George Francis (Metastatic Adenoid Cystic Carcinoma): Keep Fighting with Zeal

How gallbladder cancer began

My caregiver experience started back in 2014, when my mother fell ill. She started getting tired and experienced unexplained weight loss. We thought of getting it checked to be safe since my mother had also suffered a similar issue with gallstones. We consulted our family doctor and got all the necessary tests done. At the end of it, the doctor advised consulting a bigger hospital as her situation looked a bit more complicated.

We consulted another familial doctor and conducted a couple more tests. That is when we found out there was a tumor in her stomach. A CT scan later, we found out she had stage four gallbladder cancer. It had spread to her lymph nodes too. Although we were distraught, we made a quick decision to startchemotherapy. After eight cycles ofchemotherapy, the tests revealed that her cancer had significantly reduced. The doctor suggested getting the tumor operated.

After a year-long fight against gallbladder cancer, my mother was finally free from it. She took a month to recover at the hospital, but it was almost like nothing had ever happened to her when she returned home. She went on regular morning walks and controlled her diet. As a precaution, we would take her for a periodic checkup every three months. The doctor then recommended that we could have a regular checkup every six months since her tests were utterly routine. While this sounded like positive news, the outcomes were not.

The battle with gallbladder cancer was far from over

In 2018, cancer spread to her lymph nodes, but this time due to a delay in checkup, its size was consequential. All the doctors we consulted suggested avoiding Chemotherapy as she had already gone through too many sessions before, which could further deteriorate her health. We consulted another doctor, and he prescribed the same treatment. So once again, she went through 6 more sessions of Chemotherapy. The results were positive, and she was slowly recovering too. But six months after the treatment, she had a Pain in her lower back. After a CT scan, it was found that not only had cancer resurfaced, but she also developed Chronic Kidney Disease (CKD) because of the excessive Chemotherapy sessions.

This time, to avoid any further complications with her kidneys, we consulted with a nephrologist before taking up each Chemotherapy cycle. The good part about this was that cancer remained stagnant, but after two months of treatment, she again felt Pain in her nodes.

At this point, we just wanted to eliminate her Pain. Her doctor recommended trying out Radiotherapy. She went through 25 sessions of Radiotherapy and came out completely fine. She maintained an optimistic attitude through it all and was always comfortable with all the treatments. She was energetic and even carried on with morning walks and exercises.

A few months later, she went through another round of Radiotherapy. The cancer was spreading to chest nodes, and she was suffering from persistent fevers. This session helped her to an extent, but when we went for a checkup a few weeks later, scans showed that she had developed fluid in both her lungs. The doctor suctioned the juice out of her lungs and prescribed her medicines for another month. The Pain returned in two months. Ultimately, we decided on Immunotherapy. We sent her DNA Gene test reports to the US. They determined that the 'tumor mutational burden' was at an intermediate level.

I contacted many hospitals, but they had a different opinion on Immunotherapy since it was intermediate. Some hospitals advised going for the second-best treatment, but that would involve risking both her kidneys while the others suggested trying Chemotherapy once again. My mom, at this point, was already on morphine for a year. So after a lot of consideration, we decided to go for Immunotherapy.

When we gave her the first shot of Immunotherapy, her Pain was relieved, and the tumor suppressed within a week. Fifteen days later, he got another round of shots. But this time, he, unfortunately, contracted pneumonia. But due to high doses of medicines with fentanyl patches and morphine, she developed Parkinson's disease.

My mother was now suffering from gallbladder cancer, chronic kidney disease, and Parkinson's disease. Additionally, she was mostly functioning on only one lung. We took her to the hospital, where she stayed for 40 days, to treat all her ailments. At some point during her stay in the hospital, she fell off the bed and was injured. She had to start using a wheelchair as she could not walk around anymore due to Parkinson's disease. The doctors claimed that it was a miracle, but my mom recovered soon. They did many more tests on her, and all of them came out normal. Within a few days, she was discharged and back home. Of course, she was bedridden and had to use the wheelchair to move around, but she felt better.

A month later, she complained about her stomach feeling very tight and had difficulty moving. So we took her to the hospital. Her Ultrasound reports revealed that sepsis had developed in the stomach area and infected her lungs. We got her admitted by evening, but her condition worsened. Her blood pressure, sugar level, and saturation level all dropped overnight, so she was ruhed to ICU in the morning. The doctor said that her liver was damaged because of years of excessive medicines and the chances of survival looked bleak.

At the time, we had a lot of palliative counseling about this situation. "What would you do in this situation? Would you like to opt for the ventilator or not? I had decided that we would not be using the ventilator. In her last few days, we looked for her comfort. We wanted to keep her Pain low and be prepared to let go when it was time to do so.

My thoughts about the journey

The journey in itself was five and a half years, but during that time, we always made her feel like it was expected, and everything would end soon. Throughout her treatments, we convinced her that she would be fine, so she always maintained that optimistic outlook. She struggled, but never lost her cheery smile and personality. Maintaining this attitude was crucial to avoid falling into a depressive episode.

This journey made me realize many things. Firstly, in terms of cost, the treatment was very financially draining. But again, it made me wonder how poor people could afford to pay for such expensive treatments like Immunotherapy. We were paying 7-8 lakh every month for my mother's treatment.

I saw how backward palliative care is in government hospitals. Whenever I would take my mother to a government hospital, she would receive treatment while sitting in a chair or even on the floor. I realized that most government hospitals do not know how to treat a patient who has multiple complications simultaneously. The quality of treatment in government hospitals is still very primitive. Since the doctors have over 100 patients to treat every day, it is clear that they are overburdened, which is why a patient and caregiver need to choose a doctor and hospital very carefully. For too complicated cases, like my mother's, it is better to choose a private hospital.

For some patients, Naturopathy may work, but for others, allopathy is the only choice. One standard treatment does not work for every single cancer patient. But the decisions should be taken diligently, as one wrong move could cost you everything.

Mental healthwise, this journey has affected my mental health as a caregiver. My personal life was involved too, and I even lost my job because I would have four appointments a week to attend with my mother. People in society don't understand this, not unless they know what the person is going through. We realized that in a joint family, she would have someone to take care of her. So we invited relatives from our hometown every once in a while. Being around people helped her a lot.

Parting message

To all the patients and caregivers, I have only one piece of advice. Always keep your hopes high; it is the only thing you can hold on to. Having a positive frame of mind helped my mom to deal with this disease without any mental trauma. Yes, she was in pain, but she still smiled through it all, hoping that she would come out of it one day. Also, feel free to cry when you need to; it helps relieve distress.

Another practical advice I'd like to give is to be conscious of what you are doing. Do not panic during the treatment but do maintain a certain level of awareness. As a caregiver, you need to be proactive. Never have the 'let's wait until it happens to see what we can do.' Be decisive of what and how you want to go about the treatment.

Often caregivers, and even patients, undermine their need to socialize and try staying isolated. You will have no one but your close family and friends to keep you smiling in these trying times. It would help if you tried to be in touch with people who have similar experiences as you. They can provide more comfort than any other person can.