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K. V.Smitha (Glioblastoma Caregiver)

K. V.Smitha (Glioblastoma Caregiver)

How it all began

My journey started in 2018. Our family consists of five members. My dad was diagnosed with cancer in September 2018. I had just left for my MBA, and my sisters were married. We found out that dad had a grade four glioblastoma multiforme, a form of brain cancer. So he had to have brain surgery immediately. I could not be there because I had a very stressful schedule, but I knew something was off. He got the tumour removed. So the doctor said that we would get the diagnosis after a week. The report said it was GBM multiforme grade four. We asked doctors about it. Sometimes the doctors can be a little blunt. They told us to check Google. So we checked on Google and discovered that it was a terminal form of cancer. The doctor gave us a normal curve graph, and 14 months is the median. It is how long people will survive.

Early symptoms and diagnosis

GBM four is not stagewise cancer but graded cancer. It is either present as a grade-four tumour or is not there. He forgot that he had coffee after just having it. When my parents attended a wedding, my mother found him sleeping in a chair. Mom wondered why he was acting like this. She called up his colleagues to find out if something had happened. The major symptom was that even though he was talking and looking at a person but unable to see the person. So, they went to the doctor. After an MRI, they found a tumour. 

How I took the news 

We didn't have any cancer in our family. I have heard about it only in the extended family. It was not good news, and we were scared. "We could fight through it, or we could do this" seemed like a story quote. Initially, you can have that willpower, and you will fight it. But when it happens to you or your family member, the entire family is on hold. Initially, my sisters and I were the only ones who knew it was terminal. We did not want to tell mom about it. After the diagnosis, I reached out to a friend whose mother had a similar form of cancer. She's still alive and is doing great, and I'm very happy for him. He gave me all the resources. So thankfully, I had people to whom I could reach out.

Treatments underwent and side effects 

There were 45 days of radiation after the surgery and diagnosis. My mom and my uncle went with him. After this, chemo started. Chemo was like a standard thing for which my sisters would fly down from Bombay and Bangalore every month. I was not there with him when he needed me. But my sister and my mom stepped up. Although the tumour was stable and wasn't growing, the chemo was not helping. My dad began to forget things even more. When the radiation tries to destroy those cancer cells, it also eliminates the good cells. So, he ended up forgetting a lot of things. He did not know how to brush his teeth anymore. He would keep repeating the same thing over and over again. So his condition worsened. So, they decided to increase the dosage of the chemo. After this, he became bedridden. He could not go to the washroom.

We had to get a nurse to help with everything. My mom was alone taking care of him. She had a nurse, but dad had become a child. He was on chemo until then. But my older sister and my middle sister decided to do something apart from chemo to improve his quality of life. We did a lot of research in the last two years. By December, the tumour had spread to his spine as well. So the doctor tried one last thing: an intense form of chemo. It's called Avastin. He could not walk or talk and had seizures, and we could see life leave him. So we decided to spend whatever time we have with him instead of putting him through treatments. So after debating with the family, we all decided to stop the treatment now. We spent time talking to dad. He tried smiling. He loved old Hindi music, so we played that for him. There were nights when my mom had to stay up for the entire night and clean him. But the days we tried to speak to him and to make him comfortable. I think he passed away on April 2nd. It was a long 19-month journey. But we already knew what was going to happen. I'm glad that we as a family did not give up. 

Coping up emotionally

I didn't handle it well because I wanted to help like my sisters. I wanted to be there. I knew it wasn't going to be easy for them. And I remember I spent nights crying in the hostel room. So, I reached for help and talked to a therapist. I told him about what I was going through. She suggested involving the person who is going through this. It's crucial to involve the person, not only to cry with them but to laugh with them. So, I made sure I spoke to dad every day.

My mother has probably outdone everyone in terms of the care she has given to my dad. I cannot imagine someone who has been handled so much alone without complaining for a second. And my mom is someone who has extreme faith. She wanted her husband to have a good quality of life. My mom knew that dad wanted to live a life of dignity. So she made sure that the nurse was also treating him properly. She still has prayers with her. 

How we remember his final days

My dad used to sing a lot of Hindi songs. I have all those recordings. But human memory and the brain is an amazing thing. When you love something now, even in the worst times, you only remember the good stuff. Like music was for him, we used to play the song, and he used to harm along with it and remember all those words. But towards the end, we were like he let the person enjoy what he likes to do.

Some life lessons

My biggest lesson is that it is essential to try. After we lost him, I felt very defeated. But we tried everything. So we have to try whatever the end goal may be. The second thing was that even though I was not the immediate caregiver, I learned that it is imperative to support the caregivers. We have to ensure that we are not only giving willpower and courage to the patient but also the caregiver. I think that journey made us a lot stronger as a unit. My dad couldn't do anything he wanted to do. He had a car, and he tried to get a bigger car. He could not travel to see the world. So, I learned that I could not put off living to a later point in time. 

Our support system

My dad's best friend was an angel. His friend completed all the paperwork. He showed us resources which we could not find anywhere else. The doctors were there too. I admit that doctors were too blunt with us sometimes, but I learnt to forgive them. We had a sound support system. 

Message to cancer patients and caregivers 

My message would be to fight the fight. Cancer survival rates are not just statistics. Some people are the exception in this journey, and there will be miracles. But to be that person, you will have to fight and try because there is no other way.

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