By Nishard Mohammed
Alone, I screamed, shouted, and cried, “Why me?” The thought of my children growing up without me, wondering if I had done enough to make sure that they would be taken care of. Tears coming to my eyes at weddings, birthdays and graduations, all these occasions for which I may be absent…
My name is Nishard Mohammed, a 45-year-old male, married with a beautiful wife and three wonderful children. I am a Stage IV lung cancer patient, and this is my story.
In June 2017, I was diagnosed with Stage 2aN1 adenocarcinoma of my right lung. It was an incidental finding prior to going into surgery to repair an avulsion of the right rectus femoris tendon which occurred during a village sports day. The initial finding was seen as a dark mass on a standard chest x-ray performed before surgery. This led to a scurry of activities trying to determine what this mass was, all initiated by the Consultant Radiologist and Consultant Orthopaedic Surgeon at the San Fernando General Hospital.
After recovery from surgery, I was referred to the Thoracic Surgical Unit’s Fast Track Programme at the Eric Williams Medical Sciences Complex (EWMSC), Champ Fleurs. A CT guided biopsy of the mass was performed. This was the first of many painful experiences I was to encounter during treatment for this unwelcome invader. The biopsy results showed that the mass was an Adenocarcinoma and the analysis used for staging showed it was a Stage IIa. We had also already consulted a clinical oncologist who guided by the latest research studies and understanding the capability of Trinidad and Tobago’s health sector, a regimen of Surgery (Lobectomy and Lymphadenectomy) followed by four rounds of chemotherapy consisting of Cisplatin and Vinorelbine, were initiated. This treatment was completed during the last week of October 2017.
However, by April 2018, my MRI brain showed the presence of 11 metastases, 10 located with my brain and one on my spinal cord at C3. Although this was expected, the quickness of this re-occurrence was a bit frightening. We were prepared for the next step. Radiation therapy began within days at Southern Medical Clinic in San Fernando. Since then, we have had no re-occurrences and I am currently taking oral medication as a precaution.
During this process and speaking to other patients, we realised that every cancer case is different and treatment approaches must be tuned to the specific case. In my case, even though it was tough knowing that I had cancer, what strengthened my resolve was my doctors and how blunt and matter of fact they were with respect to the treatments and my prognosis. Each step was explained and the action to be taken for any re-occurrence was discussed, so we knew which paths to take. It was at one of these sessions with the Thoracic Surgical Consultant, that the issue of Palliative Care was introduced, as I was now in Stage IV.
The thing is, I had never heard the term “palliative care” before. When he introduced it, he presented previous cases at which a point was reached where comfort rather than treatment was needed. In case anyone reading this doesn’t know what palliative care is, it is defined as “care for the terminally ill and their families, especially that provided by an organised health service.” My first visit to the Palliative Care Unit at the Caura Hospital was as traumatic as my surgery. I had to face the reality that my life’s journey may end sooner than expected. Tears were shed and the reality of planning for the inevitable was raised. Several visits after gave opportunities for my wife, who was my rock throughout this disease, a chance to vent, which allowed for the blowing off of steam and afforded stability within our marriage which began to get a bit rocky. She had been dealing with three children and me and all the thousands of persons who think they knew better because they knew somebody who did it this way and that. I think it was a great blow off valve, I also got lots of heat that was thoroughly deserved. Palliative care also gave my extended family a chance to hear what may occur. That meeting did not go as planned as the knowledge of death is hard to stomach especially when it is for someone close to you.
Remember the game once played ‘police and thief’? If you look at it, cancer is like that thief, hiding in plain sight, unsuspecting, until it strikes. The word cancer creates a sense of fear and dread, and people try not to speak its name. We need to talk about it, clear the air. These are some of the things I learnt during my journey. Firstly, finding out everything about your diagnosed disease, treatments and side effects should be a standard requirement during treatment as it allows you a better understanding of the treatment and how to manage expectations. As I have been going through this journey, I have met several patients not getting the relevant information pertaining to their diseases. This can cause distrust in the system. Secondly, the need for planning, and how our families are affected if proper arrangements aren’t discussed. Thirdly, we all need a safe space to talk, listen and resolve issues within our families, especially when dealing with illness and how persons react to the likelihood of death. My journey is not yet over, I am still surviving Cancer.