Minutes from 1st General Meeting 12-2-2005

Mithuruwela - Cancer Support Network Meeting Minutes
Date of Minutes: February 21, 2005



The first official General Meeting took place on 12 Feb 2005 at the Girl Guides Hall with members of the public that had been notified via the last newspaper article in the Sunday Times, and also by e-mail and phone when possible.

Management Circle participants included Ryhana Raheem (RR), Kiran Dhanapala (KD), Thalay, Mala, Sharni Jayawardene (SJ), Lal and Buddika Indatissa (BI). Two members - Malathy Knight John (MKJ), and Sirancee Gunawardene - were unable to attend.

Highlights of the meeting, decisions taken and follow up activities planned are outlined below.

1. The members of the Management Circle introduced themselves and asked those attending to do the same. Members were asked to write their names, addresses and contact details before leaving.

2. Ryhana, Kiran and Mala briefed participants on the aims, activities, and the history behind the starting up of Mithuruwela - the Cancer Support Network. Mala briefed the meeting about the legalities re. the organizations registration. Ryhana stated that the Mithuruwela’s activities were supported by the National Cancer Hospital at Maharagama, and that the first brochure to be printed was in fact written by the Medical Education Unit of the Maharagama Hospital. She also told members about Mithuruwela’s logl and promotional brochure.

3. The meeting approved the proposal to charge Rs.100 (one hundred) for Life Membership for each Member. Those wishing to become members were asked to register before leaving or, send their payments by check via post at a later date. Mala issued receipts for all those who made payments on that day.

4. The Management Circle thanked Sharm Aboosally for her readiness in helping to undertake a series of press articles within a tight deadline. It was noted that this had got a good response by e-mail and post from the public - Kiran has monitored this response.

5. The participants were asked to do give their names, addresses and contact details for the record of participation in the meeting. In addition to this, those wishing to sign up for any of the 7 team areas of activities of the Network and also to indicate their interest in Befriending / Counseling activities for the future were asked to do so.

6. The Management Circle spoke of the planned activities already underway such as the promotional leaflet, and those on breast cancer (early awareness and treatment), and Chemotherapy for patients.

7. Fundraising ideas were discussed - and included an idea proposed by Lal on printing car stickers for sale to the public at Rs. 50.00 each. The meeting approved this idea.

8. The Management Circle noted it would follow up and notify participants and all other members regarding which teams they belonged to and what next steps were expected of them.

9. In response to a question, it was noted that members were not expected to attend regular meetings but would be expected to keep in touch with their respective Team Leaders on tasks assigned to them.

10. The Management Circle noted that a formal launch of Mithuruwela was planned for early March tentatively. This would launch the leaflet and web site of the Network.

11. Volunteers at the meeting signed up for different Activity areas or Teams which include the following; Translation, Publication & Production, Fundraising, Publicity Admin/Secretarial, Communications and IT, and Befriending / Counseling.

General Meeting February 12, 2005

Surviving cancer - with a little help from your friends

The Daily News featured this story on Rhyana Raheem, a cancer survivor and member of Mithuruwela's Management Circle. It was written by Sharm Aboosally. You can read it here:


http://www.dailynews.lk/2005/01/01/fea17.html

What Mithuruwela is About

Although cancer is the third largest cause of death in Sri Lanka, there is a serious dearth of information on this disease—particularly in the national languages, Sinhala and Tamil and particularly among the disadvantaged and marginalized who are most in need of help. To respond to this need, a group of cancer survivors and friends are launching Mithuruwela—the cancer support network – in January 2005.

Mithuruwela is a network of volunteers committed to providing a better understanding of cancer— early detection, treatment regimes and services, and other aspects like coping mechanisms as well as causes and prevention — by sharing experiences and knowledge. It 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 after effects.

Mithuruwela is seeking support for its activities through reaching out to like-minded volunteers who would help with its activities and in turn, be helped by the work they will choose to undertake.

Volunteers 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 is raising awareness on prevention; and fund raising. Donations of time and money would be gratefully accepted and utilised fully for the Network’s objectives. Mithuruwela will run primarily through volunteers in its first two years of existence and administrative costs will be kept low.

Working with a multi-disciplinary group of health professionals on their Advisory Circle, Mithuruwela will implement a comprehensive plan of action in 2005 beginning with the launch of the Network’s website, www.mithuruwela.com.
Other activities, to be implemented in several phases in 2005, includes:
• Forming key activity groups
• Producing and disseminating print and audio-visual information material in all three national languages
• Creating a network of trained ‘befrienders’
• Setting up a cancer hotline
• Initiating advocacy on cancer.

Mithuruwela will coordinate activities with existing government and private organisations for greatest outreach – its main focus would be 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.

Mithuruwela welcomes your suggestions and support. Please write to: email address: Mithuruwela@hotmail.com or visit website: www.mithuruwela.blogspot.com

So You Have Cancer?

By Sharm Aboosally

A cancer survivor, who has undergone three operations and radiation treatment, wants you to know that a diagnosis of cancer is not the end of the world, that there is hope and there is so much that can be done. Most importantly, there is nothing to hide.

When it comes to cancer --lawyer, wife and mother, Mala Thalayasingam has been through the mill. Most importantly, she feels that something good can come out of her experiences if she can reach others. This is why she and her husband joined Mithuruwela, the newly formed cancer support network for patients and caregivers. Having been through it all, she wants to share her experience in the hope it will help people to detect, prevent and go through treatment more easily than she did.

“I want people to know the treatment may be harsh – but people have survived and so can you. You must be positive,” Mala says. “A diagnosis of cancer is not the end of the world – you need to handle it rationally and consider all options. It is not your karma. It’s not inevitable that you die. There is nothing to hide. There is so much of hope and there is so much that can be done.”

This is from a survivor of three surgeries, which removed both breasts and her ovaries, and radiation treatment.

Mala’s mother was about 65 years old when she was diagnosed with breast cancer but sadly, by then, the cancer had also spread to her lymph nodes. “She went for treatment and was OK for a year but then secondaries (or a recurrence of cancer) were diagnosed in her brain and bone. She needed blood transfusions, which were from the blood bank and from private hospitals, and one transfusion was infected with the Hepatitis B virus. My mother died soon after from complications.”

About three weeks after this, Mala’s mother-in-law died from ovarian cancer. She died three months from her first diagnosis.

“I also had lots of lumps in my breasts but I never did a mammogram. I never got around to it,” Mala remembers. “Then, one morning in January 1999, I got up and I found a lump which I knew was different. We had just taken my son to university in September and since then, I was feeling rotten and everyone put it down to that. But when I found this lump, I knew it was different.”

Lobula Carcinoma in situ was the diagnosis. “Because of what had happened to my mother and because I was the eldest in the family, my family were deeply distressed. My surgeon, who had treated my mother and was terrified of this happening to me, was insistent on an immediate mastectomy and my family, who were all distraught, were for the fastest solution.

“Only I did not want it as lobula carcinoma in situ is a localised cancer, where the tumour can be removed, and is usually a pre-condition to malignant cancer. I did not want a mastectomy but in the end, we went ahead.”

Treatment included radiation and strong drugs. Three months after the operation, a mammogram showed shadows in her other breast, which was interpreted as cancer cells, and Mala underwent another mastectomy. A biopsy came back negative for malignant cancer – a mistake may have been made but it was too late for Mala.

Later, a liver test and a bone scan showed changes and secondaries were suspected. However, when Mala took the same reports to the United Kingdom, doctors dismissed the bone scan as not secondaries but a by-product of the mastectomies she underwent and said her liver damage was drug related and not malignant cancer.

Now, Mala has stopped all treatment and gets on with her life. But she advocates strong awareness and positive action – which she feels can help women avoid what she went through.

“Cancer meant death to us then. In my situation, my history led to what I feel was an over reaction in the treatment that was prescribed by doctors and endorsed by my family. I underwent radical surgery, which I feel was not needed -- I could have retained my breasts and monitored the lumps instead. As a patient, recently diagnosed as cancer, I couldn’t stand up to the pressure – I didn’t know what I could do and it was very hard to resist. From the diagnosis to the first mastectomy was about two weeks and I just didn’t have time to think about things. Everyone was overwhelmed.”

Mala says that she didn’t know what her options were and if she had more awareness of breast cancer and treatment, she could have challenged her doctors. Information at the right time can help the patient in deciding on treatment and on coping with the disease and side effects of treatment. Her husband feels the same and says, that even if Mala was too over-whelmed, he would have demanded a more informed treatment, had he known what could have been done.

“We were also very fearful – we had seen what had happened to our mothers and what they went through. Waiting for the reports were the worst part of the experience,” they said.

As a result of her experience and surgery, Mala has stiffness in her shoulders and hands. She gets depressed, especially when she had to wear prostheses. “Sometimes when I look in the mirror I cry – but I also joke about it. I always have a nagging fear that there could be secondaries – if I have a pain anywhere, my fear returns. My husband jokes that if I never had a primary how could I have a secondary?”

I am grateful that I have had an extremely loving and supportive husband and family and our church and church group, said Mala. “Having these people is a form of counselling. It’s so important to have this support, or I don’t know how I could have carried on.”

Mala says that there is a stigma – she knows many people who hide the fact that there is cancer diagnosed, which can be most difficult for the patient. Many people leave it too late to go to a doctor. Some women, though educated even, are shy to acknowledge gynaecological or breast cancers. It’s a difficult subject for people to acknowledge or come out with.

Mala had a friend who had found a lump and did nothing about it until Mala took her to her doctor. Her doctor’s first response was, “Why did you leave it so late?”

“Thankfully my immediate family are extremely supportive and very open about it,” said Mala. “They refer to my experiences and have no problem talking about it. Neither do I – I feel that by doing so, I can make people more aware about what can happen and what you should be aware of. Most important is for a woman to be aware and have regular check-ups.

Mala Touched Our Lives

By Sharm Aboosally

Mala was in her late teens when she came to work for my family. She had no immediate family of her own – her mother had run off with another man and left her in the care of her grandmother. Her father had married again and this poor girl was left to herself without parental love or guidance. She loved to talk to me – chatting about how she longed to see her mother and how people would describe her mother as being pretty and prosperous. She talked about her school days and how she went to a sewing school before finally coming to us.

Looking back, our house was indeed the final stage in this poor girl’s short life, although we didn’t know it then.

It started with a painless lump in her neck, which the doctor diagnosed as mumps. Mala was given medicine and asked to rest – within a week she seemed to be normal and was soon back at work, attending to her chores with a willingness and unselfishness, which was a rare quality. But, a week later another swelling appeared on the other side of her neck and we all knew that this could not be mumps. She had a full check up and this time the doctor’s verdict was that she be immediately entered into Sri Jayawardenapura hospital. On the same day, there was a call from the laboratory with her test results – it was cancer.

We kept it to ourselves, behaving normally, but she must have known because she became thoughtful.

Soon after, Mala was entered into hospital. She worshipped us and said goodbye to the children, who she had looked after so well. I told her to be brave and not give up, that she was only 21, with all the modern medicine available, she would be best looked after in the hospital and would have every chance. An uncle was brought down from her village and asked to keep us informed. We promised we would visit.

A couple of weeks later, we heard that there was no improvement and she was only getting worse. The killer disease had been in her system for over three years, killing her slowly. When the doctors thought there was no hope, a telegram was sent to the village and arrangements made to take her home as she had no more than a week to live.

Before she was taken to the village, she was brought to our house. She was dazed, not able to recognise anyone, not even the children who ran out to se her, those she had looked after with such care. She was already in another world.

We heard later that just two hours after being taken to her grandmother’s house, she had closed her eyes forever. Death had caught up with her in the prime of her life. But in her short time here, Mala had touched our lives and I will not forget that serene face.

The Topic of Cancer

Mithuruwela Cancer Support Network established
By Sharm Aboosally

Kumari is about 55 years, married with no children, a labourer and sole breadwinner, living in a hamlet near Kurunegala. She is a breast cancer patient and has had a mastectomy. And when she met volunteers from Mithruwela, 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 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 priest. She 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 your chemo schedule or how to alleviate side effects from it.

At a private hospital in Colombo, while waiting for a doctor, a Mithuruwela volunteer was approached by another patient – a man in his 40’s. He was about to undergo chemotherapy and he was fearful – he wanted to know: “What would 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.

A 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.

Cancer 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.

Rev. 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 talk to.

A young 37-year-old female, one of the founder members of Mithuruwela, remembers that her knees literally buckled when she heard she had ovarian cancer. She was in shock and tearful. “The first call is the hardest to make – it’s hard to tell people. When I learnt, 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 just cried.

“My doctors were not forthcoming – my husband and family were supportive but didn’t know enough about cancer to know how to deal with. 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.”

This 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 only tests only for a fraction of cancers.”

When 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.

“I was told at 6:30pm that I had cancer and at 9:30pm, another doctor told me my options. I was in shock – I couldn’t absorb everything and everything happened in a great hurry. Everything has to happen fast and it’s hard to cope. 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.

“I 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.”

For 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.

“We want to ensure that others benefit from our experiences – so that some good can come out of something bad,” says this cancer survivor and a founder member of Mithuruwela.

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.

“Now, 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. “I 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 I can.”

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.

People react differently to a diagnosis of cancer. Some patients don’t like to talk it – while others need to. Some need the facts glossed over – but most patients need information to make sense of what is happening. Many people don’t know how to react when they hear you have cancer – some stay away and don’t call, which can upsetting to the patient. It’s a lonely and terrible time and it’s important that the patient is not left alone and instead, surrounded by a loving, positive environment, Mithuruwela volunteers say.

Educating care givers is also an important part of cancer treatment and after care, volunteers say. “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. In 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 not an easily available option is Sri Lanka, volunteers say.

“As 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.”

Post-treatment 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 spokesman says.