Journey As A Single Caregiver To My Mother with Cancer

Submitted by PatientsEngage on 25 March 2018

Image: Suparna, caregiver of mother with cancer in a scenic setting

Suparna Mazumder has been a single caregiver for her mother who was diagnosed with metaplastic carcinoma of the ducts. She recounts her journey – as an organizer of treatment, as a physical and mental care giver, as the only earning member of the family, as a single parent with a child

The Diagnosis

It all started in January 2004. 17th January, 11pm. While I was reading the newspaper, my domestic help told me that my mother had been feeling her breasts in the afternoon and had said may be she could feel something. I woke up my mother, asked her what it was, made her sit up and feel her right breast. I didn’t like what I felt. I felt a small lump, which was hard, not stationary and painless.

Next morning I spoke to my colleague’s surgeon husband. He came to see her in the evening. After examination he told me in confidence that he feared the worst. FNAC test two days later proved him correct. Breaking the news to my parents was the toughest job. I had to sit with my parents together and individually to counsel them. I had to hide my mental state from them.

On 23rd Jan I consulted an onco surgeon. After examination he said the prognosis was good because:

she was post menopausal
size of tumour was quite small
tumour was not fixed.

The Treatment

On the 24th of January she was admitted to the hospital. She underwent radical mastectomy on the 25th. The doctor said he found 92 nodules. The sight of my mother’s breast on the petri dish still bothers me. The tumour was small but grayish. As per the doctor’s advice I sent the samples to Lal’s Path Lab in Delhi.

After her discharge I had to do the dressing myself. I had to harden myself to see her wound. I had to prepare her to see herself without her right breast. Its very difficult for a woman whatever be her age.

She was diagnosed with metaplastic carcinoma of the ducts, stage 1 but with ER PR negative.

Then started my ordeal regarding her treatment in Kolkata. One day the doctor would say she did not need any treatment, the next day he would call up and say she needed chemo, and the following day he would say she needed only radiation. That is when I decided to take her to Mumbai. My mother had prior to this both her hips replaced and used to walk with a crutch. But she was a gutsy lady. I took her by train as I could not afford to take her by flight. I had to leave my crying child back home as I felt I could not deal with both my mother and son on that trip. My relatives in Mumbai supported us a lot. I consulted Dr Deshpande, Breast Cancer Specialist . He said the operation was totally successful, she didn’t need any further treatment and that we should all forget about the condition for about 5 yrs at least.

After coming back to Kolkata she was on regular checkups and totally hale and hearty.

The Resurgence

April 2005: I thought of sending a medical report to Dr Deshpande since it was a year since our visit to him. I can't say why but I thought of getting a lung Xray done. They found a very, very small haze in her right lungs. In fact, they were not even very sure. The oncologist said not to worry as it was a change of seasons. He gave a course of antibiotics. After the course was over the Xray report was the same. Then we got a CT scan with dye done. Two very small spots were found- one was as if a pen was moved twice and the other was a speck. They were so small that it was not possible to do any test to figure out what they were. But since they were not there earlier, doctors suspected metastasis and suggested chemo. We decided to go ahead with chemo as my mother wanted to live for my son. I had to do another round of counselling. I had to talk to my mother that she would lose her long curly hair but then it was temporary. I had to get her chemo done in government hospitals in Kolkata. My ordeal is beyond description.

My caregiving experience

I had to take care of my mother as I was unable to keep any help for financial reasons. For days and months I had to work 24 hrs a day. I even had to give her neopogen injection when her WBC went down drastically as I did not get anybody to give the injection during Puja time. It was very difficult dealing with my son. He would see his darling granny all right before going to the hospital and falling sick after coming back. He would shout at me saying I was a bad mother. He was 8 years old.

My mother underwent 2 rounds of level 1 chemo and 3 rounds of level 2 chemo. Unfortunately, the spots did not go away as was expected. I also had to deal with the psychological effect of cancer on my mother.

It was very difficult for my mother to accept that she had cancer. After cancer was detected she said that she did not mind leaving this world but she was scared about the sufferings the disease implied.
After her chemo she had become very hyper and angry. She would cry always. She would accuse me - specially that I was not taking proper care of her, that I was not doing enough. She would find faults with everybody and everything.

Herbal treatment

April 2005. By this time I got to know of a person who prescribes herbs and stuff and was getting very good results for cancer also. I took my mother there and consulted her. They don’t prescribe any medicines. They prescribe the herbs and suggest how to prepare and give to the patient. It was a very tough job but I decided to take the challenge. There was dietary restriction also. Initially they gave herbs for detoxification from chemo. In June she developed Hepatitis B. She appeared to recover very fast from hepatitis inspite of being immuno-suppressed to the surprise of the doctors. She started to keep well. 2005 was the best year since her detection.

She enjoyed my son’s thread ceremony in May 2006. Unfortunately the person who was prescribing the ayurvedic medicines herself fell ill and there was some problem with her treatment. My mother also had rheumatoid arthritis. Because of neopogen injections her pains and stiffness increased which made movements very difficult; also she was becoming weak as if her life force was getting drained.

On 16th October 2006, early morning she fell sick. I realized she had suffered a cerebral. I admitted her to the hospital. She passed away on 19th early morning at 12.50 am, just before Diwali.

My Experience as a Caregiver to my mother:

Being a caregiver was really tough and traumatic. First I had to come to terms with the fact that she had cancer. Then I had to talk to my parents about everything. I would spend sleepless nights prior to any test. I would read to find out what to expect and how best to take care of her. I had to worry about the financial part and had to think about organizing the treatment. It was tough both physically and mentally.

My whole life revolved around my mother and her treatment. I did not even watch TV let alone go out socially. I missed enjoying my son’s growing up; I could not give him time. He too suffered, not understanding what was happening. I missed having somebody by my side for discussing about everything and taking decision. At each point I would feel - am I doing right? I had nobody to unburden myself to; keeping everything bottled up within me was extremely tough. I cared for my mother as I would for my child: it was very difficult to accept her passing away. Even now I feel that I did not do enough, that I failed her. If I had the resources I would have taken care of her in a better way. I could not fulfill her wish of visiting Puri before she left us. This still bothers me. I have these thoughts even though she told me that I have done going beyond my capacity. Also during that period because of excessive stress tension hard work sleeplessness I developed physical issues. Within my severe constraints I tried my best.