Can ‘love’ defeat Cancer?

 

This is a true story.

A true story of a young boy and a girl.

Karan, a young man, around 25, was very happy that he got selected after passing through a highly competitive examination and  joined his MBA Course at IIM Kolkata.

Suddenly he noticed blood in stools. His happy world turned upside down !

He was shocked when he was diagnosed as Cancer of Rectum. Very unusual to happen at this young age, particularly when there was no family history. After evaluation we suggested that he undergo Chemotherapy and Radiation first, followed by surgery.

He was very brave. Accordingly he followed all instructions. He had chemotherapy and radiation and came back for evaluation 3 months later. The tumour had regressed significantly but, in his case, as it was very close to the anal verge I had suggested surgery with a ‘permanent colostomy’.     Permanent colostomy at such a young age is certainly not easily acceptable.

He used to come with his fiancée. Obviously there was also a factor of a long term relationship.

At one point of time they talked to me together saying “what about us getting married?’’. I said, “ See, at this point of time I would advise you against marriage because  you are still on treatment” and the matter was pushed to the background.

So he said he would rather take more chemotherapy and avoid surgery if possible. He went back to Kolkata but after a month came back saying that doctors in Kolkata have convinced him that chemotherapy is not a good option and he should undergo surgery. He was then prepared for having a permanent stoma. His fiancee was fine with him having a stoma. Anything to save his life!

The surgery was uneventful, he had a stoma, everything was going fine.

He was  later taking chemotherapy at Kolkata, coming and seeing me for followup.

His fiancee would always accompany him and had an anxious look at each followup. With the help of her and friends and he completed his MBA and came to me smiling saying that he has an MBA and also a job offer.

He asked me, “Can I do a job ?”.

I said, “Of course, you can do a job”. “I can certify and even put in a word for you”

I knew he wanted to plan a start up.  “What happens to your start up?”.

He said that at this point a job is better for him for stability.

However, unfortunately, this young man had a recurrence and he was put on further chemotherapy which was pretty toxic to him. I gave him a certificate that he could do a job but as bad luck would have it, his condition did not improve and he went on from 1st line of chemotherapy to 2nd line of chemotherapy with more toxicity.

All the while he and his fiancée were always together supporting each other and it was really touching to see a young lady, knowing fully well how the boy’s condition is shaping up, is willing to give him all the support and all the love that he needed.

They had researched all over and found that there was some kind of therapy  in the USA and were wanting to go there. So all the necessary formalities were done. They were all set to go  but they came and met me just a couple of days ago.

Yes, there was uncertainty and apprehension in his voice. But she as usual was very supportive.

She showed me proudly and said “ Two weeks ago we decided to get married and this is my mangalsutra”. I was completely astounded at this girl’s courage and love for someone who is probably has limited options, leave alone live normally.

Then she asked me, “Doctor, can love defeat cancer?”

I was dumbstruck as I really did not have any clear answer but I did not want to take away the last flicker of hope from them.

“Who knows? May be  love can control cancer and let’s hope for the best”.

God bless those who have such unconditional love and those willing to fight with all courage inspite of adversity.

Wear blinkers and run the race

Just imagine a horse running a race… the blinkers are put on

The literary meaning of blinkers is “a pair of small leather screens attached to a horse’s bridle to prevent it seeing sideways and behind and being startled”.

The analogy cannot be better.

The moment someone is diagnosed with cancer, unsolicited advice pours in from all corners. Right from sugar free diet to herbals, nature cure, toxic effects of chemotherapy and stories of how their relatives had pain etc. There are very few encouraging voices. Sympathy can overpower you and you don’t need it.

I always advise the patients, ‘just imagine that you are running the most important race of your life’. Don’t lose hope. Don’t allow people to discourage you. In fact ask people to mind their business. You have to attend to the most important business – your health and your life. NO free advice please. If anyone still wants to offer advice send them to me , I will handle them.

Put on the blinkers, don’t look look sideways or behind and don’t be startled by all the noise. Just look at the finish line and run wth all your might

YOU HAVE TO RUN AND WIN !

 

 

 

Giving voice to those who cannot speak ! Vocalizer for patient

 

vocalizer

Long ago my uncle, a neuroscientist was admitted in the ICU with a blood clot in the brain. He was alert but had to be on ventilator. He was desperate to communicate with his family and relatives. My father was anxious to know what was in his brother’s mind. There was no way of knowing whether he was in pain or wanted to meet his son and many other questions.

This happens everyday in the ICU for many patients with an endotracheal tube . Intubation involves placing a tube in the throat for breathing which takes away the ability to speak but the mind is still alert as many of them are conscious. It is also true of post surgery cases as normally after a very major surgery, on the first post-operative day, the patient is on ventilator and is perfectly conscious.

How does one communicate in such situation?

Writing with all tubes dangling is difficult and the handwriting is hard to decipher.

It’s difficult to see them struggle just to say “ I am feeling cold” ( ICU for some reason is kept cold at 180 C).

We were thinking of a ‘touch activated figurative communication’ program. None were available.

Fortunately I could identify Tata interactive system who are the leading developers of learning solutions. With the help of ICU feedback from Dr Sanjith, we set out with a set of common requirements and the touch sensitive visual icons. The patient could communicate his simple requirements on his personal needs, medical care and also communicate with the family.

Vocalizer for patients is a free app available both in android and iOS platforms. It may be downloaded on a tablet and used for communication by your near and dear.

Not only in the ICU, it is also useful in situations where elderly cannot communicate effectively or have some other issues like tracheostomy or inability to speak due to neurological disorders.

This was funded by ‘Crusade Against Cancer Foundation’ as a social initiative. This will be improved further by adding more language options.

Hospital ICUs would serve patients better by just enabling ‘vocalizer on tablet’ and also displaying a notice in the ICUs.

Hope to make a difference !

Fearless Crusaders

 

Last Friday was a great day.

In fact I can name it  as the  ‘Survivors’ Day’.

Nearly 10 patients who are long time survivors of 5-20 years came for review on the same day, by random coincidence. It certainly makes one feel happy to see them leading normal lives without any fear

I was particularly happy when Suhasini, a young lady came in with a broad smile. I was very glad to know that she was operated 6 years ago for Colon cancer.

She asked me, “Doctor, can I start my family now”?

I was thrilled as I know that she was single when she got operated.

I said, “Certainly, I would like to meet   the wonderful young man who accepted and married you”. She said he is on the way. “We were courting before I was diagnosed but he never left my side and continued to be my support. After 5 years he convinced his parents and even my parents that he will be with me forever”. As she was saying this her husband walked in. I am genuinely proud of this young man. There are so many instances where engagements are broken after diagnosis not just in a young person but even in their parents. In a society with so many unfound fears and superstitions, this couple stood like a shining beacon. I assured them that everything is fine and they can have a wonderful family.

I do have many instances of such remarkable couples who not only fought the disease but went on to lead their lives with full vigour.

Hats off to such fearless crusaders.

Elderly parents and NRIs

 

Sharda Joshi is around 70 years. She was diagnosed as rectal cancer about 3 years ago and underwent surgery with a permanent colostomy. She is a remarkable lady, a literary critic,   managing her stoma and continues to lead a very productive life. She lost her husband nearly 10 years ago. Her only son has moved to California. He did come for the surgery but as many other NRIs, has work pressures and finds it difficult to come to India to see his mother. Obviously he is pressing her to come to California to spend time with the family.

Sharda talked to me and expressed some genuine concerns.   She was worried about long flights and concerned how she would manage the stoma.

“I want to go and see my grandchildren but, everyone is going to be busy with their own lives, school and homework. Weekends also turn out to be a busy time with the activities, additional things to do, groceries and other chores.”

She said, “What am I going to do while they are at work or in school and even when they get back they are going to have their own friend circle. Why should they even bother about an old lady sitting at home. Here I have my friends. I can talk to them, call them over and even go to some cultural activities and plays”.

” If I fall sick in a foreign health care system , I have  no insurance cover.”

So she said, “Doctor, can you give me a certificate stating that I am not fit to travel to California ?” This was rather unusual as many patients ask for ‘fit to travel’ certificate.

The more I thought about it, the more I realised that though there is some emotional guilt on the part of the children, the parents are better off in their own homes and environs. I see a lot of elderly couples or many single elders managing on their own with some help but having more social interaction here in their country.   It is really unfair to uproot them from their familiar surroundings and make them feel isolated in a foreign country with practically no social interaction.

I looked into the factors that really gives you happiness. The socio-cultural interaction becomes an important issue. Yes, we are going to see ageing population and perhaps lonely, and the big challenge is not just to attend to their basic physical needs and medical needs but try and be in touch with them and encourage social interaction.

I know of a family, Mr. Ramakrishnan, whose three sons were senior software professionals in the US, who took turns and  come here in rotation for 3 months. It will be  difficult for many others to do it.

It is fine to allow their parent/s to have a support system and a friend circle.

This is not just a reflection on NRIs but also in many of the families even here in India, the children stay in far away metros and parents stay in their village homes. This is the same story and the same message.

Allow the elderly their space and the freedom to make their choices.

They want their independence and want to be useful.

Family Support is essential for Cancer Treatment and that’s here, at home !!

Suresh, a fit, young Chartered Accountant, , was working out in a gym, when he suddenly had headache and noticed weakness of his hand.  He was then rushed to the hospital.   MRI Scan was done and he was shocked found to have a large mass in the brain.  Further Scan of chest and abdomen showed nodules in the lung and a mass in the abdomen.  In staging terms, it is Stage IV Cancer and as  anyone would assume, the family thought it is the end of the world, but there is always a silver lining in the cloud.  Suresh’s uncle and his wife rushed to me in the night completely shattered at this news.  On further tests he was found to have a ‘germ cell tumor’- the same diagnosis as Yuvaraj Singh.

It is indeed fortunate as this tumor melts away with modern chemotherapy.  They can also be detected by simple blood tests like Beta HCG and ALPHA Feto Protein. Suresh was positive and just said ”Doctor, just give me a chance to run Mumbai Marathon’.

His uncle said “We have no financial limitations and can we go abroad for Chemotherapy if you feel, if it is going to make any difference”.  I thought about it and said that Chemotherapy drugs are standard – they are same and the schedules are the same.  Our Medical Oncologists are very efficient, equal to anyone in the world but one big positive point for staying closer home is’ family support’ and the assistance you can get from so many members of the family and friends.

Manju, his wife, is phenomenal.  She took charge of the whole support system – her sister was asked to take charge of the young children. His uncle looked after the company interests and Manju devoted herself completely to taking care of Suresh, his diet, chemo cycles and of course providing the emotional support he needs.

Emotional support to me is the most important element of cancer care.  Suresh’s friends dropped in to cheer him up and he busily immersed himself in his work, reading and regular exercise.  His company was supportive and rallied behind him.

All were in smiles when Beta HCG started dropping, tumor melted away and at the end of the cycles, he had a lemon sized residual mass in the abdomen which I operated and took out with some difficulty, of course.  After that they wanted to go on a holiday to USA and also take an opinion.

I always recommend that one has to organise the work, the family, because treatment can be long, upto 6 months, with multiple admissions.  Certainly going abroad works out difficult and many times you are in an impersonal environment.  I can assure you that no doctor, other than Indian doctors, would respond 24×7 to their patients.

Suresh and his wife went to Dr Einhorn of Indiana university, a world authority on germ cell tumors who introduced the  Chemotherapy for germ cell tumors.  He was very happy with the care in India and planning of the overall treatment and in fact said  ‘perhaps many surgeons would not have removed the residual mass as it was technically challenging’.  They came back happy and satisfied they got the world’s best care and today Suresh is back to work, full of energy and activity and recently did Stanchart half marathon , a proud achievement for all.

Next week I will write about his passion for exercise and motivation and how exercise helps in treatment