Personal Journey with Cancer
Phone: 91 944 869 7690/080 2663 7995
I am a doctor with specialisation in psychiatry. I retired as Professor of Psychiatry from the National institute of Mental Health and Neurosciences, Bengaluru in 2004. Radha is my life partner and social worker by profession. I provided voluntary services at the Sri Shankara Cancer Hospital and Research Centre(SSHRC), Chamarajpet, Bengaluru for 18 months(July 2015 to Jan 2017).
I am working to understand the emotional needs of persons diagnosed with cancer and their caregivers. My goal is to empower the persons diagnosed with cancer and their caregivers, with self-care tools to maintain their mental health and to address the multiple emotional needs arising through the cancer journey.
I was diagnosed with colon cancer in July 2013. I have had surgery, followed by 7 months of chemotherapy. It is over two years since I am in a disease free status.
What was it like to be diagnosed and treated for cancer?
Life as I and Radha, knew changed suddenly and drastically in July 2013. Currently, we live with hope and cope with uncertainity.
During treatment, there were issues of extreme fatigue, low drive, changed taste and smell, sleep disturbances and at times feelings of depression. Radha needed to do much more than usual- repeatedly driving me to hospital, cooking each meal as a fresh meal, putting up with my emotional changes and also handling her own emotions.
The 7 challenges that we experienced and the way we addressed during the last three years are:
First and second challenges were to understand the illness and the treatment process. The method that worked for us was to fully and meticulously utilise the medical care, the reading of books on cancer, reading the experiences of others who fought cancer and talking to people taking the same journey .
The third and fourth challenges was changes in personal and professional life. With the illness, my professional life of , clinical work and travel came to a grinding halt. Luckily it was only temporary. I addressed emotional turmoil by sharing feelings, writing down my thoughts and feelings. I kept my physical activity of walking as much as I could do. On days when I could not go out of home, I walked in the house. Music was of great help. Radha and I chose to share the illness with all our friends and relatives. This was a positive step as we received enormous amount of support from all of them. I must attribute my recovery to this support. All patients should consider mobilising these resources by sharing their illness with those who can support them. Of course, the response was varied and not always positive. I took to providing professional support through email, telephone and making video presentations.
The fifth challenge was the altered family life. My wife took over all of the caring and running the home. Spousal and family support is vital for my recovery.
The sixth challenge was to address the social network of friends, colleagues and wellwishers. They have been of great help, as they all reached out and supported us during the year. Some visited us, most kept in touch by phone and email. What was most helpful to me, during depths of distress and depression, soothing words from them about my past resilience and ability to address problems.
The seventh challenge was to address spiritual issues. Reading of spiritual books, like ‘Bhagavadgita’, ‘Man Human to Man Divine’ from Aurobindo Ashram was most helpful to understand the meaning of life and illness. Similarly the book of Arun Shourie (Does he know his mother’s heart?) was helpful.
An important part of my recovery is the entry to the family of our grandson, Vivaan, in August 2014, of my niece Shyla and Gagan!
It is over two years (March 2016), since I completed chemotherapy. I still have the chemoport in my body and visit the hospital for maintaining it every 6-8 weeks and to monitor the CEA levels in blood. I have an annual PET scan to monitor for any recurrence. Otherwise our life is back to pre-illness status.The last PET scan was in July 2017. There was ‘no evidence of disease’.
To summarise our cancer journey, there are three issues that I would like to emphasise.
Firstly, all persons diagnosed with cancer and caregivers should use all available literature to fully understand their illness and treatment. Knowledge is power in a situation of many uncertainities.
Secondly, there is need to maintain emotional health as it helps in the recovery process and makes quality of life better. This can be done by reorganising the routine life to include physical activity/ exercise, listening music, relaxation/yoga/meditation, joining a support group, reading of spiritual books and focussing on the immediate rather than thinking too far into the future.
Thirdly, in the cancer journey, there are multiple ‘stresses/crises points’ . These can be addressed by sharing of feelings, utilising the support of friends, writing daily personal feelings/ thoughts for a minimum of 20 minutes, focussing on the immediate rather than thinking too far into the future and using personal religious resources to understand pain, suffering and uncertainities of life. One other important point to recognise that similar to taking medical help for infection etc, emotional help is available from mental health professionals.
Radha and I recognise that the last 4 years have been challenging and we will live with uncertainity for years to come. With the entry of illness, our lives have definitely changed both positively and negatively. On the positive side, we are emotionally closer and richer. We literally, take one day at a time and make the best of the time. We work towards enriching the lives of the persons diagnosed with cancer and their caregivers.
Since September 2017, I am part of a whatsapp group ( MY EMOTIONAL HEALTH) of cancer survivors, caregivers and professionals with interest in maintaining EMOTIONAL HEALTH by SELF-CARE. We communicate personal needs, share useful information and most importantly support each other. I provide the technical emotional health information and skills for self-care. If interested to join let me know. 91 944 869 7690.