Living with the C word

It seems like a long time ago, but I can still remember that warm August afternoon in the summer of 1997. My friend Salma Wafa, who was a doctor, was visiting that day. While we were having tea, she suddenly asked me, "So, did you go to the doctor? What did he say?" I was totally taken aback and told her how busy I had been and just forgot. Immediately, she stood up and said that she will take me the very next day. Two months ago, I had told her that I had a lump and she had advised me to go to a doctor immediately. Since there was no pain, I soon forgot about the whole thing.

The next day, she took me to a surgeon who examined me and asked me to go to his clinic the following day. He mentioned a certain amount of money which I was supposed to take with me as he was going to do surgery. l was in a state of shock hearing all this. Salma told me not to worry, as he was one of the best surgeons in Dhaka. I went home and told my husband about it. He too was taken aback. He asked me why the surgeon was in such a hurry and wondered why I had not been asked to undergo any blood tests. At that time, we were not aware of anything and had hardly ever been to the doctors in Bangladesh. So, the next day, my husband and I both went. Dr Salma was there too. I was not scared, even though that was the first time I was going under anaesthesia. Soon it was all over, and I could go home that very day. I had not told anybody about this, so all was fine. They took some sample for biopsy (which I was not sure why). They said the report would be ready after three days. I hoped and prayed that it was nothing serious and then consoled myself with the thought that it couldn't be that I have a serious disease as I was perfectly healthy.

On the day of the report, I was okay, till I saw my husband's face as he entered the room. He didn't have to say anything. I knew it was what I had dreaded! I pretended that I did not notice his expression and asked him, "bad news?" He tried to smile and said, "Well certainly not good news." He came and sat down beside me with the report and said I had breast cancer; but not to worry, as it could be cured. I could hardly believe my ears and kept thinking "It can't be me, if I die now, what will happen to my children?" My youngest son was only five years old. I suddenly remembered that when I was young, whenever I showed my hand to anyone looking at my palm, they would say "Your lifeline is very short." So now I knew why they said that. Outwardly, I was very calm as I thought if I broke down; the rest of my family would too. So, I listened, as Farouk, my husband, started talking about what to do next. He had already talked to the doctors in the family as well as his friends. Farouk was by nature a very practical person, whose mind always made strong decisions based on facts. Unlike him, it was my heart rather than my mind which always ruled any decision I made. I am a very emotional person and I usually cry during every sad movie and even at weddings when the bride cries. Now, surprisingly, there were no tears. I had become stoic.

The next few days are a blur now. I remember our house being full of people all day. Relatives and friends all came to see me. I was working as a teacher in Scholastica School at that time, and I remember that Sister Emelda, our principal from my previous place of employment, Greenherald, also came to visit me and said she would pray for me. I had taught there for almost a decade before joining Scholastica. It was overwhelming. From morning to late at night, we had company. In fact, the children were upset that they could not spend time with me. All this gave me confidence that I would come back as so many people prayed to God for me.

In my mind was a cyclone of thoughts! Why me? I must have done something very wrong to deserve this. There was this feeling of guilt; all the times I had hurt others' feelings, and I thought this was how I had to pay for my sins. Friends and well-wishers came all day, some tried to console, others to give advice, all with good intentions. There was a lot to be done once we decided where we wanted to go for the treatment. After a lot of thought and planning, my husband decided that "Tata Hospital" in Mumbai was the best option, as it specialises in various types of cancer treatments. Next, we had to take care of the formalities of visa and tickets. My friend Pervin's husband, Iftekhar Bhai came and told Farouk that he would take care of everything. My other friend Anees (who is from Mumbai) made the appointment with the doctor. My sister's brother-in-law, Jahangir Bhai, who was in AB Bank, called and said that he would have everything ready for us in Mumbai, as they had a branch of their bank there. He told the manager to take care of us. When all these people came forward, it seemed like God had sent angels from heaven. By then, I was overwhelmed by everyone's concern and love for me and didn't feel sad or guilty. I wasn't afraid of death anymore as I had faith in the way people prayed for me. I knew I would survive.

Then the moment came when I had to say goodbye to my children, my mother, and my siblings. Farouk's brother-in-law, Dr Imtiaz, offered to go with us. This was a blessing, as I felt that Farouk was totally devastated. Dr Imtiaz travelling with us was a big relief and source of comfort. I tried my best not to be emotional and showed a smiling face to everyone. My sister had come from Chattogram, and did all the packing and my sister-in-law reassured me about taking care of my children. Of course, my mother was there to stay with the kids.

Once on the plane, I kept thinking and praying that this could not be the end. The two-hour flight passed and I could see the flickering lights of Mumbai. I could make out the dark ocean below and it seemed like we would land on water. Finally, the plane touched the ground and we got down. This was my first visit to Mumbai. As we walked out of the airport, a man holding our names on a placard was waiting, and took us to our hotel.

The next day, we went to the famous Tata Hospital which was quite far from the city. My first impression was amazement at its sheer size. It was a massive building. I felt quite lost, so I kept staring at it as I looked around and saw hundreds of people all around me. Men, women, and children going in and coming out. It took us some time as we stood in line at the reception and were told where to find the doctor we wanted to see. Once we found Dr Deshpandey's office, we saw hundreds of people sitting in chairs in front of it. I approached a desk where I wrote my name and was asked to wait. That was disappointing, as we knew there would be a long waiting period. As I sat there for a couple of hours, I noticed how patiently everyone waited without any complaints. There were elderly people, and children — some looked healthy like me, others pale, thin, some on wheelchairs. I can't remember how long I had to wait but finally, my name was called and we walked in with the nurse. Inside, the doctor stood up and asked us to sit. He was a very tall and handsome man, and greeted us with a smile. He looked at the reports and looked up to me and said, "Don't worry, the tumour is in the initial stages, and you look healthy and are still young."

I could not believe my ears! Did I hear right; I was forty-two years old! I had a twenty-year-old daughter, a sixteen-year-old son and a five-year-old child. Then he talked to me asking me about my profession and my children. When he heard that my youngest son was only five and that I had nursed him, he said I was a highly unlikely candidate for breast cancer. "But sometimes we also can't explain why it happens." Listening to him gave me a sense of relief. I asked, "Will I survive? This is an incurable disease and I feel that I am being punished by God for something I have done."

He told me very gently that "Cancer is a disease just like the common cold or measles, if properly treated, it will go away and as for doing something wrong, didn't you see children, even babies outside? Do you think they did something wrong?"

Another very important thing that he said was, "You know medicines and chemotherapy cannot cure you. If you have a positive attitude and believe you will get well for your family, I am sure you will." After this, I believed that this was my destiny and I thought that there must be a reason for this and that I should accept it. I believed that God had given me a second chance. I promised to myself that if I got well, I would go and help other cancer patients.

The next few days were very hectic, running from one hospital to another. Finally, everything was done. For me, the worst test was the CT scan. I felt so claustrophobic in the machine, like I was being strangled and it made me so sick. After the scan, I could hardly sit up and was half lying down on the chair with my eyes closed when I felt a nudge. I opened my eyes to see a small boy offering me candy, "Have this, you will feel better." I hugged him and could hardly keep back my tears. The boy was taken aback. What do you call an action like this? A random act of kindness from a total stranger, a child. It was just so innocent and touching. As the days passed, there were many more such incidents. We got so much help and understanding from total strangers. I remember thinking that maybe when we face bigger problems in life, we go beyond our everyday selfish ways and extend a helping hand towards others, especially after realizing that others have the same problems and are going through the same dilemmas.

I will not go into the medical details of my treatment, as in the last twenty years, cancer has become a household word. There is hardly a family untouched by it. After a slew of tests and visits, finally on 14th August, the doctor said all tests looked good, and the most hopeful thing was that the malignancy of the tumour was in its first stage, so there was a greater chance of recovery after surgery. Of course, chemotherapy was mandatory for at least one cycle. I was quite composed as I did not want my husband to worry. We decided that I would undergo surgery on 16th August. Everything was closed on the 15th, being a national holiday, that too India's 50th year of independence. The next day, we went to watch a movie and I still remember, it was 'Anaconda.' We pretended everything was fine and none of us discussed the surgery.

I have no memories of the 16th, but the morning after my surgery, sometime during the day, the nurse was talking to me about medicine or food. She asked me how I felt. I opened my eyes and wanted to sit when I realized I had bandages and tubes all over and that I was in tremendous pain.

On 18th August, my 23rd wedding anniversary. I opened my eyes and Farouk was sleeping on the couch. As I tried to sit up, the nurse helped, he saw me and said, "Happy Anniversary, you made it." He was with me all the time and that was the reason that I never lost hope.

I stayed in the clinic for a couple of days. Slowly, life was coming back to normal. I could get up, walk and so on. Every day, the doctors and the nurses had words of encouragement. That I was doing very well and soon would be able to go home. After that, we stayed another three weeks in Mumbai. In those three weeks, I had a lot of time to reflect and be grateful to God. I felt blessed too as Farouk was there with me 24 hours and the rest of the family called us every day. Somewhere deep inside, I knew I would not die, as they all needed me; this was a crucial time for my two older children who would be going to universities abroad soon. Prima, my daughter had got admission in York University in Canada. We were all so excited right before the cancer surfaced. She had been anxious about leaving us.

Finally, we left for home. We got a grand welcome from the family. Everyone mentioned that I had lost a lot of weight but otherwise, looked fresh and well. We, as a family, became closer, our bond getting stronger after what had happened. The children were relieved that I did come back, safe and sound. It took some time before all the wounds healed and I was ready to take chemotherapy. I was very worried and scared about this. Much more than I was of surgery, knowing all the harmful effects, how it damages and kills good cells along with cancer cells. The doctor's words, "Cancer does not kill, Chemo does," were always ringing in my ears.

For me, the hardest part turned out to be finding the vein to inject the medicine. It took the nurses hours every time. My arm was bruised and swollen from repeated pricks. Once that was done; I was expecting the worst to come. Maybe I was so well prepared that it was not that bad. Of course, I couldn't eat, felt dizzy and just miserable for the next few days. Soon, I got used to the routine. My sister-in-law, who is a doctor, was always with me during the chemotherapy sessions, taking my blood pressure, pulse, giving me a lot of liquids to get the toxic matter out of the system. Without her, it wouldn't have been so smooth for me. In the meantime, I joined school (Scholastica). They had reduced my classes and were very co-operative. I used to take Chemo on Thursday and attend school on Sunday. Soon I started losing hair; I didn't have any eyebrows and couldn't recognise myself in the mirror. My family and friends were so nice to me and gave me the strength to cope with the situation. So many people came to visit me that I felt truly blessed.

For the next five years, I went to Mumbai at least half a dozen times. Every time, Farouk went with me and we always went to some other places afterward so that it seemed more like a vacation and less like a medical necessity. The first time it was Goa, then Delhi, and The Taj Mahal. We went to many places near Mumbai— Khandala, Kolkata, Goa again, and the backwaters of Kerala. Later, we went to Nepal, Bangkok, and Sri Lanka after the follow-up visits to Mumbai. Before this, Farouk was always so busy, we never had time for a vacation. We often joked that these check-ups had turned out to be a blessing in disguise.

Finally, I was free of cancer. I thanked God that he was so merciful.

But unfortunately, that was not the end.

Living with the C word

In April, 2012, my husband went to Bangkok for a conference. He was working as a Senior Economist for The Asia Foundation and went there often. Before he went, he had been coughing for quite some time, so I told him get a medical check-up there too. He never worried about any health issue when it came to himself and being a chronic smoker, always said this is a 'smoker's cough.' Anyway, since we all insisted, he agreed. He had an appointment on the 19th of April. On the 20th of April, he called me. He sounded quite serious and told me that he got a call from the hospital, and the doctor showed him his chest X-ray and there were tumours in both his lungs. I didn't know what to say. I just listened while he continued as to what were the next procedures as vigorous testing needed to be done. I hardly heard what he was saying. All I remember was he told me to get my Thai visa as soon as possible. I was in a daze. Then Arvid, my elder son showed me on his phone what this could lead to and said, "Ma, you should be prepared, most probably Baba has lung cancer." I couldn't believe my ears— NO, NOT AGAIN!

Arvid left for Bangkok the next day to be with his father. The 1st of May was the day that my daughter-in-law, Kaniz and I went. Seeing him, I was relieved as he looked fine. The next fifteen days were spent mostly in the hospital, tests, CT scans, PET CT, we all went everywhere together. Farouk's boss Kim, who was the Country Director in Bangkok, would also come and join us. Once I asked him "You must have office and you are here?" He replied, "I am working here too," showing me his laptop. This shows true friendship, I think. The support he gave us just by his presence cannot be expressed in words.

Though we all knew what the report of the biopsy would be, we held on to hope, till the doctor gave the verdict. On that day too, Kim was there with his family. Farouk was diagnosed with 4th stage lung cancer. I couldn't believe my ears when the doctor told me! Not again, and that too 4th stage! My life felt over that day. After that, the next three and a half years were a struggle to survive. It was a constant war against a very strong and bitter enemy. In all this, Farouk never lost hope and smilingly went to the hospital almost every other day.

We were referred to an oncologist, but we did not like his attitude, so went to another doctor. He was a very pleasant person, seemed to be very well informed about the latest medicines. The doctor told us the pros and cons of the medicine. His belief was to start with the latest ones as they had fewer side effects. The medicines would be aggressive to the cancer cells and destroy them for the time being. We had to consider the fact that it was 4th stage, so time was precious. Later on, after the cancer cells diminished, we could try the more conventional ones.

Listening to all this, I suddenly realized that he would never get well.

He had to get a chemo port inserted by a minor surgery so that he could get the chemo given through that so then there won't be the hassle of finding the vein every time. (As it did in my case). We were all with him in the hospital the whole day; it looked more like a family get-together than a sombre occasion like getting ready for chemotherapy.

After the loss of hair, he started wearing a cap, and even experimented with different kinds of hats. Luckily, his hair grew back again every time. He took almost 40 chemo therapy sessions. Even the doctors were surprised at his stamina. He was so particular about the medicines, blood reports and tests. Had an excel spread sheet from 2012 to 2015. Again, the doctors were taken aback at how meticulous he was!

Whenever he felt okay, he went to office, or did his work from home. We all pretended in front of him that everything was normal. We started to fulfil all his wishes, prepared his favourite dishes, (though he could barely eat anything) took family pictures whenever an occasion came, thinking this might be the last. He always joked, "You are taking this photo because I will not be here next Eid. Well, I will keep an eye on you all from up there." In spite of having intolerable pain, he always had a smile for his friends when they came to visit him, and he would want them to stay longer. When they said, "Apni bhalo hoye jaan abaar aashbo," his usual reply was, "Ami to er che bhalo hobo na, kharap e hobo." It broke my heart whenever he said that with a smile.

I thought I would write about all the details, but I can't. I want to give a message to everyone that we should learn from our experiences and never give up and complain. The last three years of his life, Farouk lived to the fullest and we all learnt how to live our lives, with the strength that we got from him. As a family, we started to spend more time together and enjoy "The Gift of Life." Slowly, we could see him fading away in front of our eyes and he himself knew his days were numbered when the doctors started palliative treatment. We just kept hoping, until the day came when he left us all. As we went to the hospital, it seemed like a regular day, we never thought that he would not return home with us.

That morning, he got ready and we left the house like we did the day before, not knowing that this time I would return home alone as he would leave for his eternal abode in heaven. Thank God we were by his side; none of us knew that would be the day he would leave us, as he went very peacefully, as if slipping into a deep slumber. That was the 2nd of October, 2015, and I still think of him every day and will never get used to life without him, till my last breath.

Farouk always said, "Why don't you write about how you survived cancer — it will give others hope. Share with them how, together, we overcame that and now it is just a memory." Little did he know, that though I did survive cancer, it would visit us once more and this time, cancer wouldn't go back empty-handed.

I do hope that by sharing my experience, I can reach out a bit to any individual or family who has been through this painful, horrible nightmare. People who have had cancer and survived and lost loved ones to it; know you are not alone. The trauma, the pain and the memories of those days will always remain. Maybe we will become more humane, compassionate, and kind towards others. Those of us who have been given a second chance should, like the Phoenix, rise up from the ashes stronger than before.

Photo: Collected
The writer is a teacher of English Literature at Sunbeams School