17th March to today, mom’s condition is worsening so rapidly, I didn’t know it’s possible for any disease to aggravate so quickly. We have no time at all. All her body functions and organs are in perfect condition but her lungs are giving up. Just giving up.
Before Facebook, it was not so in your face evident that while your world is crumbling and crashing, rest of the world goes by just fine without batting an eyelid. Our sorrows are our alone.
After my morning update regarding mom’s condition, people got very worried. Some called and messaged in panic only to find out that since afternoon she is rather better and felt like their worries are wasted. Annoyed at me they asked why I posted worrying information if she is not that bad. Well people, allow me then to explain the situation in details.
Yesterday I saw her latest CT Scan report which shows 3 out of 4 portions of her lung, the left lower and upper lobe and the right lower lobe are collapsed. On 17th March only left lower lobe was collapsed, means in less than one month the disease has progressed so rapidly. On 17th March CT scan, the lymph nodes were of 0.5 mm less than a month they are 12 mm. In addition there is enlargement of heart.
People ask what are the doctor saying? Its the most important question my mother also asks me. Ironically, her attending doctor has stopped talking to us last two days. Because he keeps saying there is nothing to be done, chemo is not possible, take her home and spend time with her. But we are not ready to go. So now he is giving us cold shoulders pretending we don’t exist. Last whole week the only communication that happened between us and hospital is about discharging the patient. Attending doctor enters the room and tells us “I am discharging her, have you arranged for BIPAP and Oxygen at home?” We say, “no we haven’t we need more time, please don’t discharge.” He storms out in anger. And then nothing. The whole day goes by without any other treatment except supportive care like nebulizer, tablets and mouthwash. I am not even sure if the new CT scan has been seen by the attending doctor at least he didn’t discuss anything with the family. Nobody from respiratory team who ordered the CT have come to see the report or patient or to talk to us.
We feel like a liability here and all they want is to get rid of us.
I am not complaining. This hospital and staff have been immensely nice and kind to us. But there is an immense pressure from the management to get rid of patients who only need palliative care because there is very little to bill us for. Every patient, every room, every bed is just cold number for the hospital management. One patient occupying a bed for mere palliative care means that they lose out on new patients to whom they could bill for a plethora of new tests, scans, procedures etc. There is a flowchart somewhere that keeps an eye on the number of patients and the bottom line. Health care is all about how long can you keep billing them. They don’t want to keep you to merely hold your hands when you die. So they tell you to take the patient home and “spend quality time”
My mother is an alert, intuitive, high functioning, complex thinking patient. The doctor may say she has weeks to months but she is far away from dying. She is like, “So it’s a cancer, there are treatments for it, I would get chemo and get better. Simple as that.” Mother has immense faith in medical science and respect for doctors, she puts them up on a pedestal. Two days after she was first admitted, on 19th March she told me, “If I die, donate my organs.” From organ donation to allow clinical trials on her my mother is always keen on contributing to medical science.
Just the other day she was writing about her ICU experience and wrote that doctors work tirelessly to save people’s life. “A cancer doctor never gives up,” she said one day. It is a great irony that her attending doctor has completely given up.
When she realized this, she said, “Take me to a cancer research sort of place or a dedicated cancer hospital, let them do research on me, I am ready for clinical trials too. “Ghar jake kya karna hai? Bhajan kirtan?” she told the doctor when he came to talk about discharging. The doctor was flabbergasted, didn’t know what to say.
We have finally succumbed to the pressure tactics and asked for a discharge from this hospital and going tomorrow to a new hospital, one that is dedicated cancer hospital. Maybe a new hospital would bring a new approach. The consulting Oncologist in the new hospital told me that whether to give chemo or not is a personal perception of each doctor and it may differ. I am hoping the new doctor would be able to look beyond mom’s physical limitations like obesity, diabetes, respiratory trouble and focus on her mental strength. Her mental strength, her positive thinking, her love for life, her immense faith in medical science are enough to qualify her for a chemo and to survive the chemo side effects.
A friend came to meet us today and gave us a lot of positive energy. She spoke about how positive thinking can make miracles happen and it really helped. At least mother and I are both feeling motivated. She became active toward the evening, sat up for over half an hour. Stayed off the BIPAP machine for over an hour and her Oxygen saturation and heart rate were very good all the time.
Mother’s friends from Uttarayan music group have given us the strength of chanting the Soka Gakkai Buddhist chant Nam-myoho-renge-kyo. Whenever we get time, I play it on YouTube and we all chant. It really does feel great even for an atheist like me.
I hope tomorrow, the Bengali new year brings new hope in our lives.