3rd April 2017

Cancer. Not a disease but a culture. A major story twist. The deadly misfortune has been part of the most tragic films and literature. Mostly it would be the male protagonist, he falls sick and doctors tell him, “You have last stage Cancer, only few days of your life are left” and then an dramatic scene follows. “Ab inhe dawa ki nahi dua ki zaroorat hai (She needs prayers now not medicine)” is a much clichéd dialogue from hindi films of yesteryears.

In real life however, among friends and family such misfortune was rarely heard. With advancement in medical science Cancer became something not to be scared of but survive. Stories of Cancer survivors goes viral on social media these days. Celebrity Cancer survivors like Lisa Ray, Yuvraj Singh make headlines and give TED talks.

Lie. Everything is a lie. This mammoth misfortune has befallen upon me and my family. On 17th March, mother walked out of home for routine checkup. She was having cough, her X-ray reports showed a lot of pleural effusion. I Googled pleural effusion. Found out what is it and what should be done to bring immediate relief. I told mom, “Ma let’s go to the hospital, pleural effusion isn’t good, they will have to take out the fluid from your lungs.”

Today, 3rd April 2017, she is still in ICU. Faintly she tells us, “I would get better slowly. I know XYZ person, he got prostate cancer, lived for twenty years.” I leave her in the ICU and visit her  Oncologist who tells me there is almost no hope. Everything seems to go against her. They were very hopeful last week when they inserted a chest tube to drain out fluid. Over 1500 ml of fluid was drained. They were planning a ‘pleurodesis’, a surgical process done once all fluids are drained out to prevent further accumulation of fluids in lungs. But today we were told Pleurodesis won’t be possible as there are more fluids which are not coming out.

Now they say there is one last hope. A particular oral medication which works on certain type of cancer cells. It has a higher chances of working on Asian, female, non-smokers. If this works she may have 12-18 months. If not, it’s a matter of counting days.

Are the doctors trying to get rid of us because we are CGHS empaneled as with each day their overhead costs are increasing? Why else would the doctor tell me to start doing my homework on finding out a hospital closer to my home where she can be given palliative care or try to take her home with home nursing facility. Why can’t palliative care be given in this hospital itself? If so much of fluids are drained why Pleurodesis cannot be done, the procedure which was likely to improve her breathing so that she could prepare for Chemo? Are these doctors deliberately discouraging us to continue with the treatment here and pushing us to places like Rajiv Gandhi Cancer Institute or Dharamshila Cancer Hospital? How can I trust them when they say there are more fluids so we cannot do pluerodesis but at the same time they have removed the chest tube and shifted her to the Ward. Shouldn’t the tube still be there? The Oncologist was so positive till Saturday and today everything was negative.

My suspicion aside, she has cancer and we would lose her sooner than before, that much is settled. What I am really worried about right now is an area that’s completely dark for me. How to go from here? What does it mean when doctor say, “Patient is terminal we cannot do anything.” Terminal means how many days? Weeks? Months? Does terminal mean we have to sit around and watch the patient die? They say stage 4 means the Cancer has spread to other parts of the body. As of now mother’s other parts like liver, brain, kidney, heart are working fine. Do we have to now wait and watch how the cancer spreads to each part and causes pain and suffering to her? How does it all work after doctors give up? What is the patient and patient’s family supposed to do?

In the evening they shifted her to the ward. She looked better, was feeling better, spoke to us most normally, she heard YouTube songs and wanted to go on Facebook. She is convinced that the worst is over and she is going to get better now. She said, “After getting better I want to go to the Sarada Mission.” How can I tell this brave patient that doctors think she is terminal. It sounds insane.

5th April 5, 2017.

9.17 pm

I spent over two hours  in front of the doctors chamber without food just to be able to  meet the doctor for two minutes and ask him for a clarification on the case summary. Why they didn’t mention the fact that they tried for pleurodesis but it couldn’t be done for some medical reasons. Secondly why they didn’t mention that she has been started with a certain oral chemo tablet. After two days of chasing the doctors I finally got the updated patient summary. It mentions that pleurodesis couldn’t be done due to lolucated effusion  and the name of the tablet they are giving her is Elrotinib.

What would I do with these information? I don’t know. If two tests said there are malignant cells then there is obviously cancer in her body. No second or third or zillioneth opinion can change that fact. Everybody on Facebook and off line friends and family are so in shock  at this sudden devastation that they all believe a second opinion would miraculously change our fate. They all suggest a doctor of their liking, they all know some doctor somewhere who has given couple of years extra to some cancer patient, completely cured some and so I should go to that doctor. But science is above all. The facts in front of my eyes is that she has Cancer, even after lot of medical  advancement only treatments for Cancer are chemotherapy, radio therapy and surgery. None of which is possible for mother. She is not able to breathe on her own, one of her lungs is collapsed, so her body cannot take chemo. Her sleep apnea and obesity is adding to the problem. Her hemoglobin is low. All the Google research and alternative opinions I have done points to only one direction, that its stage 4. No second opinion can  possibly change it.

Seema’s father works with an organization providing palliative care to cancer patient. He consulted an Oncologist in Kerala whose views are concurrent with the present doctors. Seema said, that doctor gave mom 3-4 months and suggested there is nothing more than palliative care at this stage.

So many people are saying go to Rajiv Gandhi Cancer Research center, and so many others saying  don’t ever go to RGCR, it’s the worst. Whom to believe? Still I would take the patient summary  tomorrow and go to RGCR. My fear right now is this hospital would soon give up and ask her to take her home. That’s what they tell such patients. Where would we go then? How to take care of her?

6th April 2017

11.44pm

ALK gene mutation was negative. It was our last hope. Ma’s hemoglobin was very low, she is being given blood transfusion. Low hemoglobin is a side effect of chemo therapy, but it is also a symptom of cancer. How continuously I am negotiating with destiny, give me something. Give me some months.

Greatest irony of mother life is how much faith she had in doctors and medical science and how much they failed her. Today she wrote in the diary about her experience in ICU. She expressed her reverence for doctors who work hard to save lives. Two days back when her Oncologist visited the room, and I told her ma he is HOD, she folded hands and touched her forehead in a gesture thanking God for giving her such grt doctor. But in spite of being in doctors radar round the year, in spite of going through regular check ups and tests, a cancer entered her body reached stage 4 but no doctor could detect it. What utter failure. How would she feel if she finds out? We must not let her find out.

9th April 9, 2017

We told ma about her cancer day before yesterday that is on 7th. We thought it was important to tell her because she needs to know that the decision to take the chemo or not is on patient / relatives and so  she has to make an informed consent.

She was unbelievably calm. I wasn’t sure if she was in denial, did it not sink in properly. There was me, masi, riya and baba. Most of the talking was done by me and Riya. Baba was too scared to talk to her, he sat in a corner on the sofa.