A man’s battle against head and neck cancer

Hi! I am Nozar Bahadur Jokhi, 47 years old, a cancer warrior of metastatic head and neck squamous cell carcinoma.

I am a husband, a father to a 13 year old boy. I am also a son, a brother, an uncle and a friend to many. I felt healthy despite being diagnosed with diabetes and hypertension in 2019. Like many, I was busy trying not to get COVID but cancer had sneaked in.

I ask for a piece of your time to read about my on going battle and any financial assistance.

I am an expat based in Malaysia, married to my lovely wife from Philipines and a handsome son, Sometime around March 2021 I started feeling pain in my lower left jaw. Saw a dentist and was prescribed to take antibiotics plus a referral to an oro-maxillofacial surgeon. After our first consult, I had a thorough blood test, CT scan and biopsy.

On 2 April 2021, I met with the surgeon for the results, and I was then diagnosed to have a malignant tumor on my left jaw, squamous cell carcinoma. At that time the CT scan showed that it was on my jaw only and has not gone elsewhere.

I had my FIRST surgery on 17 April 2021. A portion of the damaged jaw was replaced with a metal plate. All my teeth up and down (on left) were removed in preparation for the radiotherapy. Flap and muscle were taken from my left chest to use for my jaw. I was fed through the feeding tube. I was discharged on 2 May 2021.

On 19 April 2021, the histopathology report showed that its free of malignancy.

After surgery, I regularly met my surgeon (every week initially then became every two weeks). It was on 15 May 2021, I first met an oncologist.

I started radiotherapy last June 2021 and completed my radiotherapy on 6 August 2021. The side effects showed after the 10th session. It was harder to open my mouth and I was in constant pain. I drank milk most of the time for my nutrition. Prior to cancer I weighed 91 kgs. Today, I am at 64 kgs.

Then, there was a noticeable swelling in my neck, left side. It was close to the jaw that was operated. I underwent incision and drainage.

Result was available on 7 September 2021 it was again cancer. :(

Had a PET scan and by 14 September 2021, results showed it has spread in the nearby area of the jaw and surgery was necessary again.

I was referred to ENT surgeon on the same day. He checked the swelling area and did an endoscopy to check if my air passage is clear, etc. He told us that he will need to study my case and to discuss this with his colleagues whether it is operable or not. But he already told me that if ever the surgery is not an option, he said that I might have three months to live. :(

On 18 September 2021, we, me and my wife met with ENT surgeon to find out my fate. He was very happy to inform me that it is operable and that there will be a team who will be working with him to achieve the goals 1.) clear as many cancer cells as they can 2.) save my functionality 3.) physical appearance.

On 25 September 2021, I was admitted and had another CT scan.

On 26 September 2021, the doctors and I had a video call with my wife to discuss the plan for 27 September 2021 and details of the CT scan. It was during the meeting we were informed that my larynx is affected, therefore I won't be able to talk. Half of my tongue is also affected, and I will not be breathing from my nose. A hole will be made under my chin. The scan also showed artery might be affected. But they were clear that they will know more only during the operation.

On 27 September 2021 my SECOND surgery happened as scheduled. It lasted for 26 hours, and I was in ICU for two and a half days (28 September till half day of 30 September). I was then transferred to the ward on the afternoon of 30 September 2021.

Unfortunately, on 5 October 2021, they found a blockage on the flap on my lips. The doctor needed to do emergency surgery (THIRD). After surgery, I was again in ICU for one and half day (6 October till half day of 7 October).

On 13 October 2021, I had to be wheeled again to operating theater (FOURTH) because there was leakage found.

I am now feeding through a tube, breathing from my neck and unable to speak since my operation last 27 September 2021. I was discharged on 3 November 2021.

My hospital bill was RM 216,315.49. The insurance covered RM 110,000. The insurance will not be able to cover my radiotherapy or other treatments furthermore because I have maxed out my limit.

On weekend of 4th December 2021, one month from my discharge my wife notices unusual bump on my neck. She messaged my surgeon and immediately told to come to hospital on Monday, 6th Dec 2021. Surgeon aspirated what looked like pus and requested for CT scan. After hours of waiting for the result, our worst fear was realized. The cancer has come back. :(

We were told the surgeons and the oncologist will need to discuss on what can be done at this point of time.

Finally on 11th December 2021, we were told to immediately to meet the oncologist to discuss the situation.

On 13th December 2021, we were told that I will need to do a PET scan to understand better, where the cancer has spread only after that we can discuss if there are any options or treatment to try.

On 16th Dec 2021, I was told that cancer has come back on the same location and bigger. Surgery is no longer an option. We were told we can try to shrink it using combination of chemo and immunotherapy.

I have to start with 4 cycles and then PET scan to monitor if the treatment is working and body is responding well. Depends on the result, the doctor will decide on whether to continue with the treatment on start with chemo and radiotherapy.

All these are attempts, I know that. But I am willing to try all options available knowing one of them can work and help me extend my life.

Since I am now a self-pay patient, I could not start with my treatment until I have sufficient funds to start at least for my first 4 treatments. Each cycle will be RM 21000-22000. I have only fund for 1 cycle, and I plan of selling my car and anything else that can support my treatment. Friends and family have been with me throughout this battle but I will still need help for succeeding treatments. `

Again, I am humbly asking your good heart for any financial assistance that you can provide. Any amount you can donate will go long way. I know with everyone's help I can get through this.

May we all be blessed and our prayers answered. Thank you.