a cancer support network helps patients and care-givers deal with
cancer with better understanding
When cancer strikes
By Sharm Aboosally
Kumari in her mid-fifties, married with no children,
a labourer and sole breadwinner, lives in a hamlet near Kurunegala.
She is a breast cancer patient and has had a mastectomy. And when
she met volunteers from Mithuruwela, the newly formed cancer support
network in Sri Lanka, she couldn't stop talking about her story
with a strong need to reach out to those who understood.
Kumari came by bus to the Maharagama Cancer Hospital for
chemotherapy but she doesn't even know the word for her treatment
- she just says that when she is given the drip, she vomits a lot.
When she came for treatment, she didn't have a place to stay and
eventually ended up at a nearby cancer transit home run by a Buddhist
planned on staying in Maharagama for another four days for treatment
before returning to her village and does not know when she will
return. She has been told she has to return in three weeks for treatment
but has no idea if she can, or of the importance of keeping to chemo
schedule or how to alleviate side effects.
a private hospital in Colombo, while waiting for a doctor, a Mithuruwela
volunteer was approached by another patient - a man in his 40s.
He was about to undergo chemotherapy and he was fearful - he wanted
to know: "What would it be like? Is it as terrible as they
say it is? What are the costs?" - and finally he asked, "Can
you look at my biopsy report?" He had no information and no
idea what he was in for.
fearful young boy awaited chemotherapy with no idea what the treatment
was or what the side effects of treatment could be. Taking pity,
another patient tells him that he must drink thambili, or king coconut
water, and when the pain is too much, he should take a panadol.
does not discriminate - it cuts across borders of nationality, race,
religion, age and sex. What is common among patients however is
the need for information on treatment, dealing with difficult side
effects or just plain surviving.
Rahula, the Buddhist priest who runs a cancer transit home in Maharagama,
a place for poor out-station patients to stay at when going through
treatment at Maharagama, says that when patients return in the evening
from their treatment, more than even food, they needed someone to
A 37-year-old woman, one of the founder members of Mithuruwela,
remembers that her knees literally buckled when she heard she had
ovarian cancer. She was shocked and tearful. "The first call
is the hardest to make - it's hard to tell people. I called two
friends who had cancer - I wanted to hear from people who knew.
I just called my friend Kumudini, who had fallopian cancer, and
doctors were not forthcoming - my husband and family were supportive
but didn't know enough about cancer to know how to deal with it.
I was the first cancer patient in the family. We were so ignorant
- cancer was something we had heard about happening to others, never
to us. I wanted to ask what should I do, what were the next steps,
what to expect."
young woman's saga began when she and her husband, who were having
difficulties conceiving, went to the gynaecologist. "I had
been tired but I thought it was because I was working too hard or
something. You don't listen to your body sometimes. A scan showed
I had a large cyst - I was in shock because I never knew anyone
with cysts. I had a cancer blood test which came back negative -
what I didn't know at that time was that this test is not conclusive
and tests only for a fraction of cancers."
undergoing a laparoscopy, the cyst was punctured and burst. A biopsy
showed that the cyst was malignant and open surgery was done with
a full hysterectomy.
“When I was told that it was a cancer, I was in
shock and couldn't absorb it. I was too tired, too weak and too
sick to look for information - and sometimes too dazed to keep track
of everything I was told," she said.
didn't know about pain management after a large operation. I told
my doctor that I didn't want any pain but there was a huge amount
of pain and only after I requested repeatedly, was the medication
increased sufficiently. I went into menopause after the hysterectomy
and I didn't know what was happening to me. I didn't hear a word
from my doctors about possible side effects."
this young woman, information became the key. "If I knew then
what I know now, it could have helped me. I didn't know the questions
to ask - are you sure the cyst is not cancerous, what are the side
effects of this treatment? I was lucky because I had a friend, another
patient, to turn to for regular help - I wasn't hearing what I needed
to from anyone else and I had a need to know more."
This is the reason she, and others, have formed Mithuruwela,
a cancer support network for patients and care-givers, committed
to providing a better understanding of cancer, especially its treatment
regimes and services and coping mechanisms-by sharing experiences
and knowledge. Mithuruwela aims to help patients and care-givers
make informed decisions about dealing with cancer so that they can
look beyond the diagnosis and deal positively with the treatment
and its after effects.
want to ensure that others benefit from our experiences - so that
some good can come out of something bad," says this cancer
survivor and founder member of Mithuruwela.
will depend on a strong and informed network of volunteers who will
form the backbone of the information and outreach network that they
plan to set up. Donations and funding will be gratefully accepted
but their main need will remain developing a network of volunteers
- patients, care-givers and others who want to help - to assist
cancer patients and care-givers through information and support.
I would ask my doctor about pain medication, I would ask if the
medication they were giving me was the best available or if there
were other options that maybe I could get down from overseas if
need be," says this young woman.
now know that chemotherapy needs to be given within three weeks
of surgery, as this is the optimum window of opportunity for successful
treatment. Now I am assertive, question my doctors and I read all
Common myths are that cancer patients are emaciated. "You
don't have to be emaciated - you can sometimes put on weight because
you are slowing down like I did," she said. Your doctor must
be accountable to you - allow you to ask questions, make sure your
biopsy is correct. You don't always have to have major side effects
to suspect cancer - you could be just tired; and you don't always
need to have a family history, she says.
react differently to a diagnosis of cancer. Some patients don't
like to talk about it - while others need to. Some need the facts
glossed over - but most patients need information to make sense
of what is happening.
people don't know how to react when they hear you have cancer -
some stay away and don't call, which can upset the patient. It's
important that the patient is not left alone and instead, surrounded
by a loving, positive environment, Mithuruwela volunteers say.
care-givers is also an important part of cancer treatment. "In
Sri Lanka, care-givers are often not given enough encouragement
and support. When dealing with a disease - especially a long-term
one - a huge toll can be exacted from those who care and support,"
Some patients are never told they are terminal as doctors
and patients find it difficult to deal with bad news, let alone
break the news to the dying patient. In one case, a patient was
never told her case was terminal and kept selling property to pay
for her treatment.
the end she was bitter about not being told as she would have preferred
to have saved this for her young children, had she known her true
situation. Support in helping to bring about acceptance and planning
for the end is also a key aspect of end of life care to patients.
The worst time can sometimes be after the treatment ends, a patient
said. Previously you had a treatment schedule and deadlines, now
there is nothing to follow but the possibility of secondaries, or
a relapse. Follow-ups can be cursory. You cannot go back to being
normal - because you are not normal. Life can never be normal again.
You can't trust your own body anymore. At any point, depression
can set in. Counselling may be required but is not an easily available
option is Sri Lanka, volunteers say.
a patient, you go through stages - you cry, whine and ask 'why me'?
Finally comes acceptance - and then you begin to fight back. That's
when you need information," a patient says. "You need
to have ready access to that information at the point in time when
you have come to terms with having cancer."
maintenance is not emphasised enough - simple things like eating
orange-coloured foods, particularly fruit, and not drinking coffee
or eating salted, cured or smoked foods for instance. When you know
what can be done to minimise a relapse - it empowers you, a Mithuruwela
FOR THOSE WHO CARE
Although cancer is the third largest cause of deaths in
Sri Lanka, there is a serious dearth of information on this disease-particularly
in the national languages, Sinhala and Tamil and among the disadvantaged
and marginalised who are most in need of help.
respond to this need, a group of cancer survivors and friends have
launched Mithuruwela- a cancer support network. Mithuruwela is seeking
support for its activities through reaching out to like-minded volunteers
who would help with its activities.
are required in areas including administration and coordination
of activities; activities related to the production of information
material in all media (writers, editors, translators, proof-readers,
etc); manning an information desk and cancer hotline; visiting and
talking with patients and their families; assistance in raising
awareness on prevention; and fund raising.
and monetary donations would be gratefully accepted and utilised
fully for the Network's objectives. Working with a multi-disciplinary
group of health professionals on their Advisory Circle, Mithuruwela
will implement a comprehensive plan of action beginning with the
launch of the Network's website, www.mithuruwela.com.
will coordinate activities with existing government and private
organisations to reach and provide support services for the patient
and care giver. Members of the Group's Management Circle that leads
its activities include Ryhana Raheem (Prof of English, Open University),
Kiran Dhanapala (Economist), Suhenthiran and Mala Thalayasingam
(Lawyers), Malathy Knight-John (Economist), Sirancee Gunawardena
(former Principal, Ladies College), and others.
welcomes your suggestions and support. Please write to Mithuruwela@hotmail.com
or visit their website: www.mithuruwela.blogspot.com