Subha Lakshmi is a caregiver to her mother who had breast cancer. She is a 27 year old IT professional. Her mother was diagnosed with stage IV breast cancer in April 2018 and passed away in May 2020, after 2 years of treatment. Being the sole financial bearer in her family of four. She took care of her mother financially, emotionally, and physically throughout the journey. Today she shared her panorama of her mothers cancer journey. 

The journey 

Back in 2018, I got to know from my mother that she is not at home and is at my uncles house and is going under surgery. I was away from my native home in Odisha, for my job. When I heard the news I got suspicious and asked for more information regarding the situation. I got to know that my mother had a tumour in her breast and prayed it shouldnt be cancer. Later I got to know that she had the tumour for a long time of five years. Even though she knew she had not informed anyone. Later she admitted that she had a lump in her breast in her 20s but never felt any pain or was bothered by the lump. She ignored that. And now when she was diagnosed it was stage IV. Back then when she started to feel pain and changes in the lump she visited a homoeopathy clinic for treatment.

She never spoke to anyone about her condition, so I was not aware. In 2018 the size of the lump increased. She got scared and went to visit the doctor. I then came to know about it from my mothers sister. After all the tests got done I asked my uncle to email me the reports, so that I can at least be aware of the condition with the help of the internet. I also had friends who were in the medical field so I forwarded the reports to them and they also confirmed it was cancer. I was shocked to come across the diagnosis. None of us informed our mother about the diagnosis. She got to know that she had cancer during her first chemotherapy session.

My mother later confessed that she was scared of any surgical procedures and so opted for medication hoping it can be treated. But little did she know that it was cancer and had to be treated with correct and appropriate procedures. At this stage, we have to accept the diagnosis and get it treated without any more exceptions. 

When we visited the doctors they told us the diagnosis, considering her age being above 40, it will be of no use to opt for the treatment as most of her organs like her liver and lungs have been damaged except for her brain which will allow her to survive for 3 to 6 months without treatment. They can do chemotherapy and radiotherapy that can increase her life expectancy. 

When we told mom that she has to get treated for her condition, the very first request of her was to ask the doctor for other treatment options other than the surgery, even when she was not aware of the diagnosis. I had no strength to disclose to her that it was cancer and not just a tumour, so I assured her that we can go for medication only. My mother was diagnosed in April of 2018 April and after the treatment in 2021 may she passed away.

As she was healthy and active she endured the chemotherapy sessions better than any of us had expected. Even the doctors were surprised to see her go through her chemotherapy sessions. She was good most of the time except for the few days of side effects after the chemo sessions. She used to do the house chores all by herself. 

After 6 months of starting the treatment, she got exasperated and constantly questioned about how many days the treatment will continue. I haven't told anyone in my family about her cancer stage as the doctors have already given her the time left. Later I had to tell my family members as her condition started deteriorating. She had severe back pains. We went to the doctor regarding her condition. Although she has endured many side effects of chemotherapy she was not able to tolerate further complications that started developing. 

I reasoned with my mother that as the diagnosis was delayed we have to get the treatment for a longer time to compensate for the time we lost earlier. I was with her all the time after the diagnosis. 

I took my family to the place where I was working as my native is a village and the people were not positive. The people in the village used to tell me not to opt for any treatment, thinking that cancer is not treatable. As I did not want my mother to be surrounded by negative people and negative thoughts I took her out of the village. I am the sole earner of the family, with my father having a neurological condition, a younger brother who is studying, and my mother in the final stage of breast cancer. I had a very hard financial time adjusting the money for my mothers treatment whilst attending to other financial necessities of my family at the age of 24. Despite the struggle, I decided to get the treatment done for my mother because I thought it is my responsibility to take care of my mother. My salary was approximately 45,000/- a month but a chemotherapy session cost around 1,00,000/-. 

When I took my mother to her first chemotherapy session, I convinced her that there is a saline medication for every 21 days and she has to do nothing else. To which she accepted without questioning. Also, she had fewer side effects compared to other cancer patients. She used to cook for us after coming home from the chemo session. She used to take rest when she had vomiting, otherwise, she was very normal. 

After one chemo session, she told me that she was aware of her condition and told me that shell get the treatment and endure it till the end and will go through the procedure. Everything went well until a year after treatment. She started experiencing back pains. No painkillers were helping her. Her Liver started to get affected to which the doctor started a different form of treatment. For the first few months she got a chemotherapy session in a hospital and later for 6 months, she got oral chemotherapy

After the liver damage, another line of chemo started. Earlier the treatment was once every 21 days which was then rescheduled to twice every 21 days.  This increased the cost of treatment by three folds. The doctor then asked me if I could afford the treatment, to which I responded that if it helps with her condition I would gladly adjust the finances for the treatment. And luckily the treatment helped in alleviating her pain and helped to cope up with the symptoms that were worsening. 

In 2019 December she completed her treatment and went for a CT scan for observing the treatment and her condition. The reports showed barely any signs of improvement of her condition. Later she started having colds and headaches. Earlier the doctor has informed me that aside from the side effects of chemotherapy if I observe any other symptoms a brain scan should be taken. Suddenly one day in the morning after waking up my mother told me that she is not able to walk which indicated that cancer has affected the brain. After the CT scan, the doctor said that the condition has worsened. Those words affected her a lot. I have requested the previous doctor not to disclose any negative information in front of my mother to which he accepted and told her that the treatment is going well and she is stable. But during the day of the CT scan, another doctor was present and was not aware of my request due to which he spoke out loud about my mothers condition in front of her.

After getting the chemo session on that day and reaching home she started to act differently saying that she doesnt want to eat or do anything. She lost her hope of getting better. She lost her cognitive ability in a span of one week. The doctor suggested radiation as a part of the treatment. After the last day of the chemo session in February 2020, she started having seizures and started showing many symptoms like losing balance, and cognition. My mother requested not to take any further treatment. Her condition worsened very quickly and seeing her in pain would bring tears to my eyes as we were not able to do anything to help her reduce the pain.

She was in the same condition for 3 months. By May she completely stopped taking food. She passed away on may 1st 2020. 

As I saw my mother from the diagnosis to first chemo session to first hair loss to bedridden condition I understood that cancer is a condition that stays for a very long time unlike other diseases and will have a very colossal impact on mental health and creating a positive environment around the person is the most important part in the treatment. As caregivers, we have to give them the assurance that everything will be alright. We should accept the reality and live it with positivity.