By Brenda Kageni

Right from the time that Elizabeth Ragui was in hospital undergoing treatment for breast cancer, she knew that she wanted to do something about encouraging someone else with the disease. She particularly wanted to let more people know about how early detection could lead to a cure.

Wamalwa, Ida Odinga and Esther Passaris warm up before participating in a past breast cancer charity run. Photo: File

She wanted to learn and share more and, in fact, began talking about breast cancer right from her hospital bed. But it was only after going through training by a breast cancer volunteer group, Reach for Recovery South Africa, that she was able to put a finger on what exactly she wanted to do.

Embracing a concept similar to theirs, she would help bridge the gap both in awareness and in providing psychological support to breast cancer patients.

"God was so gracious to me, my lump was discovered early and I could afford medication. But there are those women in the village and elsewhere, who have no books or newspapers to read and those victims who do not know where to turn to next when diagnosed. I wanted to take the survivors and walk with them to the end."

Her organisation, Reach to Recovery Kenya, is a breast cancer support group that gives psychological support to breast cancer patients by visiting them in hospitals during and after treatment. They not only offer emotional support, but also practical information on getting through.

One of these practical approaches is a goody bag, which Ragui believes could be more aptly called a comfort bag, that contains literature on chemotherapy, radiotherapy, exercises after surgery, a cushion, an exercise block, a simple breast form and a special bra.

A gap to bridge

Ragui shows the special bra for breast cancer survivors. When a woman wears the bra, she feels as if she has a breast. It is sold at a cost of Sh200. Photos: Ann Kamoni/Standard

"We realised that there is a gap to be bridged after mastectomy. One needs more information than just treatment, for example, on what exercises she can do while still in hospital to relieve the discomfort in the arm. The hand will not be the same. Nobody will ever tell you that."

Ragui says the bag is used to hold the wound drain, while the cushion helps eliminate the hollowness that one is likely to feel in the chest after the loss of a breast. The exercise block helps eradicate unease in the arm. The breast form made of washable fibre disguises the image and is soft enough to use even for a wounded side.

"The first special bra is given free of charge and the rest offered at a subsidised price of Sh200. We sell it cheaply so that the woman in the village can get her five bras over time."

After the training, Ragui realised that most people did not have bras, as the old ones could no longer work on a single-breasted chest. The cheapest special bra in the market was going for Sh800 and, considering the high cost of cancer treatment, this was just burdensome especially for the low-income rural women that Ragui and her organisation were targeting.

"Sewing the old ones to make pockets is like an unpleasant reminder of what happened."

Ragui says that by God’s appointment, she bumped into a woman garment manufacturer who had in the past given fabric remnants for the goody bags. She agreed to make the special bras with a special pocket, giving the first pair free of charge as her way of contributing towards helping the women.

"When a woman wears the bra, she feels as if she has a breast. It motivates her so highly, you feel as if your breast has come back. I don’t remember I don’t have a breast until I go to take a shower."

The women do all this work with their own resources and time through contributing money to make the goody bags, train volunteers, travel and publish material, as they have not been able to receive any local or international help. A volunteer has to be a survivor who has been through treatment for at least two years, has recovered physically and emotionally and is ready to move on with life. The volunteer offers a woman a chance to talk freely to someone who has had a similar experience but has since resumed her normal everyday life.

"Many people die, not out of the disease, but out of depression, just like with HIV and Aids. The moment you are diagnosed, you just see death. You even begin writing your own eulogy. With counselling, especially from someone who has gone through it, you can take it more easily. If you have nobody to talk to, you are in a lot of trouble."

don’t count cost

Many of the women, including Ragui, are still under cancer medication and she wishes there would be more support, from the Government, from similar groups that want to chip in and do the work, and from people who can support the cancer campaign financially.

"The people who are doing this are already burdened, but they give out of an abundance of heart. We don’t count the cost because we see what differences that visit will make."

Ragui has come to appreciate what a Sh1,000 note can do. It can, for example, buy two kilogrammes of materials to make breast forms and cushions for about 60 women.

She wishes policy makers could concentrate on policies that would make easy the journey of cancer sufferers as often her creation of awareness is met by despair from people who know that they cannot afford the treatment even though they are sick.

"I feel bad creating awareness, knowing these people need help that I cannot give. I don’t want to create awareness to create fear and despair.

"I do it all the same for those who can afford treatment. Government should subsidise cancer drugs and accept that this is becoming a national disaster. The Government has refused to see the need. Many die on the line waiting for radiotherapy at Kenyatta National Hospital."

Last year’s figures from Kenyatta National Hospital show that breast cancer is the second leading cancer in the country which claimed 240 lives, after cervical cancer that had 447 deaths.

Creating awareness

Since Reach to Recovery Kenya was registered last year, it has not only been involved in supporting breast cancer survivors, but also in creating awareness and conducting screenings especially in the villages throughout the year.

Seventy per cent of breast cancer cases are discovered during awareness and screening campaigns and Ragui believes that if women went out of their way to know more about the disease and examine themselves, then the mortality rate would go down and happy families would be raised.

"If detected early, breast cancer is the easiest cancer to treat; but it also spreads very quickly. For a woman, it is the primary cancer, which if not arrested early, can spread elsewhere. When you go to a health facility, it is your right to have the doctor check your breast."

"Not all breast cancers have lumps so it is good to know your body very well. Understand your cycle and don’t treat yourself when you are unwell. You end up suppressing the symptoms and the cause is not treated," she advises.

Of concern have been the men and youth who skip awareness and screening campaigns since they believe they are not at risk. The organisation has started two groups, Breast Angels and Men Link to reach out to these two groups.

"We want to demystify that it is not an old persons’ disease. Last year I saw three women under 23 die. People need to speak out so that others can be helped. We do not talk because it is a very good thing or to gain popularity. We don’t want anyone to suffer thinking they are alone."