On the surface, Nuzhat’s story feels brutal. Delays in her diagnosis pushed her from early-stage lung cancer to late-stage disease. That shift shattered any hope of curative treatment and forced her into tough rounds of treatment and clinical trials.
But there is more to her story. Beneath the fear and dark moments, there is hope. That is the message Nuzhat wants people to remember.
“My lung cancer journey began in October 2021. Looking back, I now believe my symptoms may have started as early as December 2019.”
“I had been experiencing frequent chest infections. I also finally recognised that I was getting out of breath when doing my normal exercise routines. This wasn’t apparent initially though; because of Covid restrictions and lockdown when I wasn’t as active as I usually was. It was only when we started to get out and about again that I noticed I was getting unusually short of breath.
“Alongside all this, doctors also investigated high calcium levels, possible parathyroid issues, Raynaud’s disease and menopause. I went back and forth to my GP many times. During this period, I had three chest x-rays but never a CT scan.
Each x-ray came after a course of antibiotics. When the third x-ray came back and the antibiotics stopped, I assumed the infection had cleared. No one suggested a CT scan, and without any understanding of lung cancer, I didn’t know I should ask.”
After my diagnosis, one of my consultants reviewed the x-rays and said he thought he could see the tumour, although he knew what he was looking for. Either way, a CT at the time would have confirmed it.
“I was eventually sent for a CT in October 2021 as my symptoms persisted. I never once thought it could be lung cancer because I have never smoked. However, being of Asian heritage, I started to wonder about TB since this is not unknown in my community.
Time is of the essence
“The first mention of cancer came during a phone call from my GP. I later learned they still didn’t have the full picture. I was scheduled for a bronchoscopy, but it got pushed back three times because of machine failures and staff shortages.”
“When I finally had the bronchoscopy, the results came back clear. A week later, I learned they had missed the right area for a proper biopsy and needed to repeat the procedure.”
In total it took five months to confirm my lung cancer diagnosis in which time it had developed from stage 1 to stage 3. The original plan was for me to have surgery. However, Covid backlogs saw my cancer advance to stage 4 and so surgery was no longer an option.
“I was of course so angry and even considered taking action over my delayed diagnosis, but this was absorbing all my energy, and I knew I needed that energy to fight this cancer. Instead, I focused this emotion into researching the best treatment options for my condition – non-small cell lung cancer with KRAS G12A and CDKN2A mutation.
The ups and downs of clinical trials
“I was offered a place on the SARON trial which combined two types of radiotherapy with two types of chemotherapy, plus immunotherapy.
“It was a gruelling marathon of treatment and unfortunately, I reacted very badly to it. I ended up in A&E on several occasions. In October 2022, I was told the treatment hadn’t worked and was to be stopped.
“I was then given two options: standard treatment or another trial. My consultant found the COSTAR lung trial. However, this was not immediately available because I had had radiotherapy. If I was to enter the trial, I would have to wait six months post radiotherapy – and have no active treatment in that time.
“I spoke to consultant at length, and we made a plan to manage the risk of waiting. We agreed I would have a scan every six weeks and if there was any significant activity, I would start on the standard treatment. Fortunately, the scans revealed very, very slow advancements so I waited.
“Three months in, the pain hit hard. Scans showed large clots in my lungs. I needed blood-thinner injections twice a day, which brought more side effects. I’ve since switched to tablets.
“After all that, I finally joined the COSTAR trial in March 2023. My tumours are stable, and the treatment suits me much better. The early side effects were manageable, and I’ve returned to something close to normal life. I still have unexplained muscle pain, and doctors are looking into it.”
Learn. Love. Live.
“Being a trained artist with a keen interest in colour and clothes, I determined to try and brighten my treatment days by wearing bright and bold block colours rather than hide away, I faced each treatment with a new colour and theme, this both gave me something different to think about but also lifted the spirits of the nurses and doctors as well as other people around me.
“In between major treatments I have been able to participate in a more limited way in open air concerts and sing from time to time as music is another passion which has been a great therapy.
The last few years have been awful. There is no sugar coating that and I’m sure people will be horrified by my experience. I expect my anger may return at some point but for now, it wasn’t constructive.
“I have been lucky to have the support of my siblings and extended family and friends many of whom have travelled very great distances to support me through my journey. Indeed, I believe that everyone with whom I have had contact has in their own way contributed to my healing, not just the nurses and doctors but the receptionist’s, the cleaners, the lady’s delivering snacks & food and even the taxi drivers have all helped me on my way through their love care and compassion.
“I look for hope in everything and that’s what I want people to take away from my story. I want people to learn, love and live.
“Learn: Gain the knowledge about your illness and accept at times you’re not always functional.
“Love: Accept and give love. Cry and laugh whenever its needed.
“Live: Have big hope and live in the moment. Enjoy life when you can and the things you always wanted to do. “For me, this has been regaining my love of art and to write and illustrate a children’s book which I hope can be published one day.”