Parimal Ghosh, an 80 year old war veteran and now a cancer survivor, relives his experience of battling the condition for 22 years, his emotions and shares what he has learnt from the whole episode. He is now also an active crusader of the Cancer Awareness Campaign.
How would you introduce yourself?
I fought the Indo-Pak War in 1965, the Bangladesh Liberation War in 1971, and am now fighting against Big-C or Cancer since late 1995. Perhaps, it would be best to call me a Fighter Who Lived For Others.
You have played a significant role in the formation of Cancer Care India. Please tell us briefly why and how you went about it.
As soon as I was declared clinically disease free in 1997, I joined Cancer Sahyog, a cancer support group in Delhi. I enjoyed working with cancer patients. But I was not entirely satisfied. I felt cancer was a strong opponent. In order to fight, defeat and destroy cancer, we have got to be bigger, better and stronger.
On 25-26 November, 2000, Cancer Sahyog organized the first All India Cancer Support Group Conference in New Delhi. After impressive deliberations at the end of day 1, I proposed to Mrs. Harmala Gupta, President, Cancer Sahyog to pass a resolution to form a national body by uniting Cancer Support Groups. She liked the idea. I volunteered, came back home, burnt midnight oil and scribbled down the outline sketch of the proposed organization.
On 26th November, before the commencement of the first session, I discussed the same with Mrs. Gupta, who appreciated and asked me put up the proposal before the delegates. It was my great pleasure, privilege and honour to speak to such an enlightened audience. There was an urgently felt need to create a common platform and unite efforts to combat the growing menace of cancer at the national and international level. CANCER CARE INDIA was born on 26th Nov 2000, and a dream was realized.
Cancer Care India was formed with 14 Member Groups. As on 20th July 2018, it has grown to be the largest network of cancer support groups (54) network in Indian sub-continent, with 51 leading cancer support groups, spread over 22 states/Union Territories in India and 3 countries under its International Wing (one each in Maldives, Mauritius and Nepal).
Since you yourself went through Cancer treatment for yourself, how did you muster the energy to do so much of work to spread cancer awareness?
The pain, agony and sufferings of cancer treatment that I had undergone motivated me to get involved in cancer care mission. Interactions with highly experienced cancer experts, cancer survivors and social workers helped me understand that cancer awareness is very important and will help people overcome stigma and fears attached to cancer, so they are motivated to go ahead for prevention, detection and treatment.
How do you think cancer awareness is beneficial for the people in terms of treatment and other aspects? How far do you think you have been able to achieve that?
Awareness provides protection, and protection leads to prevention and as the saying goes - ‘Prevention is better than cure’. Experts strongly feel that improved level of cancer awareness of people will help prevention of cancer considerably. Thus, Cancer Care India (CACI) and the National Cadet Corps (NCC) the largest uniformed youth force in the World, have jointly launched the ‘Nationwide Cancer Awareness Programme’ (CAP) on 26th May 2003 from Army Hospital R&R, Delhi Cantt.
This is being done in a planned and systematic manner, in two phases.
- Phase one - workshop on cancer awareness is conducted for NCC cadets (boys and girls) in the age group of about 14-22 years by cancer specialists/survivors.
- Phase two - trained and motivated NCC cadets spread the message of cancer awareness amongst the people in their personal capacity and as a part of their community development and social service programmes.
It is very encouraging that the phase two of our programme has picked up momentum and cancer awareness messages have reached people at the grass root level in all districts of our country. Following simple cancer awareness messages are spread to the people:
- Cancer is preventable.
- Cancer is curable if detected early.
- Cancer is not contagious.
- There is life after cancer.
- Do not get scared of cancer but fight cancer.
As on 14.06.2018, 248 major CAPs, have been conducted in 28 states/UTs and 97,886 people, including 71,199 NCC cadets, 1,155 BSF personnel and 25,532 others, attended these programmes. Through NCC cadets cancer awareness messages have reached grass root level in all districts in India. This is certainly an achievement.
A 'Tableau’ on cancer awareness is taken out at the ‘Prime Minister’s NCC Rally’ at Army Parade Ground, Delhi Cantt., on 27th /28th January, every year since 2004, jointly by CACI & NCC.
Mr Parimal Ghosh addressing CAP-179, DG NCC Camp, Delhi Cantt. 22.09.2016
Has it been physically difficult to do so much of work on spreading cancer awareness, post treatment? How do you gather the energy?
I did not face any difficulty in conducting cancer awareness programmes all over the country, mainly because of my clear motivation and dedication. I enjoy the work.
Please tell us about the condition that you yourself went through.
Detection and prolonged treatment of cancer were really very tough physically, emotionally and psychologically. I strongly feel that others should not experience the same.
What were the early symptoms?
I was diagnosed in early 1996. I did not have clear knowledge about cancer. As a result I did not register any of the early symptoms. For example, my rapid weight loss and frequent bouts of fatigue, etc were not taken seriously. I realised later that cancer awareness is very important.
Please tell us how you went about tackling it.
During Nov-Dec 1995, one evening I took out our dog Snoopy for a walk. Suddenly, he pulled me very hard, I fell flat on the ground and developed severe back ache. Detailed medical investigation revealed that I had Multiple Myeloma (Bone Cancer) at stage-3A. It was a real shock and very difficult to accept. Questions came up in my mind - ‘Why me? Are the doctors correct?..........’ It was very tough, but we had to accept the reality of life and went for the treatment to Institute Rotary Cancer Hospital (IRCH), All India Institute of Medical Sciences (AIIMS), New Delhi and landed up at the OPD of Dr. Lalit Kumar, Asstt. Prof. Medical Oncology.
Please describe your experience of managing Multiple Myeloma?
Aggressive Chemotherapy was prescribed continuously for 96 hours (4 days) and I was required to be admitted to the hospital. My elder daughter had to appear in B.A final examination of Delhi University during Mar- Apr 1996. I wanted to defer the commencement of my treatment as inpatient till the completion of my elder daughter’s B.A final examination. The doctor said ‘Cancer cells grow everyday and very fast. So, loss of even a day is a great loss’. However, he realized my concern and was very sympathetic and arranged Radiotherapy on 7th Mar 1996.
On 5th April I was admitted to IRCH and the first cycle of aggressive Chemotherapy (VAD), continuously for 96 hours in each cycle, started. Completed total 4 cycles, from April to September 1996 and BMT (Bone Marrow Transplantation) for 6 weeks during Sep – Oct 1996. Thereafter, I took Inj. Interferon, once daily for one year from 5th Dec 1996. I was declared clinically disease free during Mar 1997. After a review on 3rd Mar 1998, the dosage was modified to one Inj. Interferon on alternate days till 3rd Dec 1998.
I remained clinically disease free for ten years and in March 2007 the disease relapsed. After the PET-SCAN I started taking Thalidomide 50mg, one Cap daily, and Decadron tab. 4 mg daily for one month, thereafter on D-1 to D-4 and D-15 to D-18. On 21st Oct 2009 I became disease free, but Thalidomide continued.
After about one year I had the second relapse in 2010 and continued same treatment. On 5th May 2018 the treatment was modified to Lenalidomide Cap. 10mg, one cap daily along with Dexamethasone 8mg on Saturdays and Sundays.
I think my Multiple Myeloma, from stage-3A, has been very well managed by Dr Lalit Kumar. He has given me 22 years of survivorship, most valuable part of my life, deserves full credit and I am highly grateful to him. In addition to being a very successful doctor, he is a very good human being.
A Second Cancer Diagnosed
In June 2015 Dr. Saurabh Jain, Asstt. Prof., Institute of Liver and Biliary Sciences (ILBS), Vasant Kunj, New Delhi, treated me for some urinary problems and found my PSA was above 10. He kept me under observation and repeated my PSA every 3 months. PSA level remained above 12. Prostate biopsy (Histopathology & Cytopathology) was carried out by him on 27th June 2016 and it was positive. On his advice, I consulted Medical and Radiation oncologists at the same hospital and carried out PSMA test which confirmed Prostate Cancer.
I consulted Dr. Amalesh Seth, Prof. Urology, AIIMS, New Delhi, on 8th Aug 2016. He carried out a physical examination, after carefully going through my PSA record he explained the 3 options for treatment: Surgery (which was ruled out since I was above 70 years); Radiation Therapy (since I was anyway undergoing treatment for Multiple Myeloma, he decided to avoid it); Hormone Therapy (he kept this as an option, if required).
Meanwhile, he kept me under Active Surveillance, checking my PSA levels every 3 months. No medicine has been prescribed. Till now, I am not facing any serious problem. In fact, while conducting CAPs, it helps me to stand as a living example of having two cancers.
Did you face any related complications?
No, not much, but initial 2-3 years of treatment were very tough. My body resistance had gone down considerably and I became susceptible to infection, and also remained very weak.
Were there any side-effects of the medicines?
During Bone Marrow Transplant side-effects were very severe. Now, at times I do feel very tired and suffer from constipation.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
To accept the reality and to go ahead with treatment is tough. These challenges have to be faced with full confidence without losing any time. Patients should have full faith in the treating doctor. The relationship between Patients and doctors is also very important.
Have you learnt anything in managing your condition now that you wish you knew before?
Cancer awareness is very important and help you to prepare. One should muster courage and have full self confidence. Swami Vivekananda once said “All power is within you, believe in that, you are not weak, stand up and express the divinity within you”.
What kind of specialists do you consult and how often?
I consult my Medical Oncologist once in 3 months or on a need basis.
Have you had to make some changes to your lifestyle because of your condition? If so, what are they?
I try to avoid polluted areas, take precautions against weather and infection. Chemotherapy also had an adverse effect on my sex life.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
I did not try any complementary medicine or therapies. Yoga is very useful.
How has your family supported you?
My wife Trisha, two daughters Svasti and Agomoni provided total support. In fact they were my strength. Other members of the family and friends also provided all possible support. These were very useful and reassuring.
Counseling by doctors, in particular Dr Lalit Kumar, and nurses at IRCH, AIIMS were highly beneficial.
What was the hardest part of the treatment? What kept you going? How has this changed your life perspectives and ambitions?
Initial 2-3 years of my treatment was very tough, both physically and emotionally. While in ICU undergoing Bone Marrow Transplant, I used to feel disturbed with the thought that if something went wrong with me, what would happen to my daughters. This sense of responsibility gave me lot of inner strength to fight and survive.
Cancer has brought in lots of changes in me. I have started enjoying small events of life, every moment of life and understand value of life better than before. I also believe that humanity and human relationship are the most important.
Update in Mar 2024 :
It is with deep regret that we inform our readers, that Major Parimal Ghosh passed away in 2023. We will always be grateful to him for sharing his experience with our readers and for his effort on cancer awareness and advocacy over the years.
