go on holidays and days outs. I quite like going on the holiday or little mini breaks on my own. It gives me the chance to go somewhere where people don’t know that I’ve got lung cancer and they just treat me like everybody else.
“And I’ve got my tribe and we have such a laugh. We go out for meals and things, and just try and have a great time. Together, we are all living with lung cancer.”