Introduction

During these coming months, I’ll be publishing short chapters on Cancer and my experience of caring for a family member and what does it mean for you here on The Naked Soul blog. I am documenting my day to day experiences as my dad has recently been diagnosed with stomach cancer (“squamous cell carcinoma”). I hope this is my first and last experience with anyone with cancer in my family.

“Cancer, you really suck. Please leave my family alone.”

 

Chapter 1

The letter C immediately paints the picture of the letter D. Cancer. Death. It is not cancer or pain of chemotherapy that the patient and family member fears, it’s the inevitable, the ticking clock of time and life that frighten us the most. Cancer is a tough battle where you need a whole army. Currently, we are four people caring for my dad full-time. There are emergencies, there are good moments and there are really down times including depression, tears, anger, denial, misery, fear, pain and hope.

If there was a conclusive proof for the afterlife, death would not frighten us anymore. But, even with firm belief in having a good afterlife, cancer is feared more than death itself.

What would you do if you are suddenly told you have just one year? (And you are not even strong and healthy enough to leave the bed.) What would you do?

 

The Believe in the Science
All diseases are treatable and curable. All stages of diseases are treatable and curable. The first step towards having a universal healthcare is to believe that optimal health is achievable for everyone.

If a cancer has grown into a big tumor and has spread into nearby or far organs, it is still treatable.

Think about for a moment: what kills a person with cancer? How can we prevent it from happening. What do we need to do here? What is preventing us from taking and executing the necessary steps.

For example, if the problem is we cannot perform surgery for a tumor that is near to a major blood vessel. Is it due to the fact that we do not have surgical precision or if we rupture a major blood vessel, we do not know how to fix them? May be both and then some more.

Irrespective of the number and severity of the challenges my point is every difficult steps can be identified, listed, and discussed. What we need is finding new solutions and testing them.

Day 1
My father was feeling stomach pain. He had recently visited Gaya and was suspecting something is wrong. He was feeling feverish. He fell sick and the local doctor suspected my dad has Typhoid. After doing some examinations they prescribed him two weeks of typhoid medication.

 

Day 14

Dad was still having high fevers, low platelets counts and was extremely weak. He has lost a lot of weight (mostly muscles), his ribs were showing up, his thighs became slimmer, his back was hurting real bad.

Upon noticing that my dad’s condition is not getting better, my family decided to take him to another doctor.

On second opinion, we took dad to The Mission Specialty Hospital in Durgapur. They found severe Dengu infection and admitted my dad. 

The infection has spread to his liver, small and large intestine. Dad stayed in the Mission Hospital for next eight days and was also treated for stomach ulcers. His WBC counts were 21,000 and went up as high as 29,000. Things were not looking good.

But, he got better and was discharged. During this time, all kinds of tests were run and X-rays was done, CT scan was done and MRI was done. Nothing suspicious, nothing more than a bad infection that can be treated completely in no time.

Cancer In Family

The Long Diagnosis
Dad came home with his follow up appointments scheduled at Mission. He was still weak but able to eat and talk. His back pain was still persistent. His appetite was poor, having severe constipation, and his overall health was not improving even after the treatment and medicine given at Mission.

One night he got the high fever and his health and energy level plummeted to the extreme bottom. He was not doing well and we did not know “why?” No one knew.

This was tome to take home to an even bigger hospital. My brother, one of my uncle (dad’s younger brother) and one of my cousin immediately took dad to Kolkata. From Kolkata, my brother, uncle, and dad flew to Chennai. They were rushing to CMC Vellore. 

This is when I got serious and started to intuitively feel something is wrong with my dad’s diagnosis. I told Neha (my finance), I have bad feelings about Cancer and I don’t know why but from past 2-3 weeks I have been reading, researching and watching documentaries on Cancer.

It’s weird, I know, but I was having precognition about my dad’s real condition.

Chapter 2
Day 41 (January 29, 2016)
I arrived Banglore at 3:55 am on Friday morning. I took Vayu Vjra express bus to Majestic interstate bus terminal at 4 am and reached there at 5 am.. Once There i I took a second bus to the satellite station.

I took another bus to Vellore bus stand for Rs. 152. From there I took an Auto for Rs. 70. I was received by my cousin and he took me to the lodge where they were staying. The lodge provides the bare minimum. The hygiene was acceptable but with open questions.

I came to hospital to see Dad at 1 pm. We were expecting to meet the cancer specialist doctor at 2 pm. He was supposed to go over the stomach biopsy diagnostic results.

Day 42 (January 30, 2016)
I woke up at 5 in the morning and got fresh. I believe due to jet lag my sleep was ended early. I briefly talked with my brother and then left for the hospital.

It was still dark and I went on a walk on the main road looking for other lodging options, particularly looking for lodges with kitchen.

I was also looking for shops or medical stores where I could buy paper rolls, plates, and cups. After a brief walk, I entered CMC campus and took a brief inside tour to familiarize myself with various buildings and units such as the blood bank, OPD, Radiology, and Scan building, etc.

During this morning our I noticed women praying in the chapel and at an outdoor candlelit stone vigil.

I turned back and came to the W ward where my dad was. I gave Rs. 200 to the overnight caregiving lady (Aaya) and she asked for some morning tea allowance. So I gave her another 10 rupees.

Here the hospital only allowed the female companions or caregiver to stay overnight the patients. For male visitors and family members, the maximum allowance is 2 person at each time and from 6 am – 9 pm. The male family members can stay outside the ward, near elevators for the night if they chose so.

It’s clear to me by now that it would make sense to bring mom here. Or someone who can be dedicated to the task of healthy cooking.

But there was another problem with this arrangement. My mom has the bad knee problem so if we bring her here, we will have to first fix the basics.

The basics of caregiving are so backward and risky here. Everyone who is looking over a patient relative are themselves having a poor diet, poor lodging condition, poor personal hygiene and poor behavioral habits when caring for the patients. For example, not using the antibacterial hand soap before feeding a patient.

So I made this list of items that I thought we need to increase our safeguard against infections, other diseases and to protect ourselves and our dad.

Paper cups, plates, spoons, knives, Plastic Food Wrapper, Aluminum Foil, Straw, RO Water filter, Juicer, Napkins, Kitchen roll, Toilet roll, Shampoo, Skin moisturizer, Anti-bacterial hand sanitizer, Writing pad, Vomit bag (lunch bags), plastic bags, face tissue, Wipe (wet) tissue.

Then we need to cook our own meals. Currently, we are buying food outside and feeding our dad and also eating ourselves. The food outside is street dhabas. It’s just hard to digest to see what I am seeing. I want to save my dad and I want to my family to be healthy. This was hard.

I knew I need to buy fresh fruits, make juices at home, start meal prepping, buy basic Cooking utensils and buy one smart Phone here with SIM card and iPad for entertainment.

Next, I need to find each of these items.

Chapter 3
Jan 30 continues

At 8 am the hospital did a routine blood test. Only one tube of blood (? ml) was taken. But it clicked my mind that with one tube of blood taken each day and with difficulty eating, he will no doubt have fatigue and low energy. He needs a good, nutritious diet every hour to make up for the lack of food and ongoing blood tests.

The chief oncologist came to visit my dad at 10:30 am. Afterwards, he met with me and my brother. The doctor started by saying, “it’s a stage IV cancer because it has spread to all over bones and into the lymph nodes.”

He continued, “there is no cure for this and gastrointestinal cancers are not the good kind of cancers because they do not respond well to chemo unlike some other forms of cancers such as breast or lungs.”

The doctor explained his plan which was to begin chemo on Monday every week. They wanted to do small chemo doses which have fewer side effects and the benefits are the same of large chemo dose.

We went over some of the questions we had and got some answers none of which was very good (what we were hoping for in terms of treatment and prognosis options).

1. What is the primary cancer? The primary cancer is stomach cancer. (Squamous cell carcinoma?)

2. How far has it spread? It has spread into bones (all over) and into lymph nodes. (How far into the lymph node?)

3. Which stage? Stage IV

4. What is the current prognosis? As the data shows.

5. Can you do stomach surgery? No, not now, not later. The cancer has spread to distant parts. The stomach cancer doesn’t respond very well to chemo. Surgery is not an option.

6. Can chemo be done along with radiation? Radiation is done to alleviate pain (it’s neither part of the treatment nor cure)

7. Can surgery be performed after chemo/radiation? No, due to the reasons mentioned above.

8. Is the cause bacteria or genetic mutation or environmental or food? We can’t say. This cancer could be caused by any number of reasons or a combination of reasons. The growth must be going on for years without any warning symptoms. That’s the nature of this disease. But it may not be genetic (caused by a particular hereditary genetic mutation) as in those cases cancer show up earlier in age.

For example in the 40s and 50s. But since your dad’s age is almost 60, it seems more like old age cancer.

9. If all treatments go well, what would be the new prognosis? As long as the chemo controls the cancer tumor growth. But eventually, the cancer growth will overtake chemo.

10. Has cancer spread into bone marrow? Yes.

11. How far into Bones? All over. Every bone has bone marrow and the cancer is showing everywhere in the bones.

Our time with the oncologist in the Infectious Diseases (Ward W – West) hallway left me with more questions than what I had before.

1. How much of stomach has the cancerous tumor? Do we know the source location? Or are there multiple source points in the stomach?

2. How far has cancer spread into lymph nodes?

3. Can a DNA testing be performed on his cancer cell and on his normal cells? (To compare and find out the exact mutations)

4. You mentioned earlier, the bone marrow looks sickle cell. Is it anemia alongside cancer? Is he having two separate issues? Why are the cells sickle shape? Could that be the reason he is feeling fatigued? What can we do?

5. Immunotherapy? Is that an option here?

6. Have you tested for H. Pylori bacteria?

(and many more to come)

I definitely need to do more research now. I also felt we need to take a second opinion. I had my gut telling me that CMC is not offering my father anything more than palliative care. And yes, we need that. I am all for my dad’s care and I want him to feel better. But that’s not all. And that’s not all, he doesn’t want that. He wants to live. He is fighting. He wants to care for my mom and he wants to be out of the hospital, healthy and functioning.

 

Chapter 4 (January 31, 2016)

My mom and younger uncle will reach here on Tuesday. She is also looking for a full-time cook to bring with her. It’s great news.

For next two days, we will be still buying food from outside. We will be taking precautions with what we are eating ourself or buying for dad.

Earlier today, two of my brothers went to look for a better, cleaner, bigger lodge with kitchen and phone network. We have been here without the internet at both the hospital and at the lodge.

We have found it to be very hard to not have internet because while you are in the hospital, you want to research something. There are always questions in your mind. And no one can give you the answers. The patients are too many and the doctors are far and few. Internet access is your only hope of catching up with the information overload and learning more about various treatment options and its success rate and/or side effects.

Meanwhile, Neha found out that blood group A is shown related with stomach cancer. My dad, my brother and I, all three of us have A+ blood group.

My friend Alam asked me to get a second opinion. His father was diagnosed with early-stage Colon cancer and was completely treated at Tata Memorial Hospital.

He said, “I talked to my father. He told to get the report (Particularly of the biopsy). Also, in addition to the reports of biopsy, ask them to give the slides too. Press for it or they won’t. Without the slides, the report of biopsy will not be accepted at other hospitals. So, be very adamant that you need the slides too.”

It is common that cancer is a team-based treatment. Based on the biopsy report and what kind of Cancer is present, there are experts and its decided by the panel of the doctors at any particular hospital.

The ward nurse confirmed that the new bed is ready. The attending doctors came to see Dad. I brought up the question of if there will be a mini refrigerator in the new room. They mentioned that there are few room options and rates vary so check with the ward nurse.

Dad heard the conversation and asked me how much is the room cost? I said, Rs. 3050/day for double occupancy, Rs. 5500/day for single and Rs. 10,000/day for corner single room with refrigerator, phone, and other amnesties.

Dad looked in unease. His face was clearly showing he was feeling worried.

“It’s very expensive. How will we afford?”

“It’s not much. We can afford.”

“But if you add up for a month, it’s a big amount.”

And immediately he started sobbing. My Phupha and I began to convince him that it’s not a lot of money and it is well within our financial hold. We can take care of it. You have to just focus on your treatment. Focus on eating, focus on getting well faster, focus on getting discharged soon.

By this time both of my brothers arrived and they saw dad crying. They asked what happened? I said papa is taking stress about money.

They chipped in and repeated the same words. The treatment is well within our capacity and we are all in it. Don’t worry. But my dad was still feeling the pain. I could understand his emotions.

His main concern which remained unvoiced and only came out as tears were all my life I worked hard to provide for my family and I am going to spend all of that money on my own treatment which I had patiently saved for my family. This is painful.

What can a man do? What must a man do? Will you leave your wife and partner for life behind, alone? Or, will you give up the will to live? It’s a bitter and painfully frustrating situation to be. I could feel dad’s heart. I felt his tears. And there was nothing I could do at the time but I knew exactly what to do when the opportunity arrives.

The head nurse came in and said the bed is ready. Pisa fed one banana to dad. The wheelchair was ready and an attendant was present to help transfer my dad.

We helped dad to get on the wheelchair and began to walk towards 713A. The 7th floor in the A Ward hosts all cancer patients. Dad got bed A in room 713.

The room had TV and AC. The bathroom was cleaner and bigger than the previous ward. In fact much cleaner.

The new room had another leukemia patient, a ten-year-old boy. The boy’s grandmother was with him.

He was admitted after he suddenly fell sick and doctors found out that his body is not making blood. The doctors in Patna city where he was admitted referred him to immediately go to Delhi or Mumbai. His family decided to bring him to CMC.

The boy despite his tender age explained his experience with chemotherapy. My brother showed my dad to look at the little kid who is full with energy and is talking with excitement.

My dad found his strength from looking at this kid.

The following hours passed slowly. In late afternoon all three brothers, we went out to look for apartments to rent for a couple of months.

We finally found a place with decent size room with attached kitchen and bathroom.

While waiting for the elevator my brother peeped a few times inside an open room. The group of people seemed to be from our hometown. They were curious too and they invited us inside.

We gladly accepted their invitation and asked if we can take a look. They said, sure take a walk around and answered of our questions. They offered us thekwa to eat and when we inquired told us that his dad has lower body paralysis and that’s why they are here.

In past few days that I have been here in Vellore I have seen and talked to so many sick people that my heart lives in my mouth now and my heart weeps its bitter tears inside my hurting mind.

At 9:30 pm we reached our lodge and 2016 star movies award was playing on TV. I was lying down on bed along with Pisa and my cousin. My brother was arranging his bed on the ground.

My cousin said, I want to ask one thing. Is that okay?

I said, “yeah, sure!”

He said, “I want to ask you why you did love marriage?”

I replied, “not marriage. We are engaged.”

He said, “yes, engagement and (and I mean) marrying later. So why did you do that? Our family did not expect this from you.”

He continued, “how much hurt it has caused to all family members. I am not saying love marriage is right or wrong but I think people who do love marriage are selfish!”

I said, hell no. You are married with two small daughters and you still talk and think about other younger girls and even about the doctors and nurses in the hospital.

I was thinking to myself, his mindset is sick. For him family matters big time yet his wife deserves very little of his respect. He doesn’t even love her. He is confusing his husband and fatherly duty with love. This is fucked up.

I continued, “that is because you have never known, felt or understood love. I thought inside my mind. Stop fucking judging. You are causing extremely emotional distress.”

I was feeling extremely hurt insure and thinking dad is dying. He is feeling depressed. He cries. He is in bad bad situation. And what is he taking about right now! I could not sleep for hours and kept thinking. How much I hate these kind of people. If my dad was not here and if he was not here to help, I would block this kind of people out of my life.

I am going through extremely turbulent roller coarser every hour. Every hour is some sort of emergency. And feeling you are not able to do anything, feeling you are dependent of people who talks bullshit about you, those who doesn’t  understand what care means. I am not able to do it. It’s hard to handle.

 

Chapter 5 (Feb 1, 2016)
I woke up at 6, an hour later than my usual wake up time. During early morning hours, I was still feeling hurt and dreaming about the words that my cousin had said last night. This combined with the feeling of what is going to happen to my dad was taking its toll. But I had to let it go and get up and get to work.

I got fresh and went to buy coconut water. I asked the price and then said give two coconut water to me. The guy did not understand me and gave me four. I gave him Rs. 150 for four of them at Rs. 30/coconut. He was supposed to return me Rs. 30. The other guy standing there asked the vendor to give me 30 but he refused. He was cutting 5th one to take my 150. I refused. He resisted and was persistent on giving me the 5 coconut for Rs. 150.

I was already frustrated with my experience with them. I ordered two and take gave me four. And now they were trying to forcefully sell me five. After some brief argument and with the help of another vendor I got Rs.30 back. I headed towards dad’s ward.

I reached his room at 6:30 am and he was sleeping. I asked the Aaya if he had any food or gone to bathroom. She said she gave water and took him to bathroom once last night. She said the other lady has been washing cloths in bathroom since last 45 min. She seemed frustrated and annoyed. I could understand, she was not able go do her job and she wanted to provide care.

I released her and gave her payments. After she left I asked my dad if would like to eat. I gave him one organic banana and ate one with him. Then I gave him the fresh coconut water that I had brought. He said, this coconut water tastes fresh. I said, yes, I just got them. Next time, we will try to but immediately before drinking. Storing coconut water takes away its taste of freshness.

After my dad settled down, I texted Neha and vented about my situation and feeling of inadequacy. She tried to comfort me with her best but there was just too much happening. The events were developing fast.

A physician attended came to our room and started asking questions on medicines and current situations. She was extremely unprofessional, impatient and a bitch. She was telling if we want to stay here or take my dad home. She was talking loudly in front dad and said, his stage is incurable and therefore after few rounds of chemo we should continue at a place near us.

The attending physician visited my father around 2 pm and a nurse brought all the new medicines as well as the chemo drug Taxol.

They had my dad sign a waiver and explained you are going to go under chemotherapy.

My brother gave bath to our dad and chased him in new cloths. All of us encouraged my dad that he has to eat now. The doctor also said him to eat until you vomit. If you feel like vomiting, still eat. If you vomit, no problem, we will take care of it. But your only job under chemo is to eat well. So just focus on eating. Eat, eat, eat whether you feel like eating or not.

Starting at 3:30 pm the nurses started to give him anti-allergy and other preparatory meds to him. Everything was now given intravenously through a site in his right hand.

At 4:10 his first chemo was administered. Since his pain medication was over the nurse had to give him shot of tramadol painkiller. My dad took his entire first chemo under sleep. We were closely monitoring him and the first session went by without any adverse effects. Perhaps, besides a little bit of itchy feeling that we observed when we woke him up briefly to check on him.

He was hit hard by two drugs causing his state and we let him sleep until almost 8 pm.

At 8 the hospital dinner arrived. We have requested for it for next few days until we found a place to take him and be able to cook.

We woke him up and he ate better than previous nights. We were very happy. He had some rice, beans, curd, and some vegetables. He took his meds after his meal and also has one cup of milk. All very good.

 

The Glitch in the System
At 8:30 pm my brother and I began to feel concerned when we found out that our Aaya has not arrived yet. The aayas are assigned between 7-8 pm only. It was getting late and there was no sign of her. I went to front desk where all nursing staffs sit and inquired about the situation. She first suspected that we have not requested an aaya for tonight. I said, yes, we did request. And my dad had his first chemo today and he cannot walk on his own so there is no way that there can’t be an attendant or someone to look over my dad during night time. Hell no.

I returned to our ward and asked my brother if he had truly filled the aaya request form. He confirmed that he did and so we both went to front desk. By this time the staff nurse has done some inquiry and digging and it was true that we have made a request and somehow the nurse who was supposed to deposit the form and make a request forgot or missed to do it. It was clearly on CMC.

The staff nurse called her supervisor if one of the make relatives can stay overnight in our case and the supervisor gave her a firm “no”. There was no way her supervisor would allow a male attendant to stay overnight and there was no way we were leaving dad alone for the night.

After some thinking, walking, and brainstorming, the staff nurse came to our ward and said, okay one of you can stay but please don’t tell anyone or I will be in trouble. We said, OK no problem, and we don’t want you or the nurse who missed to request for an aaya to get in any trouble. We just want to be here with our father.

 

The Dirty Village
I returned home around 9:30 pm and went out to eat with my cousin and pisa. I was feeling cold like symptoms. I was feeling little feverish, body pain and beck of my right knee was hurting. My temperature seemed a little higher, breath was coming out a little hotter, all flu like symptoms. I guess just eating outside for past 4 days put me down with cold.

Nevertheless I reluctantly ordered two chapatis and egg curry for dinner. Every time I had to eat outside I absolutely hated it. I was literally surrounded by thousands of of ill people and their relative all the time when I was out in the street or while eating at a dhaba. Eating outside meant inviting sickness home with open eyes. I began to mentally count when we will get a place where we we will be able to cook our own food.

 

The Evil of Having No Understanding
It was time to go home. Three of us got back and I quickly washed my hands, feet, and face and began to arrange my thin mattress on the floor while my cousin and Pisa took the bed where they were lying down and watching TV. I tried to sleep to my best and with all the lights and noise it was hard. Every night for the past four nights I hated the TV watching habits of my relatives.

But it was not all. This time both my cousin and Phupha asked me when is your wedding? I said there is no wedding. (Papa is fighting with gastric cancer). We have canceled and postponed everything for the indefinite time. So I don’t know. I will see.

Phupha asked I will find a girl for you. I must be invited in your wedding and I am not going to the U.S to attend your wedding.

My cousin intervened and asked our Phupha, “what if Salil will do wedding and reception in India.”

Phupha replied, “no, no, from my heart, I don’t want to attend your wedding if you are marrying this girl.”

He asked me is it okay if I find someone for you. An engineer girl,  a doctor girl, beautiful girl, whatever is your criteria.

I said, “NO, I can’t say yes to you.”

I was feeling extremely annoyed and angry by this time. I wanted to cut off the topic right there, so I turned to my side and parented to sleep.

But my cousin and phupha were still full of gas and there was still a lot of fuel to burn. Phupha continued that Dad has cryingly told him one day about his disappointment about my relationship and the choice of girl who I love and want to be with.

I knew perfectly well that he is taking bullshit and there was nothing I could say. I was brimming with anger. This is not the time to talk silly and this is not a good occasion to speak anything unkind or false about my dad.

I would have almost shouted and left the room and stayed somewhere else for the night and would have talked to my dad, brother and mom to let go of all these negative people. I wanted no negativity anywhere near us when we all are trying to fight cancer.

I was convinced at this point that none of these people have any clue about the gravity of the situation. Because no one has fucking taken the time to truly listen to the doctors or read the reports. They are happily watching TV where every second is critical in finding out about how we could seek a second opinion, where to take our dad, what kind of pain cancer patients feel and how long can this treatment last. What are the side effects? How can we minimize the side effects?

These and hundreds of other questions are screaming for an answer and we are all running with time. We have to run faster or we will be left behind in pain. 

But unfortunately, this was not the end of this night. My cousin and phupha continued to push, poke and spit bitter words for next 30 min while I kept lying sideways listening and staring on the empty wall.

They said:

“My dad has been hit by my actions.”

“He is broken because of his son’s action and pressure from society.”

“Break your engagement and allow us to find someone for you.”

“This kind of marriages will last 4-5 years maximum and when she will suck you, she will leave.”

“If you break up and marry according to our will, our family will walk with their chest up and chin high. You have hurt us all.”

“Your dad will jump up and sit up immediately if you would tell him that you will marry according to family choice and wishes.”

“You have brought down the family and we are not in support of your action. (Your marriage will not work.) we are trying to help you because we care for you and love you.”

“I have just said what is in my heart but now it is up to you to decide afar ever you want to do.”

“We are not happy about your decision and engagement. No one is. People are not saying but no one is happy.”

The fan was running in high speed and I continued to look sideways towards an empty wall, keeping quiet. All this time they both failed to notice that I have caught a cold.

They continued to watch TV and I remember staying annoyed for some time due to the TV volume but I managed to fall to sleep while the tube light was still on.

 

The Next Morning
I woke up suddenly in the morning. I checked my phone and it was 4 am. I went to the toilet and sat down and began writing this chapter.

As I am finished with yesterday’s event and it’s already 5 am now. I am going to get fresh and would head directly to the hospital where my brother is. I am thinking of sharing some of it with him but since he is under the tremendous amount of pressure himself, I am debating if I should or should not. Maybe I will not. Not right now. I am going to talk to Neha. I need her here.

(to be continued…)