KAREN'S STORY

Women are the glue of any society and if you remove a single woman from the equation, that’s one woman too many and the fiber begins to disintegrate

Karen Nakawala

Cervical Cancer Survivor and Teal Sisters Founder

Age: 46

Stage 1-2b

LIFE BEFORE CANCER: Everyone knows that I am a busy body, almost always on my feet and wanting to get things done. I have always had a good team with me, be it for the Zambia Fashion Week, Zambian Women of the Year Awards, or when we are managing events…but am not the boss who sits leaving it to my team. I prefer to get down and dirty with everybody else. If its not any of the above, I’ll be flying off somewhere to attend a fashion event or hosting several events, attending television interviews about my work, hosting a TV show or my other passion which is radio. Before my diagnosis I worked almost everyday of the week with occasional quiet Saturdays spent at home with my youngest daughter Owami, because my oldest daughter, Mwiche, works in Livingstone. I also loved to play host at my house and so I would have my friends and family over when I could afford time off. That was my life.

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THE BEGINING: It was a cool Thursday in June and the date was the 27th. I was hosting the official opening of Medland Hospital with the Vice President, Mrs Inonge Mutukwa Wina as the Guest of Honor. Dressed in a beautiful boldly printed chitenge dress and my ever-present smile. Amongst the invited guests was my gynecologist’s husband, who walked up to me and asked why I hadn’t been to my checkups after numerous promises, *embarrassing!!, I know right*. This time I kept my promise and went to the hospital that very afternoon.  Pleasantries were done and straight to business, she asked me to get up onto the bed for the exam. I started bleeding on contact. She asked me if at all I had any pain, unusual bleeding, discharges or heavy menstrual bleeding? I did have an occasional dull back ache, sometimes I’d get bleeding in between my periods and that was it. She then suggested that we do a pap smear and that results would be back in in a week. A week later, she called and told me the results were in. I got there early evening and she told me the recommendation was for me to do a biopsy because of the abnormal cells. She immediately referred me to the cancer hospital for further investigations *dazed!*. I left the clinic and a bit lost. I remember parking the car and calling my big sister, Mrs Chilufya Phiri and broke the news to her amidst violent sobs. I got home and immediately called Dr Sharon Kapambwe who was in France at the time. She was very reassuring and instructed me to go to the University Teaching Hospital the very next day and so began the flurry of tests, poking, prodding and the rest of my life.

REACTION TO DIAGNOSIS: My initial reaction was more shock than anger. I felt like I was in an ice cube and watched my life whiz by. I was angry at myself for ignoring my health, for ignoring the red flags which I thought were nothing and not going for screening. I have two girls with the youngest being 9 at the time, I was scared there’ll be no one to look after them or love me the way I do, because in my mind I was dying. I was scared of losing the man that I loved, doubt ate at me, I didn’t think he was going to stick around and watch me die. I was scared of so many things but most of all, but my strongest feeling was anger towards myself, *How could you Karen?*

DISCLOSURE, REACTION AND SUPPORT SYSTEM: From the time of confirmed diagnosis at the Cancer Diseases Hospital to the time I started treatment, everything was happening so fast and I was in an almost robotic state as I went from scan, to X-Ray, to laboratories and all the in between sessions with my oncologist. I did not think about telling anyone except my partner. For some reason, I found it easier to disclose to him because of the nature of our relationship. What I wasn’t sure about was how he’d react. Surprisingly, all he did was hold me as I cried and reassured me that it was going to be ok. His words were “Honey, we will beat this together. Am not going anywhere.” I think he knew that was my biggest concern. He became my pillar of strength and held my hand through it all. I then told my two young sisters. One was living with me at the time.  I will never forget the look on their faces as they pretended to be strong. Two weeks into my therapy, my older daughter came for my birthday and organized a surprise dinner for me. I had just come from radiation and was tired. I had to pretend to be ok and no one had a clue what was going on. The next day is when I called both my daughters and sat them down to explain. I told the rest of my siblings and some of my very close family and friends after I had finished treatment. My family expressed shock whilst my friends took it well knowing very well that I needed them to be strong for me. The few people that were in during the entire process gave me the best support system. My colleagues at work only knew about it months later because I worked throughout my therapy. I only took time off after because my body was now very tired from the radiation, chemotherapy and brachytherapy. After disclosing to everyone, I got mixed reactions. Some where sympathetic, others happy that I pulled through whilst others were sorry. I still get these once in a while but all have nothing but encouraging words for me. 

TREATMENT JOURNEY AND CHALLENGES: My treatment journey, I suppose, was just like any other patient’s journey although I must state that I was lucky to have received the best of care not only from my family but the medical staff as well. This made my journey a lot easier. Of course it was laced with side effects and pain which caused lots of sleepless nights, loss of appetite, anxiety and sometimes paranoia. For two months, Monday to Friday, I woke up at 4am in order to be among the first to receive radiation. On days that I was getting chemotherapy, I spent the entire day at the hospital. All these were made bearable by the friendly staff and my Doctor who was always on hand to offer advice. For me, the most painful part of the treatment journey was brachytherapy, which landed me in hospital after 4 sessions but it was worth it.

COPING: One needs a good support system to be able to cope with such situations. You need people that will make the journey easier and not wear you down with worry and or negativity. Its already bad enough dealing with a cancer diagnosis on its own. One needs to develop a positive mindset and believe that it shall be well. It isn’t the easiest of things but it is necessary and can be achieved. I deliberately kept it to a small circle because I wasn’t very sure how others would react, so I took my time and actually prepared all those I disclosed to. It is a lot easier to develop coping mechanisms when you are positive about a situation.

POST CANCER TREATMENT: I have since realized that though am finished with the treatment, it certainly isn’t finished with me. The side effects are like scars and a constant reminder of the journey I’ve walked. I have to start learning and understanding my body all over again. We literally have a conversation every morning when an ache here or there reminds me that this is the new life that I have now. My life isn’t the same anymore. Am no longer Miss Busy Bee and have to pace myself. I still live my life as best as I can but there are things I have to cut down on like, how long I wear my high heels for *my secret obsession*, how long I can sit without having a back ache, how long I can be on my feet and so on. I have to watch what I eat and drink. I used to enjoy a glass of wine once in a while but decided to just stop altogether. I don’t go out as often as I would love to because I need my rest. However, I still live my best life *that is a must*.

TEAL SISTERS: After my treatment, I realized that I was preserved for a reason and that I needed to sound the alarm on cervical cancer so that we prevent as many women as possible from going through my experience. Cancer is a very lonely disease and many start to buckle at the point of diagnosis. Women are the glue of any society and if you remove a single woman from the equation, that’s one woman too many and the fiber begins to disintegrate. It was important and imperative for me to create a platform for women to discuss and learn about cervical cancer and that is how this health movement was born. We saw women going out in numbers to screen and who became advocates to their families, friends and colleagues. We are a proud registered non-profit organization now.

GOING FORWARD: I hope to be the bridge for women to get access to screening and treatment. I hope to sound the horn and keep educating women about the importance of early screening and also why young girls should get the HPV vaccine.

MESSAGE TO OTHER WOMEN: You need to go and get screened. Don’t wait for symptoms to set in before getting screened and that its always better to get screened when you are feeling well. Cervical Cancer is preventable and curable. Let us all work hard to eliminate cervical cancer, and believe me when I say, together we can. No woman should suffer from a disease that is treatable hence the importance of screening periodically. If by any chance you are found with pre cancer cells, they will treat them immediately. Screening will help detect early cancer.

With love from me to you,

Simply Karen.

KAREN NAKAWALA.