A father-daughter duo recalls their personal trauma over the tragedy of losing their closest person to terminal cancer and struggling to help her cope with the pain. A case for respecting end of life choices of a patient and access to Palliative Care.
THE HUSBAND SPEAKS... Jayanta Sinha
She is my wife, my child’s mother – the most beloved one – who passed away at the age of 49 years after a painful journey of seven long months.
Smriti Kana was always a good student and aspired to be a doctor to help the poor and the needy. But her conservative parents did not extend to her much freedom and she was even prevented from taking up the job of a nurse in the Indian Army. We got married when she was 26. We quarrelled with each other, blamed each other on different occasions but never even imagined parting ways. She was my friend. We did everything after discussing, even for minor issues.
My wife wanted to fulfil her own dreams through her daughter. Ushashi, our daughter, turned out to be a well brought up child and my wife took it upon herself to look after her education. She even left her job for that. We were a happy family, which, of course, was not destined to last. Smriti Kana was diagnosed with Cancer – Cholangiocarcinoma (Bile Duct Cancer), probably the most deadly one.
Diagnosis of Cancer
On 17th July, 2013, she suffered a severe pain in the right upper abdomen and was taken to a general physician that very day. In accordance with his advice USG was done instantly and it was reported that everything was quite normal except for a stone in the Gallbladder. It was also reported that the terminal CBD could not be delineated. Not being satisfied with the treatment of this doctor, she was taken to a famous surgeon in Kolkata within a day or two and was put under his treatment. Under his advice, another USG was done on 24th August 2013 but nothing new was found. Then the doctor advised for the operation of Gallbladder stone. Prior to the operation, the surgeon advised for MRCP. It was done on 31st August, 2013. The report revealed the actual diagnosis and the doctor decided to admit her under him at a Kolkata hospital on 2nd September, 2013.
Chronology of treatment
This is when the actual trial began for us. The treatment went like this:
- Two months for an essential CT Scan to be done, despite repeated requests. Bilirubin was quite normal at the time.
- The CT Scan was finally done on 17th September, 2013 and the disease was confirmed once again.
- The FNAC (Fine Needle Aspiration Cytology) was done on 17th September 2013 and I collected the report on 23.9.2013.
- She was then taken to Tata Memorial Hospital (TMH) in Mumbai on 24.9.2013.
- After admission, both PTBD (Percutaneous Transhepatic Biliary Drainage) as well as stenting were carried out to reduce the bilirubin which had shot upto 7.8.
- Chemotherapy was not started as they said it is unsafe to do so unless the bilirubin came down to two or less.
- Smriti Kana was discharged from TMH and we returned home on 12th October 2013. They advised us to go back when the bilirubin came down to 2 or less. But she became so feeble that I could not take her to the hospital in Mumbai again.
- Instead, she was taken to Tata Medical Centre (TMC), Kolkata for further treatment. She was admitted to the hospital and Gemcitiaben as well as Cisplatin were administered as soon as the bilirubin came down to 1.8. But she could not tolerate the same.
- High fever, breathlessness started. She began to shiver frighteningly. I arranged Nebulizer, Oxygen, ambulance etc. within 30 minutes and she was taken to TMC. She was admitted instantly and treatment started. It is very painful that she was then attacked by Klebsiella. However, she was discharged after 16 days and taken home. Once again the same chemo was administered after two months but failed. Then she was referred to Palliative Care on 16th December 2013.
Palliative Care in Nursing Home
I would go to TMC traversing a horrible journey of 2 hours by road each week for the treatment under Palliative Care as there was no provision of admission of a patient under Palliative Care at TMC. It was a horrible experience that we had to wait for five to six hours everytime to meet the doctor. Naturally it was not possible after a month and I had to depend on local nursing homes which did not even know the term Palliative Care. But I had to still go there for Tapping ascitice, administering Albumin etc by admitting her to the ICCU.
The Last Few Days
As far as possible I would take care of her at home. She did not suffer much from pain as Neurolisis was administered by Dr. Somenath Bagchi. I would feed her a little frequently. It would start from early in the morning. I had to bathe her , take care of her breathlessness, and handle pain management etc. all on my own as there was no one in my family except my daughter. She would hug her mother and her caresses would help alleviate her mother’s agonies. We would talk to her frequently. But she would feel lonely in the nursing home.
Smriti Kana spent the last few days in the ICCU of a nursing home. When she was gasping they started Dopamine, Nor-Ad, Plasma, Albumin, Ventilation etc. She made repeated requests and even wept to return home. But she was not discharged. Which is why there was no one by her side when she breathed her last on 28 Feb 2014 at mid-night in the nursing home.
In Gratitude
It was also painful to find none of our relatives by our side at that dark hour. They could only accuse me for not trying out alternative medicines, which I was strictly forbidden to try out by the doctors. But my friends were all there with me then and I shall remain eternally grateful to them for that.
I shall also remain grateful to Dr. M.R.Rajagopal , the Chairman of Pallium India Organisation. Dr. Somnath Bagchi gave me Dr Rajagopal’s e-mail address in January 2014. I He advised me on several occasions. He discussed about Smriti Kana with the head of the department of Palliative Care, Melbourne, and sent me the excerpts of their discussion on the use of Albumin. When once in February, 2013, Smriti Kana’s condition had begun to detoriate, B.P was 80/60, and pulse was 100, Dr. Rajagopal advised me to give her ORS L and to check the B.P after one hour. I did it and she recovered. After a few hours he told me,’ I hope that she gets a night's good sleep. We shall take a day at a time. All the best to both of you.’ After her sad demise, he wrote to me, ‘I see that you are staying awake through the early hours of morning. I certainly hope that the next days see you suffering a little bit less. Though the wound is going to be very raw for a long time to come.’
Coping with the loss
After Smriti Kana’s death my daughter and I were so depressed that we could not do any of our routine tasks. There was no one to take care of my child. She began to misunderstand me. My friends helped us at this point and arranged for a visit to a psychologist. After a long period of counselling we managed to return to normal life.
I don’t think I will ever be able to overcome the pain that I have been through. Yet I'm trying to cope for my daughter's sake. It's my foremost duty to take care of her. I also intend to stand by the people suffering from this deadly disease and help make them comfortable till they breathe their last. I have even completed a Palliative Care course which I am hoping will help me in this regard.
THE DAUGHTER SPEAKS... Ushashi Sinha
I lost my mother on 28th February, 2014. She was my friend, philosopher and guide.
She was diagnosed with cancer, but was not aware of it for a long time. The only thing I knew was that she had an infection in the CBD. I knew in my heart that after a few days she would be fit and fine. For this reason she needed to go under the knife to remove her Gall stone.
Time flew by and it was October. Father was preparing to take Mom to Tata Memorial Centre, Mumbai. That is when I realised that she had been attacked by Cancer but I was still positive that she would be alright after she returns from TMH.
But things changed when they came back. Mom looked more sick and pale than before. I started panicking and became depressed. I began to lose my concentration in studies. I started checking all the medical reports in absence of my father and could not understand a single word. I googled every medical word I stumbled upon.
Things started becoming clear to me from mid November 2013. I broke down, but I was afraid of showing it to Mom. I started calling up my friends. They understood everything and started consoling me saying,” Don’t worry! Things will be fine.” They knew that it was a false consolation.
Meanwhile some relatives started avoiding us, some even came up with advices like ’consult an Astrologer’ , ‘Her lucky colours are blue and yellow, she would be fine if she wears clothes of those colours’ and I even started following their advice.
December went by. It was January. With each passing day, I saw my mother suffering from severe pain. I used to tell her, ‘You will be fine, Mom, just be strong.’ She knew that I was giving her false hope.
Time was passing too fast. My undergraduate final eaxams were knocking at the door but it was too hard to concentrate in my studies. All I wanted was my Mom to be okay and prayed each and every moment of the day to God for a miracle.
Finally it was 25th February 2014. I had gone out for my tuition classes that day. Suddenly I got a phone call from my father. He was very cool then. He told me to return home. I rushed back as soon as I could and first went to Mom’s room. She was not there. Father told me that she was so sick she had to be admitted to a nearby nursing home. I rushed there and found her in the ICCU. I was glad to find her conscious and she even smiled at me. We spoke to each other. I used to visit her regularly and would spend as much time as possible with her at the nursing home. Then she used to say that she wanted to go back home.
It was 27th February 2014. Things were fine till 11:30 PM. Father, myself and an uncle from our neighbourhood rushed to the nursing home at about midnight on getting a call from them. They told us that Mom was not at all well. She was restless and was constantly begging the nurses to release her as she wanted to return home. After some time, a nurse injected a sedative saying that Mom needed some sleep and that we should go home, or else our presence might disturb her. Mom became drowsy soon and we came out of the ICU. We were sitting in the balcony of the nursing home. It was 2:30 AM. Then a few people of the nursing home forced us to leave. Next morning we got another call from the nursing home and rushed to find that Mom was no more. It was 28th February 2014, 8 AM . It came as a tremendous shock for us. I broke down completely.
My depression seemed to increase following my mother’s death and I even started comtemplating suicide. My friends came to my rescue , motivating me to carry on with my studies. But none of my relatives were there to give me mental support. It was my friends, my father and also my Psychologist who helped me much. I knew that my father was also suffering from severe depression. Yet , he could not reveal it for my sake. Rather, he helped me out through this with a smiling face. He would say,’ See, your Mom is with you. She will never leave us. She is still taking care of you. Don’t be depressed. If you become sad your Mom will also feel sad, etc.’
I still feel a strange emptiness and even partly stressed. I suffer from lack of concentration and tend to break down often. But I try to come out. I just try to accept the fact. It’s a fact that she is no more, but I need to move on in life. I try to focus on the positive things, though it is easier said than done. At times I try to comfort my father saying ,’ Mom is in a better place now. She is not suffering anymore.
