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.