I am a retired airport pilot and have been into operations through and through, which means military operations. My partner Neila and I are poles apart. I was an extrovert much outward in nature, a sportsman and military life. But she was a mother to three of my children, very orthodox and from a very humble background. She was born and brought up in Delhi but had nothing of a Delhite in her blood. She was a pure village girl and extremely kind. We were together for 35 years.
Speaking of initial symptoms, I would say that we got cheated. I started to pilot commercial flights after I retired from the Air force. However, as a commercial pilot, I had to do my medical every six months. So I decided with her consultation that she would do hers every time I do my medical checkup. Her navel used to move up and down. She did manage to get rid of the pain by seeing a Vaidaya in Jaipur. The pain had vanished, and everything was normal. That is where I got cheated. That was August 2017.
Her mother, who was around 85 years old, got bedridden. I told her to move to Jaipur and get on with her mother. The thing started again, maybe because of pain, a few diet issues, and mental stress. When she came back, she complained about navel movements. Also, I thought of the guy who corrected it last year. But as God could be a little unkinder, that person felt sick himself. And he was not in a position to rectify. When she came back in July, she could not get that fixed.
I could see a loss of physical health and loss of her appetite. But she got swamped shopping for her first grandchild. So, she did not keep a check on herself, nor did I. My daughter did tell me that something was wrong with her mother. But Neelam denied it.
She couldn’t eat. There was no appetite, but she took some fluid. She was in too much pain and was nauseous to eat. We went to a urologist. He checked on the UTI and liver function. We had to fly her back to India for a further checkup. The journey went well, and she had no pain during the trip. She ate some solid food over the last 20 days on the flight. And she also smiled and laughed at me, saying nothing had happened. It was an infection, and she would have to return to London.
They took the blood, but blood reports took time. The first diagnosis was made in the ultrasound. They saw a tumour in the ovarian area. But they had to do a vaginal scan to confirm it. Even the blood reports spoke the same thing. The primary source is the genital organ. But the secondary source is also not known.
I was fortunate to meet an onco-surgeon on the panel in the same hospital who was also from the ex-air force. He checked the biopsy. The medical oncologist was also on board. So then both these people, after seeing the biopsy, decided to go for a new adjuvant. So a new adjuvant would mean that there’s too much fog for the surgeon to go for surgery. He used the three cycles of conventional chemo to reduce the tumour. On December 5, we started our first chemo within seven days of arriving at the hospital.
Our first chemo is given with a cycle of 21 days. And paclitaxel, the platinum drug, is the standard first-cycle drug for three cycles. I was surprised that the CA dropped with the first cycle from 1700 straight to 40. It was so encouraging. And by the third one before surgery, it was at 25. So, the surgeon was convinced. After the surgery, it was diagnosed as stage three C. Surgeon removed all that, including the uterus or fallopian tubes, pelvic glands, lymph nodes, and even the appendix. We were home and ready for the successive three cycles of chemo. So we finished chemo by April 15.
There was a relapse by September. So, around September, I found the CA rising; by October, it had rapidly increased. We were cutting fine, six months plus minus a week. So the ongoing or in our programs decided we would go for platinum but extended the second one by a more potent dose. So, Lipodoxin is the drug chosen. But my onco felt that our poodle should introduce an element which is a maintenance job known as Abyssin, which probably works as a VGF. It works in terms of blocking blood flow to the cancerous tumour.
I introduced Ayurveda with the second line because she lost all her hair and went pale. She was already diabetic about two years before the diagnosis. The side effects of chemotherapy for the first time were massive. Peripheral neuropathy starts with a lot of pain. I started naturopathy for that. And also went into Ayurveda combined with Siddha. I used Giloy to control her sugar level. I started with that kadha. And I started homoeopathy. The second time was without any side effects.
Unfortunately, ovarian cancer doesn’t stay there. It travels and especially travels in the peritoneal area. Doctors suggested heated intraperitoneal chemotherapy. So the heat, the chemo drugs to about 100 to 304-degree centigrade is a surgery. It takes out if there are any visible tumours and then, through a laparoscope, pushes this heated drug inside. That kills a lot of normal cells also. That heat could damage a lot of organs. But then it wasn’t very safe. That was unfortunate. One of my neighbours, who went into this, lost her kid. So that high tech was out.
I have to push in a lot of protein. So protein was a significant dietary change. I went in for a discussion with my older daughter and the nutritionist. And if you push in fibre before you push in any of this, satiety is very important. I was 24/7 with her, and I think more than she deserves, I need to do that.
Relapse and challenges
Unfortunately, the relapse again took place after four months. We decided that we would go ahead with a platinum-sensitive kind of drug. The second line, and third line, finished in February of 2021. Again, she relapsed. Now, the oncologist has changed. But he said we would try some oral drugs because most other drugs are almost over. And he introduced a drug, ola Parabola.
Parab is a pop inhibitor. It denies the protein to cancer. It has a severe side effect issue, especially for the first month, and I was briefed about that. But anyway, at that time, none of these alternatives could work. By then, she had already lost half of her health. So alternates were not working. So in June 2021, we tried using a modified drug called Packet XL. And obviously could not give her any platinum drug because she had not finished six months. She was no more platinum sensitive.
As late as December 2020, the world saw this technology, pressurised interpreter, aerosol chemotherapy only. For a month and a half, I used equipment imported from the US. The things are all convincing; the technology is persuasive. But whether that frequency is tuned, not tuned into the equipment, whether it’s working in the body or was it too late for her, all that is a question mark. Anyway, I used it for the first month and I found things were working. The pain was excruciating in the last part.
So we started her on morphine. All organs, KFT, LFT, everything was holding parameters, patient-level, liver enzymes, everything was holding. There was nothing in the lungs, and they travelled very fast. Nothing in the lungs, nothing in the heart, everything was excellent. Nilam was diehard. She said anything on this earth, and I want to live. I said they would cut open your whole body. Again she said Let it be, but I want to live. And I can assure you that when you’re there, nothing will happen. So instead of me giving her care, she was providing care to me.
We were ready for Pipe back on September 1. But pre Pipe and the CT scan spoke terribly about the intestine condition, the bloating. There’s just a 10% chance of survival. The analysis says that there is no benefit. Only the surgeon is saying that the quality of life will improve. It was supposed to be distant for 3 hours. It just lasted 40 minutes. When he opened up, it was all bloated. But unfortunately, she cannot now recover. She has to be on a ventilator. Her organs failed kind of, so she went into ICU, spent seven or eight days, believe me, she was on a ventilator, moved to tracheostomy everything. She lost her voice, yes, but everything was going very well.
We started a liquid diet on September 11. Unfortunately, I think the extra fluid was put in little more than what she could take. She threw up with vomit. She got aspiration pneumonia on September 12. And that was the last because the moment you get into aspiration pneumonia, your lungs are gone. So now, the chance of getting out of the ventilator was gone. We used to communicate by writing. So on the 18th, I erected the ICU at home. The moment when she came to the room where she used to sleep, she started smiling. Everything was excellent for those five, six days. But as destiny couldn’t take it, she went into sepsis. On September 23, she said goodbye.
Message to cancer patients and caregivers
Never lose your hope. It’s effortless to say all that but very difficult for the person going through it. Understand that anything you say as a caregiver will multiply in its effect. So be very cautious about what you think in front of the patient, the society, or the family members. Always go with their choices. Their choices become most important. For example, many people have told me why I don’t share this with my friends. It’ll lighten up. But she said no to it. I respected that.
She said I’ll not join this cancer NCR group. She asked me to be her face. Let their wish be your wish. Don’t go by anybody else’s life stories. Listen to them, but process them. Don’t get a myth that there are no indications. There have probably been enough symptoms for people who are into it. Even if you are a survivor, maintaining your ultrasound is much simpler nowadays. So don’t sit tight being a survivor. Just do your ultrasound.