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Manish Giri (Ovarian Cancer Caregiver): Patient's wishes should be fulfilled

Ovarian Cancer Diagnosis

We used to stay at Shimla where we had the best of food, atmosphere and weather. Our life was going pretty amazingly. My wife had Pain during her regular menstruation cycles, but she was perfectly fine otherwise. In October 2015, when I was on tour in Delhi, she called me and said that she had excessive Pain. Since I was out of town, some of my colleagues and cousins took her for an Ultrasound the next day, and we got to know that there was a massive cyst in her stomach. I was not very confident about Shimla, so I called her to Delhi, and we moved to Ahmedabad as her parents live there.

When the investigation started, we found that it was a malignant cyst and she was diagnosed with stage 4 Ovarian Cancer. She was 45 then, and she was so fit that she hadn't taken any medication other than the polio vaccines that we get in our childhood till the Ovarian Cancer diagnosis. She used to do Yoga and was a very good homemaker. She managed everything very beautifully. Every reason we read behind cancer was not applicable in her case, and that was very shocking news for us, but we went ahead because you had to accept the reality.

Ovarian Cancer Treatment

We had surgery, and the doctor was very confident about the Surgery. He also said that she had to undergo one round of Chemotherapy for six months, and then she would be fine.

The Surgery went perfectly. She was not aware then that she had cancer; the wound was so deep, and we didn't want her to break down. The doctor was so helpful that he said he would disclose this news to her when she would be ready to hear it. We all had to hide it and act in front of her like she was fine.

After the surgery, the doctor disclosed the news, and it was a very emotional moment, but we were there to support her. It was already 10-15 days that we came to know about this news, so we all had already been through the phase, but she was entering that phase, and we supported her in every way we could.

We started her Chemotherapy as even though her PET scan was normal, the senior oncologist advised that we go for one round of Chemotherapy because her age was just 45 then. We took the second and third opinions, and all the doctors said the same thing, so we decided to go for Chemotherapy. She had side effects like hair loss, but we supported her, and through her strong willpower, she came through bravely.

The Chemotherapy went on till March 2016, and then she was perfectly fine and ready to go back to Shimla. We went to Shimla in March, and we resumed our happy lives. As she was a teacher, she just took rest for two months because I insisted on it and then after that, she rejoined her school.

The sudden relapse

We were getting the tests done regularly, and our life was going amazing. But life hits you hard the very moment you think it is going smoothly. Cancer can relapse anytime. Suddenly, in September 2017, when we went to Chandigarh on Raksha Bandhan, the reports were not good. We decided to go for all those routine check-ups again to the same place at Ahmedabad since we decided not to change our doctors. Taking a second opinion is okay, but we should trust our doctors.

We came to the same doctor and planned the surgery, but we took time because my wife was reluctant for allopathic treatment. Since she had already gone through the Surgery and chemotherapy, she said she wanted to try something like yoga, spiritual, Naturopathy or something.

We tried other treatments for one month at Ahmedabad, but those were not beneficial because cancer has its effects. The reports started becoming worse, and then I put my foot down and told her that we had to go for the Surgery. It wasn't easy to convince her, but in the end, she agreed to it.

We went for a small Surgery in Mumbai to check whether it was really cancer or not. We got the tests done, and the doctor had the same opinion that we go for Surgery. We then planned for a Hipec Surgery. We decided to undergo Surgery in Ahmedabad itself because we had a lot of relatives there.

The Surgery started, but unfortunately, the Ovarian Cancer had spread a lot, and due to it, the doctors had to take an instant decision of not going through with the Hipec Surgery because it would have been more disastrous to her. The doctors started scrapping everywhere where they could find cancer, and it was a 13-hour long Surgery.

She was in ICU for two days, and her recovery was excellent. The doctor suggested a chemo port so that she could be confident in taking chemotherapies. Later, the Chemotherapy got started, and it went for almost a year. She became very comfortable with that routine.

Meanwhile, my elder daughter was in her final year, and my younger daughter was giving her 10th board, so I had to go back to Shimla for her exams. As it was very difficult for me to travel to Shimla again and again because the treatment was very long, I decided to shift my family to Ahmedabad.

She again became fine, and her healthy life started again. She then made me promise that if the cancer reoccurs again, no matter if it is after ten years or after six months, I would not let her go for allopathic treatment. And I had to promise her because I had seen her suffering for the past three and a half years.

The game of life

Life seems to give us more surprises when we think everything is going well. In November 2019, she again felt a lump in her stomach. We got it confirmed that it was Ovarian Cancer relapse itself. I asked my wife what we had to do, but she reminded me of our promise to not go for allopathic treatment. She used to tell me that destiny is there, God has written the number of days in our lives, and we cannot do much with it. I could not argue with her on that point, and we left it on destiny. The third time, we accepted that we were losing this battle.

We didn't tell anyone in the house because then everyone would become tense again. So it stayed only between us, and we told our children about it after two months.

We had our Silver Jubilee Marriage Anniversary in December. We wanted to celebrate that because I also felt that it could become one of the last functions that she would be able to attend. We recreated our marriage moments and celebrated with our family and relatives.

Her health slowly started deteriorating in February 2020. She started losing weight. She was an excellent homemaker, so she loved organizing everything in the right manner. The servants were not coming during the lockdown, and she started doing more work, which affected her health.

The death of Irfan Khan and Rishi Kapoor affected her a lot. She said that Rishi Kapoor and Irfan Khan had the best doctors and treatment, they went to the US and UK, but they still could not survive. So I should leave her on her own because it's all about destiny. I told her that we could start a palliative treatment at home, and she got ready for it. We arranged palliative care treatment at home, which went on for 2-3 months and then she felt we should stop that too because it was very painful. The treatment also wasn't working well for her.

The end that no one wanted

She was thinking of our daughters and wanted them to get settled and married. She had it in her mind that she does not have much time, so she started doing a lot of planning. She used to call our daughters every day and tell them what all jewelry she had. She used to gather other ladies in the family to make a list and plan everything. We used to ask her why she was doing all these and that she would be fine again, but in the back of her mind, she knew that the end was coming.

Still, we were fighting with a smiling face and enjoying ourselves because we wanted her to be comfortable with whatever journey is left. She wanted to live comfortably in her last days. Everyone needs a graceful release. She used to say that she wanted to go because she was suffering. She was so fit; she never ate any junk food, used to do regular Yoga and walk and had a very disciplined life overall.

In the end, she used to vomit even after drinking water. She used to say that she wants to go gracefully. In the last ten days, she stopped me from doing pooja and prayers. She asked me not to do anything because then it would be difficult for her to go

In the last 3-4 days, she told me that the nurse will need to come only for 3-4 days more and when I was making a payment to someone for her treatment, she said that it was the last payment I was making; she knew what was coming next. We didn't accept that because it was so difficult to accept such things for your loved ones. She used to make a menu for our breakfast, lunch and dinner. She made a menu on Monday evening till Tuesday night, but then her health started deteriorating, and we realized that she did not have much time left.

Ten people were surrounding her bed, and she was looking into everyone's eyes, but she did not recognize anyone. It was a blank look; she was turning around and crying and fighting with everyone, irrespective of who it was. We felt that someone came to take her to the other world, but she didn't want to go and fought with them because she still wanted to be here with us. In the end, I ran to the temple, took the scissor and cut all the pooja things that were there on her body because I wanted her to be released as we could not see all that. My close relatives asked my daughters and me to move out of the room because she would not go anywhere if she sees us, so we went outside. Then, within half an hour, she moved for her heavenly abode. We were called into the room in the last 2-3 minutes because everyone knew that she was taking her last breath.

We were prepared for the inevitable for the last six months, but that didn't make it any easier when it happened. We still feel that the doorbell will ring, and she will come back from a holiday, or she would call us from her room to help her. I believe every couple should have an end-of-life conversation. Now, I don't have any Stress about what I have to do because she has told me everything; I know what her wishes were and what she wanted. There is always a gap in life that no one can fill but being courageous and smiling is the only option we have.

Parting Message

Don't panic and stay strong. Believe in destiny. Trust your doctors. Support each other, and do not let the patient feel guilty for the care the caregiver is doing. Cancer is still a taboo in India; we should treat cancer as a normal disease. Nobody has an answer for why cancer happens to anyone, so don't ask 'why me.' The doctor should be very clear about all the things, and the patient should always have faith in his/her doctor. Never Google for cancer because everyone has a different experience with it.

Caregivers also suffer a lot physically, mentally, emotionally and financially. It is a difficult journey for them too, but every caregiver should try to be courageous and accept things as they are. They should try to fulfill every wish of the patient.