Bangalore Cancer Support Group is a group of people, dealing with Cancer, in some form or the other, in everyday life. Our objective is to reach out to the patients, families and caregivers to share our experience, knowledge and information, as well as provide oft-needed emotional, physical, counseling support. To us, each person is a winner, a survivor.
Welcome to Bangalore Cancer Support group (Connect to Heal) Blog page
Welcome to Bangalore Cancer Support Group (Connect To Heal) Blog Page
Contact us : Cancer.survivors.help@gmail.com
Visit our website Connect To Heal
Contact us : Cancer.survivors.help@gmail.com
Visit our website Connect To Heal
Wednesday, October 1, 2014
Read Rumno's journey at her blog site http://rumnom.wordpress.com/
CTH received a mail late 2013 from Rumno which reads
"I am Rumno, a 49 yrs old women who had been diagnosed with breast cancer (stage IIB) in October. Since then I had gone through the surgery to remove the lump and lymph nodes. Based on the findings, I was advised (4+12) = 16 chemo cycles, 40 radiation and endocrine therapy for 5 years. ........
I am otherwise feel quite positive that I will be cancer free and will lead a healthy life. I have also started writing a blog (rumnom.wordpress.com) for my friends and families from the time of diagnosis
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.
CARING FOR LOVED ONES WITH CANCER
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!
|
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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.
Treatment
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.
Recovery
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
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
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