Cancer patient organisations and support groups, perform vital services connecting with, supporting, and advocating for cancer patients while providing essential funds for research and insight into patients' experiences. The COVID-19 global pandemic has quite literally ravaged all of our lives, but this is especially so for cancer patients.
As the world observes the breast cancer awareness month, this October, we talked to breast cancer support groups who tell us why sufferers need all our care and support more at this period.
Lady Hope Wellness Institute, Nairobi
Founder: Veronica Mwangi, 52
Veronica Mwangi, founder Lady Hope Wellness ( right) with Florence Kamene, one of breast cancer patients. At the centre, they make mats and other Do It Yourself products PHOTO|POOL
"In 2009, I founded Lady Hope Wellness Institute as a support group for cancer patients. Initially, I journeyed with those suffering from cervical cancer but admitted others, both men and women, along the way. Over 90 percent of our members are women, mostly suffering from breast and cervical cancer."
"Stress is the number one enemy when it comes to cancer patients. With the Covid-19 pandemic, their stress levels have increased. This has been due to the high cost of living, food, and transport costs to and from hospitals not to mention medication fees. The restriction of movements means that patients can no longer mingle freely and get forums to vent out their fears. At Lady Hope, the numbers that come for the support group meetings have drastically whittled down. Also, at the accommodation facility, we have reduced numbers that we take in at particular times. In January, we had close to 100 members but we are now at 82 having lost most of our members during this coronavirus period.
The cancer patients are at a high-risk group due to their low immunity, hence they feel unwelcome in gatherings. The worst-hit is our hospitalised patients who are not allowed, visitors. Their isolation mostly leads to hopelessness, feeling unworthy, and giving up.
For instance, when one of our breast cancer members was due for surgery in July, there was a delay as she had to undertake a COVID test before admission. We couldn't get a place to do the test for free. We tried different facilities but had no way out. We had to look for the Sh5000 needed. On admission she had the fear of contracting it from the hospital, even from her surgeon, it was a stressful time for her coupled with the fact that we couldn't visit. The stress everyone is feeling during this Covid-19 season is not comparable to what the cancer patients are going through."
"I grew up in a small settlement scheme called Sagana in Nyeri County. At the only missionary hospital, the doctors faced a language barrier. When women with reproductive health issues visited the hospital, they would say, "nimegonjeka huko kwenu" and the doctors would be like, "where?" I heard it from the boys. They used to joke a lot about it."
After a 12 year-long career in meteorology, my husband and I partnered with a medical doctor and set up a laboratory. "I used to do administration work and while at it, I interacted with women a lot. I discovered that most came there because they did not want to go to the gynaecologists. They were afraid to talk about cancer. When I visited Kenyatta National Hospital (KNH) cancer ward, most of the women confessed that they had not told about families of their sickness. Those who were ready to open up were those in the final stages. So, I started accompanying the women back to their homes to talk to their families. Having lost a close relative to cancer and seeing how it affected my family, I felt the need to start the institute."
"Lady Hope Wellness Institute runs a three-roomed accommodation facility in Kihingo area off Peponi Road, Nairobi. We accommodate patients seeking treatment at KNH but who do not have a place to stay.
Some of them come feeling rejected and downcast. You will find that one had even disposed of their sim card because nobody calls them and when they call, people think that all they want is money. So, we offer them counseling first then accommodation, food, and fare.
The centre is like a home to the patients. They spend time learning empowering skills such as making mats, carpets, and beadwork. If one of them has a skill, they also teach others. For psychosocial support, we hold group activities in a nearby church due to the limited space at the facility. The meetings are held bi-weekly and attended by other cancer patients recuperating from their homes for moral and emotional support."
"Lack of funds is a big challenge because of the costs associated with the treatment of cancer. When I started the centre, I had to support patients including paying for their NHIF from my pocket. Thankfully, we now have a few people supporting our operations and we also hold cancer awareness and fundraising walks. However, we need more financial support and volunteers. Currently, we have 10 volunteers. We appreciate learning from people's talents, gifts, and skills."
For Food and monetary donations Lady Hope Wellness Institute Mpesa, Paybill number is 651969 .
Oasis of Life Support Group, Embu
Founder: Carole Njagi, 27
"There is a trend of late diagnosis of breast cancer in the remote areas due to lack of information."
Oasis of Hope group members open day with cancer stakeholders. PHOTO| POOL
"In 2002, I was diagnosed with breast cancer. I battled it for five years and was declared cancer-free. My experience while undertaking treatment fostered me to found the support group. I felt that my experience was an eye-opener on the importance of early diagnosis. I also wanted to encourage those fighting the disease.
We currently have a membership of 70 cancer patients with the majority being breast cancer. Whenever we hold our meetings, we have new members but that has not happened this year because our meeting in March was postponed due to the Covid-19 pandemic. What we are currently doing is reaching out to them on the phone or social media platforms. Also, Oasis of Life is a close-knit family so the members check-up and encourage one another. Our volunteer counselors offer psychological support to the members.
We hold meetings quarterly and deal with screenings, training, creating awareness, and patient support.
Since we started, we have had quite a few donors coming on board to support our members with prosthesis bras, reading materials, medications, and painkillers. However, for most members, lack of funds remains their biggest struggle. And especially now because of the financial strains caused by the pandemic."
To reach out, check Oasis of Life on Facebook
Second Chances Foundation, Nairobi
"Being there to offer moral support to breast cancer patients can mean more than any financial support."
Waithera Kabiru, Founder Second Chances Foundation, a support group for breast cancer patients. PHOTO| POOL
"We hold annual fundraising events but due to the Covid- 19 pandemic, we are yet to hold one and we are considering a virtual event before the end of the year.
We launched the foundation from a personal need. In 2012, I was diagnosed with stage three breast cancer and had to go through several treatments. They were costly and at one point, I had to request help from my family and friends.
Some of my close friends conducted a fundraising event that raised over Sh3 million. We then started thinking of where to channel the excess funds and the spirit of togetherness that was exhibited. That is how the organisation was birthed with six of my women friends. Today we are eight women, all who have been affected by cancer in one way or another running the organisation."
How the support group operates
"Providing financial support for cancer patients is a small part of what we do because fundraising is very intense so we select one or two cases per year and contribute to their treatment.
The most important part of what we do is cancer advocacy and providing hope to cancer patients. Having experienced it firsthand, I share my experiences, listen, refer patients to oncologists and give them hope. With cancer treatment, I have since discovered that you need to have the right mindset and positive attitude through the chemotherapy process.
Since we started six years ago, we have supported at least 100 cancer patients with finances towards their medications, food donations, transport expenses, and counseling services. They are referred to us by our patron, oncologists, and people who know about our work."
We always feel like we are not doing enough because we are financially constrained yet many people need our help. Also, I and other foundation members have diverse careers on a full-time basis so time is never enough. We need volunteers to reach out to cancer patients, manage our social media pages, and organise fund drives."
To support: Second Chances Foundation, MPESA Paybill number is 321950
We have lost many patients at this time
Ushindi Cancer Support Group
Jane Frances , Secretary, Cancer Survivors Association and Founder
Jane Frances has battled breast cancer for sometime. Here she is with some cancer patients from informal settlements of Kangemi, Kawangware, Riruta, Dagoretti North and South areas as they received donations from Consolata Shrine church small Christian community and our LADY of Fatima in Nairobi.
"When the Covid- 19 pandemic hit the country, my routine drastically changed. Before, I would be attending to my herbs farm or making deliveries. Now, my typical days involves collecting food donations from well-wishers then delivering them to cancer patients.
I have been battling triple-negative breast cancer disease for the past six years with supplements as mine is a rare type of cancer that has no treatment. My doctors say that I am in remission.
When I was diagnosed with cancer, I started looking for women who had the same diagnosis. We formed a support group and we meet once a month but because we are just a few of us, I decided to form the cancer information support network. The network brings together patients, oncologists, and the various support groups across the country. Before the pandemic, we used to meet at Aga Khan Hospital but with quarantine, people were asked to stay home.
Then, the distress calls started. Some wanted food, while other patients needed financial support to access treatment and medications.
The past few months have been very tough for most cancer patients. The treatment in itself is very expensive and then top it with the economic crisis and job loss. It is tough! As we talk, I am from delivering non-perishables to some cancer patients. I have to keep lobbying my friends and well-wishers for support because if I don't, some of our members will succumb to hunger.
Accessing treatment has also been a great challenge for most cancer patients. In March, we had cases of hospitals refusing to attend to cancer patients for fear of contracting coronavirus. Even for the patients themselves, it has been difficult because they are among the vulnerable groups. We have lost many patients while others have their immunity weakened and are battling recurring metastasis. We are in constant need of finance, and food donations as we are supporting about 200 cancer patients within Nairobi."
To support, Ushindi Cancer Support Group Paybill is 514422.
