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.