Death is inevitable, but the trauma to the patient, family and friends can be reduced through understanding and removal of fear. My name is Nishard Mohammed, a forty-three-year-old, male, married with a beautiful wife and three wonderful children and I am a Stage IV lung cancer patient. 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 whilst trying to be athletic. The initial finding was seen as a dark mass on a standard chest x-ray performed before surgery which led to a scurry of activities trying to determine what this mass was, this being initiated by the consultant radiologist and orthopaedic surgeon at the San Fernando General Hospital.
After recovery from surgery, I was referred to the Thoracic Surgical Unit’s Fast Track Program at the Eric Williams Medical Sciences Complex (EWMSC) at Champ Fleurs. A CT guided biopsy was performed which 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 Adenocarcinoma and the analysis used for staging show it was a Stage II a. We also had already consulted our clinical oncologist and using the latest studies and understanding the capability of the Trinidad and Tobago environment, a regimen of Surgery (Lobectomy and Lymphadenectomy) performed by the surgeons at the EWMSC, and then upon recovery four rounds of chemotherapy consisting of Cisplatin and Vinorelbine, were initiated. This treatment was completed during the last week of October 2017.
In April 2018, my MRI showed the presence of eleven metastases, ten located with my brain and one on my spinal cord at C3. Although this was expected at some time, the quickness of this re-occurrence was a bit frightening. However, we were prepared for this outcome and it was decided to do radiation therapy at Southern Medical Clinic in San Fernando. Since then we have had no re-occurrences and am currently taking Erlotinib as I was also tested EGFR+. During this process and speaking to other patients, every cancer is different and treatment approaches must be tuned to the specific case. In my case, the 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 these sessions with the Thoracic Surgical Consultant where the issue of Palliative Care was introduced.
The thing is that I have never heard the term “palliative care” and when he introduced it, he presented previous cases that he was part of, which a point was reached where comfort rather that treatment was needed. As I was in Stage IV, he recommended that we be introduced to the Palliative care unit at the Caura Hospital. 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 organized health service.” My first visit was as traumatic as my surgery as 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 of steam and afforded stability within our marriage which began to get a bit rocky.
She had been dealing with three kids, and me and all the thousands of persons who think they know better because they know 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.
Over the past four months I have lost two uncles, one was sick and the other was unexpected and upon reflection some of the things I learnt in palliative care stood out. The first was that of planning, and how families are affected if proper arrangements aren’t discussed. Secondly, that we need that space where our loved ones can live out their days in peace and give their families some time to rest. 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. Lastly, knowledge about your diagnosed disease, treatments and side effects should be a standard requirement during treatment as it allows patients 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. Fortunately these were all things which I was exposed to at the Palliative Care Unit, located at Caura Hospital and for this I am thankful. As my journey continues, I would like to share my appreciation to everyone who has assisted us to live our life to the fullest.