Welcome to Bangalore Cancer Support group (Connect to Heal) Blog page

Welcome to Bangalore Cancer Support Group (Connect To Heal) Blog Page
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Friday, August 22, 2014

An inspiring story from an Aspiring professional, new Father, Trekker and Marathon Runner - By Kanishka Lahiri

I wrote up a summary of my story for your blog - largely inspired by this post which resonated a lot with me. .. thanks for maintaining such a great resource.  

BY  Kanishka Lahiri

I’m 39, male, a Bangalorean since 2006. I work in the semiconductor industry - my professional life is engaging, fun, filled with many challenges. Outside of work, my main pursuits are long distance running and trekking in the mountains – I’ve run several marathons and ultra-marathons, and have trekked or run to incredible places in the Himalayas. I’m a coach with one of Bangalore’s popular amateur running groups. My wife works in the tech sector too, and is as busy as I am, balancing work and her pursuits in Hindustani music. We have a 6 month old son who was born this year in the middle of crisis.

In October of last year, I developed an annoying dry cough. It didn’t affect me much, and I continued work and running through the end of the year. By Jan it worsened and was making running difficult. I had it checked out (X-rays, CT) and was treated for pneumonia. Various antibiotic courses and bronchoscopy procedures went by, but a diagnosis remained elusive. Tuberculosis was suspected. Daily fevers started. Running stopped. The cough, as well as the patch in the right lung refused to improve. Baby was born. Intravenous drugs continued through Feb and March. Repeated tests for TB were negative, but treatment started anyway. Steroids were started in April when the suspicion turned towards something called Wegener’s Disease. By this time the X-rays were worsening, so a CT scan was redone, at which point the doctor ordered a PET. The PET was inconclusive, but it was obvious that the right lung was severely compromised and surgery was inevitable.

The surgeon said he would decide on the operating table how much of the lung he would remove, based on the extent of damage. It became necessary to remove the entire right lung. Post operative biopsies on the lung tissue confirmed Classical Hodgkin’s Lymphoma, Stage 4A. 

I did well immediately after surgery, and was removed from the ICU within a couple of days. However things went south soon after. A week later, I developed severe chest pains. Two weeks later I was suffering from extremely high fever (104+), and was given my first chemo dose. A couple of days after that, I experienced a series of seizures, collapsing in the hospital bathroom after the first one. Back in ICU, I was put on a ventilator. It was almost a week before my condition stabilized. 

I was discharged from hospital late June, after the second chemo dose. I returned home unable to breathe without oxygen, unable to stand or walk unassisted, 15 kg below my normal body weight, impaired vision, and non-trivial neuropathy in the right leg. Over the next two months, three more chemo doses were given. At the same time, I started recovering fast, and steadily gained body weight, muscle strength, and the ability to breathe without oxygen. 

Last week a fresh PET scan was done. I was declared to be in a state of “Complete remission”. Currently, body weight is back to normal, I’m walking 30-45 minutes 3 or 4 times a week, doing yoga, pranayama, and strength training to improve fitness. I’ve started working from home part time, and am having fun playing with my 6 month old. The doctors have decided to reduce the number of chemo doses a little, given that I am doing well, and radiation therapy plans have been cancelled. Tomorrow is my 5th chemo, and the course should complete by mid-November. Scans will continue for now at half yearly intervals.

Overall, I’m feeling great – it’s like the clouds have cleared, and I can see things for what they are. I would not have had the self-confidence to write this piece a month ago. There is apprehension about the future, since life with one lung will have its own risks and limitations. But near term, I have clear goals that I think are achievable with patience and practice: improving my breathing, and get back to physical activity, including some hiking and maybe some running in a few months. Towards this end, I have been practicing climbing stairs in my apt building to re-build aerobic capacity, and am learning how to do pranayama. If all goes well, maybe a trip to the Himalayas is on the cards for next summer!

*** CTH thanks Kaniska for sending and permissting us to publish his story. On behalf of CTH  I recommend you to check Kanishka's FB site , amazing photography and story lines. (Lipika)

Wednesday, August 20, 2014

CARING FOR LOVED ONES WITH CANCER : As told by Kamalini Kumar Ph.D. from Clinton, Iowa, USA.

By Kamalini Kumar Ph.D. from Clinton, Iowa, USA. 

Life changes when a person is told “You have cancer.” But the patient is only one of the people affected by the cancer. Life also changes for those who care about and love the person with cancer. And life also changes for the person who will help the patient get through the cancer experience – the caregiver.
Having lost both my only brother and my mother to cancer in the last 3 years, I have been thinking a great deal about this disease which seems to evoke so much fear and trepidation when one hears the diagnosis. What metaphors do we think of?  One has to just read the obituaries to show us how we think about cancer.  Long ago, I read a book by Donald Miller called "Blue like Jazz" where the author referred to the metaphors we use in life that often determine our attitudes. The overwhelming majority of metaphors for cancer are "war metaphors" such as we battle cancer, we fight cancer, we overcome cancer, we do not accept defeat, we will win, we will rebuild our white cells, she/he is a cancer survivor, they are struggling with cancer and so on. Do we think like this when we are diagnosed with diabetes or hypertension, asthma, COPD or other chronic diseases?
I think that because of these war metaphors, many people who have the diagnosis of cancer suffer and feel more burdened than in fact they should. Most of them are frightened beyond their need to be frightened and this affects their health. Some might feel that since they have been thrust into this deadly war, they might just simply give up and wait till the end comes.
What if there was another metaphor, another way to think about cancer that would be more accurate than the war metaphor, maybe then, cancer would not prove to be so deadly. Research has shown that the way people think about cancer affects their ability to deal with the disease, thus affecting their overall health. If you or someone in your family were given this diagnosis today, maybe you would express shock, fear, apprehension, tears, yet, the survival rate of cancer is far better than many other diseases. What if we changed the metaphor and looked at the diagnosis of cancer as a Marathon…. a Relay for Life as it were!
The Marathon originates from the ancient Greek legend of Pheidippides who was a messenger from the Battle of Marathon in 490BC. It is said he ran 25 miles to Athens from the battlefield to proclaim Greek victory over the Persians and on his arrival called out, “Rejoice, we are victorious,” before he collapsed and died. Marathons were around 25 miles long until the 1908 London Olympic games when the route that was originally intended to be 26 miles, with a start at Windsor Castle and the finish at White City Stadium was revised to include a planned stadium lap finishing in front or the Royal Box, for this to possible some logistical changes were made that brought the total distance up to 26.2 miles that has remained the standard length. From the beginning of training to completing the marathon race, a recreational runner will have on average run a total of 880 miles. Anyone who has trained and run a marathon knows that this is not a race for the fainthearted or the uncommitted runner. It is hard work and requires a great commitment and persistence to finish the race, as does dealing with cancer. There are people who come alongside to cheer, encourage, and support the runner, so too with those with cancer have their cheerleaders, supporters and caregivers. And in the end, the race gets run and the accomplishment is fantastic. If that's how we viewed this disease, maybe, our whole attitude and outlook will be different and we would cope so much better.
 There is a myth out there that the risk of dying from cancer in the United States is increasing. The Origin of Myth is that many people believe that their risk for cancer is growing because cancer figures are sometimes reported out of context. The actual number of people who are diagnosed and who die of cancer each year has indeed grown — because the U.S. population is growing larger, and is aging. Cancer is more common among the elderly, so more cases are to be expected as the average age of the U.S. population increases. A closer look at the numbers by age group shows the cancer risk for Americans is actually dropping. The reality is that the risk of being diagnosed with cancer and the risk of dying of cancer have decreased since the early 1990s. Fewer than half the people diagnosed with cancer today will die of the disease. Some are completely cured, and many more people survive for years with a good quality of life, thanks to treatments that control many types of cancer.
Despite the sadness and shock of having a loved one with cancer, many people find personal satisfaction in caring for that person. You may see it as a meaningful role that allows you to show your love and respect for the person. It may also feel good to be helpful and know that you are needed by a loved one.  You may find that caregiving enriches your life. You might feel a deep sense of satisfaction, confidence, and accomplishment in caring for someone. You may also learn about inner strengths and abilities that you didn’t even know you had, and find a greater sense of purpose for your own life.
Caring for someone going through cancer treatment is a demanding role, but being good at it can give you a sense of meaning and pride. These good feelings can give you the strength and endurance to continue in the role for as long as you are needed.
Overwhelming concern for a sick loved one may distract you from taking care of yourself. You may find there is conflict between the needs of the patient, your own needs, and the needs of your family. Many caregivers forget to eat, don’t get enough sleep or exercise, and ignore their own physical health concerns. Be sure to make and keep your own doctor appointments, get enough sleep, exercise, eat healthy foods, and keep your normal routine as much as you can. It is important not to feel guilty or selfish when you ask for help or take time for yourself. By taking care of yourself, you will be better able to take care of your loved one.
What I want to focus on tonight is:
How to be a Friend Someone with Cancer:
1.     Offer help & be specific
When tragedy strikes, everyone wants to help, but without a specific offer, it's unlikely the patient will actually reach out for help. "Make your offers as specific as possible; babysitting, cooking, taking walks with the patient after surgery, helping with particular errands. The less specific you are, the more you're making the patient do extra work in thinking of ways you can help.
2.     Become their spokesperson
Another important job you can help with? Offer to become a spokesperson. "Send out weekly e-mails to friends, family and supporters, letting them know how the patient is doing and what ways they can help.

3.     Be a friend
Simply being a friend makes all the difference when helping people dealing with cancer. It means being willing to sacrifice all that you have for that individual whether it be money or life or reputation. It means doing something for the person even if you think that you will be taken advantage of. It is helping when you have no energy. It is completely dying to self. It is going the extra mile when there is no road left and you have to build it yourself. A friend truly loves at all times and having one is a gift that most do not receive in this life.
4.     Don't lecture
When it comes to coping, there's no 'right' or 'wrong' way. "We all cope differently, there's no one size fits all. Everyone has his or her own style. We need to learn to appreciate each other's coping styles, unless we notice a friend in such great denial that she's refusing treatment. It's best if friends and family avoid dispensing medical advice. Also, avoid sharing horror stories or barraging the patient with constant phone calls."
5.     Listen
So often, we worry about what to say; sometimes the best answer is nothing at all. Instead of talking, try to listen. Let them lead the conversation. Let them know you're ready to hear whatever they have to say, and take your cues as to where to go with the conversation from what they tell you.

6.     Make them smile
Laughter can do wonders for one's outlook on the future.  Start distributing exceptionally good joke e-mails to your friend with cancer, but make sure you know what kind of humor they enjoy; otherwise your efforts may fall flat.   Whenever you can share funny, amusing anecdotes that help put a smile on the cancer patient's face, it really helps lighten their day even when they are grumpy!

7.     Start a neighborhood food bank
Some days, they may not feel like getting out of bed, let alone making a meal for their family. That's where you come in. "Organize a neighborhood 'food bank' where, if the patient puts a cooler on the front porch, that's the signal that she needs some help with food, and supporters can decide who'll make the food that day and leave it in the cooler. This way, the patient knows she and her family are covered with meals while saving her from making individual conversations with people at a time when she's feeling particularly challenged."
8.     Treat them the same as you would when they did not have cancer
Though it's not easy, the most important thing family and friends can do is treat the patient as they always have. Cancer doesn't change who we are, yet people often become paralyzed with fear in the face of illness.

9.     Be sensitive
It's very important to be sensitive to what they are experiencing. If they are clearly tired, don't exhaust them more by keeping them on the phone or extending a visit. Also, don't talk about people who succumbed to disease."
10.   Get active
Sometimes a change of scenery or behavior can make a difference in a patient's attitude. Whenever a person is dealing with tremendous stress, he or she needs to increase the positives in life. I don't mean positive thinking, but activities or pastimes that inspire, relax or renew. For example, schedule get-togethers with friends to watch a funny DVD. Try meditation. Try creative writing or journaling. Take a trip somewhere warm if it's winter. If it's summer, try walking around the block or sitting on the porch.
11.    Last, but not least, Pray for and pray with your friend with cancer.

Tuesday, August 5, 2014

Tips from experience by Anil Singh (multiple myeloma)

                                                                                                                        June 11, 2014

    Tips from a multiple melanoma survivors and Fighter  

By Anil Singh 

This note is written from personal experience of cancer. I was diagnosed with multiple myeloma in 2007. Multiple myeloma affects the plasma blood cells and the bone marrow. The diagnosis was made in the end stages of the cancer.

What should one do if diagnosed with cancer? Don’t panic. Get a second opinion from an oncologist. Try to accept your circumstance quickly. Do not focus on the circumstance. Attempt to change the circumstance; remembering, that unless you change, circumstances will not change. It is a well-documented fact that people becomes victims of circumstances because their focus is circumstance.

Next, find a knowledgeable and experienced oncologist to guide you through this long-term illness. A good reputation is a guide but it is not the only thing. The doctor must be perceptive enough to understand your personality and persona and treat you as a person and not just the cancer. By demeanor and personal action, he must show his interest in you by listening to you and giving you time. At the end of every meeting, you must be motivated to carry on with the treatment as prescribed by him and in the manner he recommends.

Treatment of cancer is through chemotherapy, radiation, and surgical intervention. Your doctor knows best which one to use for your type of cancer. Whatever the treatment, actually, the treatment is the most stressful part of the cancer, as it has side-effects.

Quoting from one of the most eminent oncologists in India, “Most side-effects are manageable, thanks to our increased knowledge of how to deal with them. We continue our search and commit to work with you throughout your cancer treatments, to make them safe, effective and create as little interruption to your life as possible. Your input into your treatment and how you are feeling is ESSENTIAL in helping you feel you’re best”.

Of course, finding the right doctor has the element of luck. But your diligence and what you seek from the doctor is important.

Try to take the medicines in the quantity, manner, form and timeliness, as per the doctor’s instructions. Clear any doubt on the dosage, etc before you leave his table.

Eat nutritious food, 4-5 meals instead of three large meals. Make efforts to what constitutes nutritious foods.

Try to get natural, restful sleep free of drugs. This is one of the important criteria for the healing process.

You need emotional support. To feel wanted, respected and loved by those from whom you expect it. Emotional support is one of the key factors to help you overcome your cancer.

Prayers, they work. But it is better to be prayed for than to pray. The treatment will deplete your energy levels. But you must exercise. Try to make it 30-45 minutes everyday. You must attempt to remain mobile, as it will give you confidence and mitigate your feelings of helplessness which naturally engulf you with a long-term disease like cancer.

Act with the conviction that all cancers are treatable. A majority of the cancers are curable provided caught in time.

Stay away from the internet. If you cannot, then remember that the internet is for information and not treatment. Your treatment source is your doctor.

Lipika's Story Cancer Survivor (Fallopian tube)

Lipika Phani,– Cancer Survivor (Fallopian tube) story as told to Ritu Sharma 

Initial signals

At the age of 58, Lipika, was diagnosed with the cancer of the Fallopian tube. Though there were no alarming symptoms, in retrospect she feels that she did have a sensation of pressure in the uterus while passing urine. Though she had always done the pap smear regularly before, she had missed getting it done in the last couple of years and it was during that period she was diagnosed with cancer.
One night, she suddenly had severe bleeding though there was no pain. Very next morning she consulted the doctor who clearly stated that there was a cause for concern. D&C (to clean out the uterus) was performed but no biopsy was done at the time. Following that a hysterectomy (removal of uterus and ovaries) was done, and a biopsy was then performed. During this time, she was also retiring from her job and had elaborate travel plans as she would be free.


The report suggested cancer of Stage 1. She had to cancel her travel plans that she was so looking forward to. When they visited the Oncology surgeon, he was not satisfied with the results as he felt the cancer may have spread. Another biopsy was done which revealed  stage 2 cancer (the cancel had touched the walls of fallopian tube). Second biopsy was disturbing due to the suddenness of it.  There was a little butterfly in the stomach when doctor said "It could be serious affair". She already knew this and managed to keep her cool and say “I know, I will not challenge God". Another operation was suggested to remove lymph nodes in surrounding areas.  She was not in favor of going through another surgery so soon. But after taking opinions from other oncologists, who also recommended surgery, another operation was performed within 3 weeks of the first one.
Then she had to go though six sessions of chemotherapy, starting 5th day after the surgery.  During this time her spirits were intact. She wanted to attend a training course on counseling, as that too was part of her plan after retirement, but was discouraged by the instructors. After couple of chemo sessions, she realized it was going to be difficult. But whenever she felt better between chemos she would work from home for an NGO. She wished she had not retired, as it would have helped her to recover faster after each chemo.


She started dressing up, wearing big ear-rings, matching clothes, and matching head scarf (she used it as she had lost her hair). The reason being, she did not want anyone to look at her sympathetically and dressing up made her feel cheerful. There were many side-effects of chemo such as weakened muscles and bones. She also had to live with severe back pain. She felt devastated when after the treatment she could not walk properly for 3 to 4 months due to muscle weakness and pain. She would faint several times due to shooting pain while walking. The doctor said nothing can be done, that she needs to slowly build up muscle strength. She felt she will never be able to walk again. But after few months she took up the challenge to go to Kolkata with her old mother in law to settle her in her new apartment. This was her attempt to say to herself - do or die, and it worked. It gave her a lot of confidence. She slowly got back her strength.

Though she still struggles with few ailments such as spondilytis,and some nerve issues,  she keeps herself very active. She has completed her course in personal counseling and is a practicing counselor and a soft-skills trainer. She is part of a child helpline group and also devotes some of her time at the street children’s home. She has joined as one of the founder member of CTH, the Cancer support group with Padma and Mamata and groupis growing with the help of other cancer survivors and caregivers

Lipika’s Thoughts

What she has to tell people is –
-          Do not ignore even a slightest change in your body, get it checked out
-          Ensure that you get regular checkups like pap smear and mammograms done
-          Cancer does not mean end of the road, there is life beyond Cancer