1st November 2023

Nuzhat’s lung cancer story

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On the surface, Nuzhat’s lung cancer story is nothing short of horrifying. Significant delays to her diagnosis saw her move from early-stage to a late-stage disease, dashing all hopes of curative treatment and left her to endure a gruelling treatments and subsequent clinical trials.

However, beneath all the despair and dark times, there is hope and this is what Nuzhat wants people to take away from her experience.

“My lung cancer diagnosis began back in October 2021. However, with hindsight, I think my symptoms may actually go back to 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.

“While all this was going on, I was also under investigation for high calcium levels which were believed to be caused by parathyroid hormone, as well as Raynaud’s disease and menopause, so I visited my GP on multiple occasions. During the later end of this time, I was sent for three x-rays, but never a CT scan.

“The x-rays were separated by courses of antibiotics. After the third x-ray, the antibiotics stopped so I presumed everything was clear and the assumed chest infection had gone. A CT was never considered and because I had no prior knowledge of lung cancer, I never knew to 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-time cancer was mentioned was when my GP called and told me. I later learned that the true extent of my diagnosis hadn’t been confirmed yet. I was sent for a bronchoscopy, but this was delayed three times due to machine failure and staff shortages.

“When I eventually had the bronchoscopy, the results were all clear. A week later, they found they had failed to reach the right place for a good biopsy and needed to try again.

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.

“However, three months in and I started to get severe pains. Scans revealed significant blood clots in my lungs. I had to have blood thinner injections twice a day which came with its own challenges in side effects and have now been replaced with tablets.

“After all this, I was finally accepted onto the COSTAR trial in March 2023, and I am happy to say my tumours remain stable. I am also tolerating this treatment much better. The initial side effects were much more manageable, and I have now been able to resume something closer to normal life. Although I continue to have various unexplained muscle pains which are still being investigated.

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.”

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