Looking back at 2017 sometimes give me goosebumps as it has not been very long.....
EXPERIENCE
Looking back at 2017 sometimes give me goosebumps as it has not been very long. My Ammi injured her finger pretty bad, my Dadi suffered a heart attack followed by developing “water in lungs” two times within a span of 6 months and just when things couldn’t have become any further complicated, my Dada developed jaundice and was diagnosed with a rare and deadly type of cancer they called “Cholangiocarcinoma!”
My siblings and I grew up mostly under the care of our Dada and Dadi so these sudden changes were enough to left us shaken.
Several things came into my mind. Emotions were high. The way the diagnosis was explained to us was itself very intense especially for my father who relied on his parents so much.
Late stage, declining health and old age were some of the factors that made it difficult for any therapeutic intervention to be done. These all factors contribute towards a poor prognosis. The word “cancer” itself is enough to give you a good scare.
My Baba was totally against revealing the news to his Baba so he was kept in the dark for nearly 3 months which did him no good as he became anxious and frustrated day after day for he could feel himself not getting any better despite of taking a lot of remedies for strength including Hakeem and Homeopathic medicines. It was not until my Phuppos from America and Canada came to Pakistan and decided to tell him exactly what their father had and I think it was the right thing to do. Even though it created a turmoil in his mind, he himself had started to sort out things and understand the reality. I guess sometimes knowing the truth itself clears out many confusions. Now he was worried to wrap up his work, to put the finances in order and to make things simpler and easier for his family. He had started to accept advices and instructions in terms of food and acceptance of help because he was beginning to realize what his body was dealing with.
Cholangiocarcinoma, which means a malignant cancer of the bile ducts causes obstruction to the flow of bile (a liquid produced by the liver that helps in digestion and carries break down product of Red Blood Cells). So, the only way this cancer comes to attention is when the patient develops jaundice. Other symptoms like weight loss, pain, decrease appetite, night sweats, breathing difficulty etc. usually go unnoticed late until the patient develops jaundice and nausea of such a severe intensity that its enough to give a good phobia of food to the person. Cancer causes wasting of the body and when the patient has no urge to eat, it just makes things worse. We had to divide his meals to small frequent portions. Somebody told my Baba to stop giving my Dada any sweet thing as it would worsen the cancer. It was just so torturous for him as he has a terrible sweet tooth. Later my Dada was rescued by his gastroenterologist who strictly told us to give him anything he likes. Now that he was losing weight, he needed calories from every source he could.
Every additional tonic or herbal remedy that was given to him would fill up his stomach and thus further decreased his urge to eat so we had to eventually stop all of that. From a full plate, the meals came down to tablespoons and now its teaspoons of this and that so he has to be given food supplements to meet the daily nutritional requirements.
Particularly at my Dada’s age (82), there is no such cure and so what the doctors try to do is called “palliative care” in which the root cause of the disease is not eliminated but the aim now becomes to relieve the patient of his/her symptoms and improve the quality of life. In my Dada’s case, it was the only thing that we could do. Even though we met oncologists, gastroenterologists and radiologists, all they had to say was that there was not much that could be done. With this particular cancer, toxic waste starts to accumulate in body and when it sees no way out, it spills into blood causing sepsis which is a form of severe infection and if not treated may prove fatal. Since his bile ducts were blocked because of the tumour growing inside, the doctors placed a stent in his duct to relieve the obstruction. The stent never completely gave him relief as he developed fever every now and then.
It pained us to see him deteriorate as days passed on. There are no words that can describe how difficult it was to see him go through all of this. He was on IV antibiotics that never come without their side effects. The stent itself became a source of infection. From slow walking, it was now on wheel chair. On most of the appointments we couldn’t take him as he was either running a temperature or was too weak to go.
At this time, he needed help the most. For a man who was independent his entire life, it was difficult to go through such an abrupt change in life and even more difficult to accept help. As his beloved family and caregivers, we tried talking to him, helped him clear his mind, made him realize how well he has raised us all and how he was a role model for all of us. Sometime, we would get anxious and depressed and there were moments where we felt that we might give up because its not just the patient himself but the entire family that’s fighting with him/her to make every coming day worthwhile.
We did things in front of him that pleased him the most. We made sure that he was praised besides being taken care of and loved. We bought him the food he loved to eat. In all of this transition, he made the entire family united, brought us ever so close to each other, taught us to become stronger than ever and independent and to stand like a rock in the face of obstacles and hindrances. Before all of this, I could have never imagined to be standing in the hospital and watching his ERCP being done or giving him a bath, feeding or comforting him, or searching every possible doctor to find answers to millions of questions that we had regarding his diagnosis.
His ducts became blocked once again as the tumour continued to grow. He has been in and out of the hospital many times. Now he has two tubes that drain his bile outside the body in a bag. All of this has left him in a state where his days and nights are spent on his bed with care being taken by nurses that we had to arrange for him. He sleeps a lot now as he is becoming weaker day by day. The infections have become so resistant that he is currently on three IV antibiotics.
World Cholangiocarcinoma Day is celebrated every year in the month of February. Donations are collected, awareness raised and seminars arranged where patients and caregivers share their experiences. I felt compelled to write this down and share the story of my family.
My Dada is terminal. Each day is a challenge. I do not know how long he has got to live. One thing that can make the whole difference is the positive role of the caregivers. Being in the present moment is very essential. All sort of things go through your mind when its your loved one. But only when you accept the reality and focus on making the most of the time can you pass through this tuff challenge.
The writer can be reached at bushramajid1896@gmail.com
