“When we walked through the corridors of KNH, people would not only stare but also give me a wide berth thinking I was contagious. It didn’t bother me because I was sure that I would be cured.”
Ronald was looking forward to joining Kabete Technical College in September of 2018 to study a course in Engineering. But in July of 2018, his left eye became constantly itchy. He used home-based remedies, thinking it was only an allergic reaction but the itch became worse and his eye started to swell causing his vision to become blurry. His father took him to Lion’s Eye hospital in Kikuyu and he was prescribed special lenses, which he wore for only four days. As the swelling became progressively worse, he sought a second opinion at another private eye hospital and was asked to do a CT scan.
The results indicated that Ronald had a growth from the nasal sinuses and it was finding an outlet through his left eye. He was referred to Kenyatta National Hospital (KNH) for a biopsy and was diagnosed with stage 2 Sinonasal Undifferentiated Carcinoma, also known as SUNC. SNUC is a rare cancer of the nasal cavity and/or paranasal sinuses.
Something interesting to note about his histology report, it indicates that he is 99 years old! Ronald laughs at this as he was only 19 at the time, his optimism is a true testament of his character. When asked why he says, “Because the medics could not believe that this type of cancer, common with much older people, would be diagnosed in a teenager.” He also mentions how grotesque his eye looked but he was adamant not to cover it up.
“When we walked through the corridors of KNH, people would not only stare but also give me a wide berth thinking I was contagious. It didn’t bother me because I was sure that I would be cured.”
The first thing his family did was seek help from the National Hospital Insurance Fund ( NHIF). Since his cancer is rare, the cost they received for his chemotherapy drugs was expensive( about Kshs 90,000 per cycle when NHIF was only catering for Kshs 13,000 per cycle). Worried about not completing his treatment, he confided in his cousin who referred him to Dr. Mbogo and Dr. Vijay at HCG-CCK Cancer Center. After additional scans and medical tests, the reports indicated that his cancer had moved to stage 3 but was still localized, meaning, it had not spread further. Ronald had to be put on treatment immediately to arrest the spread.
Ronald’s father, Patrick is a civil servant and Judy his mother is a housewife. Patrick being the sole breadwinner was already strained in meeting the family’s daily upkeep. He shakes his head as if lost for words when asked how he managed to pay for Ronald’s numerous laboratory tests.
“What do you do? You borrow, which we did, but it just wasn’t enough and we still had to do chemo. It was a trying time for all of us.” Patrick says.
Left without any choice, they started chemotherapy at MP Shah Hospital using the NHIF rebate and funds from a crowdfunding event Harambee. During Ronald’s second chemo, a Faraja volunteer approached him and his family and told them about Faraja and our free complementary therapies. Ronald’s father decided to ask about financial assistance and went ahead to fill the application forms without hesitation
“Faraja offered us support for the remaining 3 chemos. It has been such a relief; I cannot explain how grateful we are as a family.” Says Ronald’s dad.
Ronald is committed to complete all his treatments and be a witness to dispel the myths that cancer is a death sentence.
“I am grateful to Faraja for their support and to all those people who have supported our family in different ways. I want to educate people that cancer is treatable. One must remain positive, trust in God and not fear to seek medical treatment.”
“During my second chemo session, I shared with a friend the stress our lack of finances was causing us. She is the one that mentioned Faraja and urged me to seek assistance.”
In 2013, Fridah first felt a lump in her left breast, close to her nipple. She went to hospital and underwent a biopsy but the results were benign. She was however advised to consider having a second baby but was not told why. Since she was not ready to have another child, she chose to wait it out, hoping the lump would disappear on its own and it did. All was forgotten until she became pregnant in 2017.
The lump reappeared, seeming to be in competition with her growing baby as it hardened and her nipple became inverted. The situation worsened when she was 6 months pregnant and the tumour burst open, sending Fridah into a panic.
“Even though it was not painful, I knew, without a doubt that this lump was not innocent.” She says. During her prenatal clinic, the doctor was concerned about the history of the lump and the current open wound. It was then that they carried out further tests and she was diagnosed with stage two breast cancer. The doctors suggested that she undergoes a Cesarean Section so that they could, at the same time perform surgery on the breast to remove the tumour.
“I chose not to, because I did not want to heal two wounds and at the same time attend to a new born.”
She waited until four months after giving birth before commencing on chemotherapy treatment at Kenyatta National Hospital.
Prior to her diagnosis, Friday operated a small scale second hand clothes business in Nairobi City. She was then able to earn an income to pay for the treatments. But with a new born and the suffering the side effects of chemotherapy treatment, her business strained financially. Her husband, a Khat (Miraa )seller became the only source of income for their young family. Their house hold costs now included blood tests needed before chemo, transport to and from hospital, food and now formula for her baby since she was unable to breastfeed. Having exhausted her government provided NHIF cover ( National Hospital Insurance Fund), she became desolate and depressed.
“During my second chemo session, I shared with a friend the stress our lack of finances was causing us. She is the one that mentioned Faraja and urged me to seek assistance.”
Without hesitation, Fridah sought for Faraja’s contacts online, visited our office and spoke with Grace, our medical fund co-ordinator. After one month, she received the call that she says, gave her and her husband “A new lease of life”
“Grace called me and said Faraja would pay for my remaining 4 chemotherapy sessions. I was so excited because I had stopped treatment due to lack of funds. Lucky for us we resumed soon enough and I can say now all is well.”
Fridah is positive that everything shall turn out right and remains immensely relieved that the right diagnosis was done before the cancer had advanced.
“When people are sick every one becomes deaf. I am grateful that such organisations like Faraja exist to give hope to patients, especially those who are not financially stable.”
Fridah is a beneficiary of the Natalie Fund, a sub fund created within the Faraja Medical Support Fund, that financially assists young women with breast cancer in Kenya. Through the Natalie Fund, Fridah’s 4 chemotherapy sessions were paid for at a cost of Kshs 46,800.
Written by Karimi Gatimi. Edited by Jehan Abhayaratne
Jane, 36, was pregnant with her second child when she first noticed that her left nipple was inverted. She assumed that because of her pregnancy, it had something to do with her milk duct.
It was only after the birth of her baby that she realised something was amiss and the doctor insisted that she needed to have a mammogram and other tests done on her breasts. As if in agreement with the doctor, Jane’s newborn baby refused to breast feed from her left breast.
Four months after giving birth, Jane took the doctor’s advice and underwent tests at Kenyatta National Hospital ( Kenya’s largest referral hospital and only national radiotherapy centre).
She was in shock to learn that she had stage two breast cancer.
“I had no idea about cancer and I didn’t believe them, because I was not in any sort of pain. Besides, no one else in my family has ever had a cancer diagnosis.”
The doctor took time educating Jane on her condition. He also told her that it was curative but that she had to have immediate surgery done. The KSHS 100,000 surgery cost was prohibitive for Jane. She turned to her friends and family who held a mini fundraiser to support her treatment. She managed to have the surgery done at a mission hospital that operated on her at an affordable rate.
After the surgery, Jane was required to undergo simultaneous chemotherapy and radiotherapy. The little balance from the fundraising was exhausted and she could not afford to pay for radiotherapy.
It was during one of the chemotherapy sessions at Kenyatta that she shared her predicament with a fellow patient who informed her about Faraja. When she finally gained the courage to visit Faraja, she was at her wits end and had lost all hope.
“I kept wondering what would happen to my two children if my application did not succeed but I left it to God, I filled my form and left.”
After two weeks, while undergoing her third cycle of chemotherapy, she received a call from Faraja’s Patient Support Manager- Phillip. Faraja was going to pay for her radiotherapy treatment.
“To say that I was happy is an understatement. I was ecstatic. If it wasn’t for my chemo port, I would be dancing in the ward. Finally, I could complete my treatment and be with my family.”
Jane, who earlier on in this interview looked forlorn, suddenly looks up and takes a deep breath before speaking.
“I am going to come back and support Faraja in their work. What they have done for me, only God can reward them. But I’ll support whichever way, with whatever I can. One day, one time, I will come back to bless them too.”
Editor’s Note: Jane’s radiotherapy treatment wasfunded by the Natalie Fund, a sub fund created within the Faraja Medical Support Fund ( FMSF) to financially assist young mothers with breast cancer. To learn more about FMSF click here
Save for the whirling of the ceiling fan, the Faraja Cancer Support wellness centre is quiet. The attendants are paying rapt attention to Rodney Aries as he introduces a top as fascinating as its titled; Quantum Touch.
For a Monday morning, the gathering of therapists and new Faraja volunteers are vibrant. I scan the room and access the men and women from different nationalities, races, age groups and professions. It is my first day as a volunteer at Faraja Cancer Support Trust and I am eager to listen to the day’s speaker, notebook and pen in hand.
“Love is a universal vibration, a foundation of all healing.” Rodney says.
He knows what he is talking about. He is a survivor of lung cancer.
“I don’t subscribe to the attitude of aggression towards cancer. I did not fight it but rather, once I accepted, I did a lot of research to understand all my options for quality life and healing.” he further quips.
On the 22nd of January 2018, Faraja Cancer Support Trust invited all their volunteers and therapists to a start-of-the-year session. Like Rodney Aries, some of the volunteers are also cancer survivors, while others have had a loved one experience the painful lick of cancer. The rest of the volunteers offer their expertise simply as a means of giving back to the community.
The range of expertise in the room varies from graphic designers, reflexologists, nurses, writers, counsellors, nutritionists, holistic therapy practitioners, physical exercise therapists and me- a writer.
A cancer diagnosis is not just shocking to a patient but is also emotionally, physically and financially draining. While the doctors offer patients mainstream therapies like chemotherapy and radiotherapy, Faraja steps in to offer information, support groups and, something I learnt that day, complementary therapies.
“Complementary therapies ensures the wholesomeness of the mind and spirit. It allows the patient to accept their diagnosis and consequently their treatment process” Explains Dr Peter Rotich, a radiologist with HCG-CCK who was also one of the speaker’s of the day.
Towards the end of the session, the new volunteers had an opportunity to mingle and interact with the therapists and staff members who have been supporting Faraja’s journery of giving help, hope and life to children and adults with cancer in Kenya.
It is inspiring to learn about the difference that complementary therapies makes in the life of a cancer patient. Still, there is so much more to be done especially in creating awareness about the need for these free therapies and the existence of this wellness centre that opens its doors every weekday to patients and their care givers. I am ready for the challenge and look forward to my year of volunteering at Faraja.
Editor’s Note: Faith Karimi is a writer, publisher and skills development facilitator. She is married and blessed with three children
Daniel was only a year old in December 2015 when he developed a swelling above his upper lip, directly under the nose. His mother, Nancy Gachambi Njuguna, took him to Nyayo Ward Hospital in Elburgon where the family lives. The hospital referred Daniel to Nakuru Provincial General Hospital and after 2 week of running tests, the doctors decided to operate on Daniel. Following the surgery in January 2016, Helen was asked to take the tumor specimen to the Aga Khan Hospital in Nakuru for further testing to establish if the growth was cancerous. The results revealed that Daniel would require further treatment for cancer. The growth had been indicative of rhabdomyosarcoma (RMS).
RMS is a highly malignant soft tissue sarcorma that is common in children. The cancer develops in muscle cells and the immediate sign is a swelling that keeps growing bigger.
Daniel was further referred to the Moi Teaching and Referral Hospital (MTRH) where he was admitted. After preliminary tests, he was sent to the hospital’s Oncology Department and put on chemotherapy treatment. He would undergo 36 cycles of chemo starting February 2015, which was all paid for by NHIF. The doctors felt that the chemotherapy would be enough to get rid of the cancer and thus did not put Daniel on radiotherapy.
Fast forward to January 2017, Daniel developed another swelling on the neck and Nancy rushed him back to MTRH, fearing that the cancer had recurred. However, due to the doctor’s strike that was on-going then, Daniel could not access the necessary treatment and the Njuguna’s decided to try alternative hospitals. They first visited Kijabe Mission Hospital but could not afford the cash deposit needed for admission prior to surgery. The family then sought treatment at St. Mary’s Hospital in Lang’ata where Daniel had a biopsy done, which determined that he indeed had a recurrence. Nancy took the results and travelled with Daniel back to MTRH where the doctors in the Oncology Department scheduled another 36 sessions of chemotherapy in addition to which Daniel would have to undergo radiotherapy.
Being so young, Daniel needed to be put under anesthesia every time before undergoing radiotherapy. The family would thus incur extra costs for the anesthesiologist in addition to the actual radiotherapy fees. The family first visited the Aga Khan Hospital but upon getting the breakdown of the probable treatment bill, they quickly realized they could not afford treatment there.
Nancy then went to Kenyatta National Hospital seeking affordable treatment for Daniel. The doctors at Kenyatta suggested that Daniel should complete his chemotherapy first before proceeding to get radiotherapy. Within the two weeks that Daniel was admitted at KNH, he received 3 cycles of chemotherapy. In the meantime, Nancy was still in touch with the staff at the MTRH, with whom Faraja has a partnership committed to providing care and treatment for cancer patients.
The MTRH staff suggested that Nancy should bring Daniel to Faraja to seek assistance in paying for the radiotherapy. Nancy reached out to Phillip, Faraja’s Patient Support Manager. Faraja then offered to assist in paying part of the 30 sessions of radiotherapy that Daniel required including the cost of anaesthesia.
Nancy says her family has found much relief through the assistance
offered by Faraja especially considering the great financial constraint that her family has incurred since 2015. The constant moving from one town to another, hospital to hospital; seeking the best and most affordable treatment for Daniel has also taken a toll on Nancy who is 8 months pregnant.
Despite Daniel not having completed his treatment, his family is optimistic that he will make a full recovery . The staff at Faraja have become very fond of him and are always happy to see him toddle around the wellness center, looking for toys and crayons and off course an idle mobile phone to play with.
“We are taking it one step at a time but remain hopeful that Daniel will win this battle.” – Nancy
the ability to do something that frightens one.2. strength in the face of pain or grief.
Josephine Onchieku’s eyes are the first to greet you when you meet her. They speak with her and for her. The other things that you notice about her are how easily she laughs and the quiet confidence that comes across when she speaks. You’d think she is timid; she is far from that. Don’t mistake her gentleness for meekness. She knows her life will never be the same again after having been diagnosed with breast cancer in July 2016.
She and her family live a simple life in Kisii. Their small piece of land comfortably supports her husband and their three children.
As she narrates her story at the Faraja Cancer Trust offices, you can’t help but admire how she has taken her cancer diagnosis head on. She doesn’t hide the fact that she has undergone a mastectomy and is currently having chemotherapy.
“Mimi siogopi. I’m not afraid to show the other women my scars. I tell them that even though I may not have one breast, this has not stopped me from living my life,” she says. She points out that folks back in Kisii are more fearful of cancer than HIV/AIDS, and there are a lot of misconceptions surrounding the disease. “It is difficult to explain my journey to members of my family. They wonder why I have been in Nairobi for almost six months. Some even dare to say that I have run away but my husband is very supportive.”
Josephine’s journey began when she went to see a medical officer about a cancer screening exercise that had taken place in Kisii town, blissfully unaware of the lumps within her. The medical officer on examining her breast felt the presence of the lumps and referred her to Kisii Teaching and Referral Hospital ( KTRH). She was examined and was told to wait a few weeks for a “big clinic” that was coming to town . This was the free cancer screening that was being conducted by Faraja. The screening, she was told, was an extension of her “clinic”. Josephine remembers how eager she was that morning and was the fourth person to arrive at the Stadium. That is when she received her second confirmation of breast lumps. Fortunately for her, the lady examining her was a breast cancer survivor who was empathetic to Josephine’s plight and encouraged her.
“When the lady told me that I should not get stressed because she too had cancer at one time and had overcome it, there and then I purposed that I will get through this,” she recounts.
Josephine shared her news with her husband and her family, and she remembers how she was the one offering them encouragement and telling them not to worry and whatever will be, will be.
November 7th, 2016, is a landmark date for Josephine. This was the day that she underwent her mastectomy. Unfortunately, soon after this she, like many other Kenyans, fell victim to the nationwide doctors’ strike. She was forced to recuperate at home and without further treatment, hoping that the doctor’s strike would end soon. February 2017, another land mark day for Josephine, is when she received a phone call from Faraja, following up on her status. She was advised to come to Nairobi for chemotherapy and radiotherapy as her breast cancer was early stage and was treatable. A sense of hope and joy emanated from Josephine’s stomach as she packed her bags and said good bye to her young family. “Utarudi lini? When will you return?” asked her young son. “When I get better and I promise to return only when that happens.” She confidently retorted.
Faraja Cancer Support Trust with support from Nakumatt’s “Let’s Fight This Battle Together” campaign paid for 8 cycles of chemotherapy and 35 sessions of radiotherapy treatment in Nairobi. Her every smiling face and piercing eyes became a common feature along the corridors of cancer care Kenya. Josephine has also had the pleasure of expressing Faraja’s free complementary therapies including nutrition, exercise, reiki and our monthly breast cancer support group which meets every 4th Tuesday of every month. Shaira, Faraja’s Founding Trustee, caught up with her on the day she finished her radiotherapy and she joyfully quipped, “mimi niko sawa. I am ok and I feel strong! ”
Josephine is just one of the many beneficiaries of the LFTBT campaign. Other residents of Kisii town who presented suspicious cases were successfully treated at Oasis Medical Center in Kisii due to the doctor’s strike. Of all the cancer screenings Faraja has undertaken, Kisii County not only recorded the highest turnout (2,186 people in two days) but also had the highest number of men screened for both breast and prostate cancer (1070).
Watch Josephine’s video here
Valentine Mckenzie is a 4 years old girl from Western Kenya who is suffering from rhabdomyosacrcoma, a cancer made up of cells that normally develop into skeletal muscles. She is the first born daughter of 22 year old Helen who also has an 11 month old son. Helen lives with her parents Felistus and Jared Omusaba in Shanda, Kakamega County. Around mid June 2015, Felistus noticed a swelling under her granddaughter’s left ear. She thought it was a bee sting but the swelling grew bigger as days past. Felistus decided to seek medical assistance a few days later at a nearby dispensary and was immediately directed to Kakamega General Hospital. Although the swelling on Valentine’s left side had increased, she was not in pain and was still playful. Due to financial constraints, it took Valentine’s family one month to raise funds for further diagnostic treatment at the Kakamega General Hospital where they were referred to Kenya’s 2nd largest referral hospital the Moi Teaching and Referral Hospital (MTRH) in Eldoret. Through the help of well wishers and a local MP, they managed to pay for scans and a biopsy which confirmed that she had early stage rhabdomyosarcoma also known as RMS.
About 7 weeks into the development of an embryo, cells called rhabdomyoblasts (which will eventually form skeletal muscles) begin to form. These are the cells that can develop into RMS. Because this is a cancer of embryonal cells, it is much more common in children, although it does sometimes occur in adults.
Valentine was immediately put on chemotherapy treatment to shrink the tumour before she could undergo surgery. By her second chemotherapy cycle, the tumour had significantly shrunk and her appetite increased. After 6 cycles of chemotherapy, Valentine was discharged from the hospital in December of 2016 but still had to attend weekly clinics. Her consequent surgery was scheduled for May 2017 which was paid for by NHIF. However when Felistus was notified by the doctors atMTRH that Valentine needed radiotherapy treatment in Nairobi, she was crest fallen as her family had already exhausted all their funds and could not afford the bus fare let alone 30 weeks of radiotherapy. Thanks to the partnership that Faraja has with MTRH, Valentine’s doctors contacted Faraja’s Patient Support Manager Phillip for review and possible financial assistance.
Through funds raised during the 2016 “Wigs and Turbans Gala Dinner”, Faraja is not only paying for radiotherapy treatment but also catering for accommodation costs in Nairobi for Valentine and her grandmother. Valentine is currently undergoing 6 weeks of radiotherapy, after which she will have to go back to MTRH for review and possibly, more chemotherapy.
These are just one of the many reasons Faraja Cancer Support Trust is excited to open a new outreach center at MTRH to expedite financial assistance cases and offer free complementary therapies to cancer patients and their care givers. By the time Felistus arrived in Nairobi she had high levels of stress and anxiety and hardly spoke. After talking to our counselors, she is better equipped for the ever winding journey of Valentine’s treatment. Valentine has also had art therapy sessions with our crafts for cure volunteers in a bid to get her to open up as the rigorous cancer treatment has left her sullen and withdrawn.
The Omusabi family can already see a marked improvement in Valentine and are looking forward to her speedy and full recovery. Felistus says she will patiently continue to support her granddaughter through all the treatment she needs and even afterwards to ensure full recovery. Her greatest desire is to see Valentine regain her health and go on to attend school and enjoying her childhood.
Editor’s Notes: Wigs and Turbans will host its annual gala dinner on the 4th of November 2017 at the Two Rivers Mall. All proceeds from the dinner go towards supporting children with cancer such as Valentine. To sponsor the event or participate, kindly contact Tibaga Gacheru on 0705 699 411 or email email@example.com
Written by Daisy Kinuthia
Picture courtesy of Sly D Photography
Once you meet Waithera Kihanya you never forget her. It’s her energy, confidence and bubbliness that live an impression on you. For a six-year-old, she is strength personified. Though life took a turn for her and her parents in September 2016 when she started complaining about severe chest pain.
Her mother, Theresia Kihanya, testifies that her daughter had rarely fallen in and the sudden pain that she started getting next to her ribs surprised her. Though, it was after Waithera started passing blood in her urine was a visit to the local dispensary warranted. This visit didn’t reveal much, they were prescribed with painkillers, and they went back to their farm that is nestled in the farmlands of Nyandarua Country.
A month later, Waithera was in agony again, and no amount of medicine could abate the pain. On close scrutiny, Theresia noticed a lump in the rib area. This anomaly forced them to go to the North Kinagop Catholic Hospital where x-rays of Waithera were taken. A return visit to the hospital never happened, as Waithera’s parents were advised to see private doctors in Nakuru. Julius Mwaria, Waithera’s father, wasted no time in heeding this advice and headed off with his first -born to Nakuru for more consultations. Theresia was left with the responsibility of looking after the farm and her 13 month old baby, Sammy, whom she was still nursing. The Kihanya family were oblivious of the long and unpredictable journey that lay ahead.
It was after they were referred to the Moi Referral and Teaching Hospital, in Eldoret that it was discovered that Waithera had nefroblastoma, a kidney cancer that mainly affects children. Moi Referral as it is commonly known is the country’s second referral facility in the country, and for the next few months, this was going to be home for Waithera.
Two hundred kilometres away, Theresia couldn’t believe the news Julius broke to her. This was not a phone call that any mother cares to receive. Theresia admits that she struggled to believe the news, opting not to share this with anyone and choosing to hold onto to her faith and live her life as normal. “If I let this news bother me, then I would have been of no use to Theresia or the rest of my family. I needed to be strong for Theresia,” she says.
Waithera began her chemotherapy treatment and was scheduled for surgery to remove the affected kidney. Unfortunately, on the day she way to undergo the operation, the doctors’ strike that paralysed the country’s public health system for 100 days commenced. There were four other children at the children’s ward who were also to undergo the same procedure, but alas this was not the case. The waiting game began. Despite this, a strong friendship was born among these four young cancer fighters.
Theresia and Julius divided their time between their farm and hospital, taking Waithera through 25 chemotherapy sessions. Plus, they also received support from relatives who lived in Eldoret. But it was agonising waiting for the surgery to be scheduled. This eventually took place in January 2017, but because of the strike, it took another two months before Waithera was discharged from the hospital.
It was while at the hospital that the family were informed about Faraja Cancer Support Trust. Waithera’s 12 sessions of radiotherapy and accommodation was catered for by funds from the Wigs and Turbans annual dinner held on November 5th 2016 that raised 1million Kenya shillings for children’s cancer. Her energy and personality could not be missed. She is acutely aware of the journey that she is on, though blissfully ignorant of the consequences of fighting a disease that has claimed many. When I asked, what happened to her hair, she looked at me with the large brown eyes and shouted, ‘chemo!’ and she proceeded to show off her well-rounded scalp.
Waithera’s parents acknowledge that their daughter has a fighting spirit that has seen her through treatment. Her energy is unabated even after her radiotherapy sessions, and her father beams at this as he informs me his daughter’s personality is the spitting image of his.
You can’t help but admire this little bundle of energy who seems oblivious to the fact that at a very early age, she has led her family through a battle that even adults fear to tread.
Editor’s Note: Faraja is happy to announce that this year, we will partner with Wigs and Turbans again for the 2nd annual dinner to be held on Saturday 4th of November 2017. Details will be posted on our social media platforms. Funds raised will go towards creating a special fund within Faraja’s Medical Fund for Children with Cancer.
By Daisy Kinuthia.
The news of a cancer diagnosis is hard not only for the patient but also their family and friends. Being a caregiver means you have to step in and be the source of support for the patient as they absorb the shock and even more as they go through their treatment. The needs of the patient have to come first. Friends and family need to step in to assist in various ways including decision making, seeking a second opinion, identifying the best hospital to seek treatment and even putting funds together. When my sister was diagnosed with breast cancer in November 2015, I felt thrust into the urgency of providing her with all the necessary support. I did not get the chance to process my feelings at the time because we had to do what needed to be done. It is the same for many others who find themselves in the position of having to be the primary carer for a loved one.
Considering that cancer cases are on the rise and that cancer does not discriminate, it is of great importance for all of us be educated on caregiving just in case we are faced with the possibility of providing care for a family member or friend. As the life of the cancer patient changes, your life as the caregiver changes too. You have to adjust your routine to fit into that of the patient. Besides being present for doctor’s appointments and treatment sessions such as chemotherapy and radiation, you have to prepare for emergency situations such as when the patient needs to be rushed to the hospital or when they feel overwhelmed emotionally and need you to pay extra attention to them.
There are various ways to care for a cancer patient. Different patients will obviously require different levels of care and attention, but one of the fundamental ways is to be present to listen and have them share their feelings and ideas about their experience along the treatment journey. You will also provide physical nursing care as instructed by the doctors and nurses. I remember when my sister was discharged from the hospital after surgery with a drain attached to her left arm. I had to empty and record the amount of fluid at the same time every day. Although we had attended a physiotherapy session in which we were instructed on how to care for the drainage container, it was still intimidating to have to do it for the next ten days. However, with each passing day as a caregiver, you gain clarity and become more in tune with the new role and can provide care with greater confidence.
The primary caregiver also helps with the personal care of the patient regarding hygiene and feeding. With treatment side effects such as reduced appetite, you have to be present to ensure that the patient is eating well every few hours. The patient may no longer manage to do tasks such as cleaning, grocery shopping or caring for their children, with which you have to assist. Essentially, you are the main support system for the patient. Caregiving involves seeing what the patient needs and assisting them in meeting their needs. You may not have the ability to meet their emotional needs for which they will need professional help, and as a caregiver, you need to encourage the patient to go for counselling. Remember to be patient with their journey because they may not be willing to go for counselling at the beginning. You need to pay extra attention on how the patient is progressing to provide clear information at every doctor’s appointment. Similarly, you have to be attentive to the doctor’s advice and instructions and assist the patient in following what the doctor says closely and accurately. You will also be the one to ask the doctor any questions that the patient is not able to ask or that provide more information on the treatment process.
Being a caregiver can be overwhelming, especially when you have no extra assistance from other people. You may not get enough time to care for yourself especially emotionally. You will feel various emotions such as sadness and anger at the situation and how much your life has been disrupted. You may also feel a sense of grief for your loved one’s health or even guilt from feeling that you aren’t helping the patient enough, or that you are healthy as your loved one is suffering. It is essential that you care for yourself to be in the right frame of mind to care for the patient. Thus, caregivers should seek emotional help too and talk about their feelings. Identify friends and family members that you can talk to regularly just to ensure that you do not suppress your emotions and feelings. Be willing to admit when you are overwhelmed and accept the help that others will offer to you. Importantly also, you need to learn to be patient and understanding when the patient expresses fear, worry or anger at you, and not take it personally. Do not be afraid to ask others for help in doing various tasks such as cooking, caring for children, doing grocery shopping, cleaning, and going to doctor’s appointments.
Both you and the patient can engage in relaxing activities when their treatment schedule allows. You may go for a walk, watch a nice movie, read or even attend support group meetings. The caregiver needs to attend support group meetings as well, where you will meet others in the same situation and openly talk about your feelings and experience as well as learn how to care for the patient better. As the patient goes through the treatment process, the carer needs to keep an attitude of hope and positivity from which the patient will feed off. Beyond treatment, you will have to walk with the patient through their recovery process as you gradually encourage them to regain their independence.
All in all, being a caregiver is a challenging but equally rewarding endeavour. Knowing that you have assisted in making another person’s life comfortable and their situation more bearable during their difficult journey battling cancer is worth every moment.
One thing you learn about the cancer journey is that no two experiences are entirely the same. There are many faces to this journey, many stories, challenges, and triumphs, with each patient fighting this illness in the way that they know best.
Olifa Lusalia’s anchored faith fuels her fight against a cancerous brain tumour that was diagnosed in July 2016. Positivity and spiritual encouragement make for her story of survival. This mother of six children is the main breadwinner of her family, employed as a domestic worker here in Nairobi and despite the physical, mental and emotional battle that she is undergoing, she is doggedly determined to make sure her children live a better life. Cancer is not going to deter that.
Back in 2009, Olifa started having headaches, and for her, they were just ordinary headaches which she treated with paracetamol. She endured this until 2013 when their severity increased.
“One side of my head felt like it was boiling,” she recounts, “Every time I bent down, or when I was stressed, my head felt like it was on fire! It was only until last year that I decided that I should get medical advice.”
Tests at the Kijabe Hospital showed that there was nothing conclusive, but Olifa remembers telling the medical staff that something was amiss. “Whatever painkillers I was being given weren’t working. My head felt like it had a hot sufuria (saucepan) inside.”
Unable to diagnose what was wrong with her, the Kijabe team recommended she get a head-scan and return with her results so that she could see a surgeon. She was not the only one waiting to see the surgeon, and as she was waiting to secure an appointment, and it was the medical staff, not the doctor who broke the news of the tumour to her.
As Olifa recounts the events, she wipes away tears that take her back to that moment. I avoid eye contact and swallow hard, remembering my journey.
Like many other cancer patients, once the shock settles in, then the hard reality of the expenses soon follows. “If getting twenty thousand shillings for the scan was hard enough to get, how I was going to cover the cost of treatment?” she recalls asking. “I remember telling God, ‘If you can reveal this sickness, then you know how I can be treated’,”
The month of July was spent trying to get a medical appointment at Kijabe Hospital, but this seemed to be an arduous task. It was only through the intervention of her employer who suggested that she moves to the M.P. Shah Hospital in Nairobi to get treatment. Olifa smiles as she tells me that she had never imagined that she would walk into such her hospital. For Olifa, a private hospital is a dream. It was outside her lane. For me, this was a reminder of how we take medical insurance for granted. It’s not a given for many in Kenya. The doctors at the MP Shah recommended immediate surgery for her, something that she readily agreed to without hesitation. This shocked her employer who couldn’t understand where she was getting this resolve. Olifa’s resolve equally befuddled her husband and eldest son.
‘My primary concern at that time was to get surgery, recover and get back to work. My family was dependent on my income,” she says. “If God had opened a door for me to be treated, who was I to stand in the way of it?”
Olifa carries her life on her face. Her chocolate complexion is complimented by a short and neat afro that has a turf of grey hair that’s become more prominent following her surgery. As she took me on her journey, my faith in humanity strengthens once again. There are lots of good people, good and selfless people in this world and Olifa’s employers, the Shahs, are some of those people. Having worked for them for 14 years, Olifa was taken to be a member of their family. They spared no expense in ensuring that she got whatever treatment she required.
In August 2016, Olifa and her son were in New Delhi, India at the Apollo Hospital where she underwent surgery. There was no time to enjoy the moment of being in India; it was treatment or burst. As I listened to her, I’m impressed by how this whole process unfazed but, emboldened her. She tells me that they only time she was anxious was during her first flying experience, she remembers clutching herself during take-off and only settling down once they had reached cruising altitude.
Doctors had told her that she stood the risk of losing her eyesight in one of her eyes and that she would be in ICU for three days following the surgery. Neither of those happened! She spent six hours in ICU and has not lost her vision. After three weeks in the hospital, her frail form had regained its shape, the swollen legs shrunk, and the puffy face that is immortalised in her passport is no more. As she tells me this, she reaches out for a phone and shows me the photo of her biodata page and promptly proceeds to share another of the lighter moments of this journey.
“We were initially meant to spend six weeks in India so that I can have follow-up and radiotherapy, but this was going to be too expensive for the Shah’s. We then decided to come back to Kenya and continue with the treatment here,” she says. “I had made such an improvement that the immigration officers in India refused to let me leave their country. They didn’t believe the person in the photo, and the person in front of them was the same. It was when we showed them my Kenyan ID did they believe that I was the same person.”
With the surgery now complete, it was time for Olifa and the Shah’s to go separate ways. The Shah’s could now emigrate to Australia, having seen that Olifa was on the road to recovery. In spite being thousands of miles away, they have ensured that she continues with her radiotherapy treatment at Cancer Care Kenya. Olifa’s journey is far from over. As she doesn’t have any work now, she occasionally walks over ten kilometres either way from Uthiru to Parklands, for her radiotherapy sessions at the hospital and for her complimentary treatment appointments at the Faraja Cancer Support Trust’s wellness centre, more proof of her formidable strength.
Despite not having to worry about treatment, getting food to compliment her medication and getting work are her other battles. She tells me that on a bad day she survives only on water. Her voice becomes heavy and gets punctuated with sniffles and it resonates with both gratitude and worry. She has children to school and a home to feed. There is no anger at her situation, nor at her husband’s inability to support the family. She believes somehow things will work out for the Lusalia family. She holds on to her belief that God’s on her side.
“I pray for the Shah’s daily and ask for every blessing on their household, and I’m truly grateful for them,” she says. “And for anyone who is battling with cancer, hold onto your God or your faith and don’t lose hope. Look at how far I have come!”
Olifa Lusalia was interviewed by Kevin Mwachiro.