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ONE ON ONE WITH DR. WAFULA NALWA, THE CARDIOLOGIST

Relax Jackie, it’s Just A Lump; Breast cancer

My name is Jackie. I am a 52 year old mother of three wonderful boys; the eldest, our family chef, is 21 and he is in his 3rd year of collage studying catering. The second born who in a way is taller than his elder brother is in form 3 and from what I hear he is impressing on the basketball court. My youngest son, Oliver, only 9 is the joy of the family, so young yet so talented; he can never seem to stop dancing and making jokes. My children like all other mothers out there are my biggest source happiness.

Michael, my husband and father of my children, has been, since the first day we met, back in ’98, my pillar of strength. He has been by my side, like he promised at the altar, through every moment of my life. We have been a team, a strong one for that matter. They say men are unable to multitask but I wouldn’t say that about my husband. His ability to juggle multiple issues at a time has always mesmerized me. Mike works as a civil servant and at the same time, a devoted man of the God. He is not only father to our three children, but also to his congregants. As if that is not enough, when life showed me its claws and I was unable to play my part in the team, he not only took over my roles but also wholeheartedly took care of my every need.

I am a teacher by profession. A job I have enjoyed and cherished since I was a young girl of 24 years. It isn’t the most paying of jobs but the fulfillment I get seeing those young children learn to read, write and ultimately pass their KCPE is worth every struggle. The joy I get whenever I meet one of them all grown up pursuing different passions in life is inexplicable.

Teaching was my passion photo curtesy

To cut the long story short, I was having a relatively comfortable life that I really enjoyed and hoped for a bright future when suddenly Cancer took it all away.

Breast Cancer changed my life

Looking back through the past 1 month, during which I have been confined to this hospital, imprisoned and chained to this oxygen tank, I can barely believe that before all this I had never before been admitted to any hospital save for the joyous moments of delivering my babies. I was vibrant, energetic and, believe it or not, loud. Now I can barely finish a sentence without stopping every few words to catch my breath. I have learnt, in the past few weeks to cherish every little positive thing that comes my way. Every time I go a little longer off oxygen before I start gasping for breath, I celebrate and my hope for going back to my children grows a bit more. The day the doctors changed me from a facemask to using these nasal prongs for my oxygen felt like Independence Day. At least I can sleep comfortably and I can finish my meal while it is still hot because I don’t have to stop midway to take a puff of oxygen.

But every time the doctors come for their rounds and discuss my case, they leave me a little broken, sometimes they give me hope they encourage me to breath and try stay off oxygen for as long as I can. However, most of the time, especially when a new test result or imaging has been done and they are discussing the result, it crushes me. I need not understand the medical gibberish they say, the sheer look in their eyes and the stolen glances towards me say it all. The question is whether or not I will let them discourage me, and the answer is no. I have fought this cancer since it was just a lump in my breast and the mere fact that it has decided to go after my lung will not scare me.

Lump in my Breast

I wish I knew what I know now back in late 2018 when I felt a lump in my right breast. If only I had seen my future even for a microsecond and seen myself confined to a chair with tubes getting in and out of me, if only I had seen the trouble and misery I was going to put my husband through, with him having to bathe me and change my diapers… If only I could predict that I would go weeks without seeing my beloved last born… If I were to feel the fear I now have that I may not be there when my second born son plays basketball for his country, then I would take that lump seriously. At the moment I only wish I could turn back time and go back to the very first day I felt that small lump that I dismissed as “hormonal changes normal for us women!”

A few moths later and the hormonal lump is not going away, in fact now it has become slightly bigger and my nipple is retracting weirdly into my breast. It was at this point that I told the love of my life what I was experiencing. But he is not a doctor, is he? He asked me if it was painful and I said no. We slept soundly. After all, isn’t it in African DNA to go to the hospital when there is pain, I had no pain, and therefore it couldn’t be serious, could it?

Now my nipple was retracting weirdly into my breast

Mastectomy

A few days passed and as Michael, my husband was attending a funeral in the local area, he heard a doctor explain the symptoms of breast cancer which had claimed the life of the woman who was being buried, they were textbook to what I was having back at home. He swung into action. He took the doctors number and within a few weeks my breast had been removed.

The news was shocking. I had had some time to digest the possibilities and I had read up some information online from the time my husband told me it could be cancer of the breast to the time I met Dr. Gatura, the brilliant surgeon who operated on me. The first thing they did was take images of my breasts and X-rays of my chest to see if it had spread. Luckily for me, it hadn’t! next was to take a piece of flesh from the mass in my breast and sent it to a lab in Nairobi, they called it a biopsy. The results came within a week and there and then Dr. Gatura decided that he was going to remove my entire right breast. I had many questions running; I had my doubts. What would I look like without one breast? What would people say? Will my husband see me the same way? Does it have to be cancer? Are you sure, daktari, that it’s not just hormones?

within a couple of weeks my breast had been removed

Nonetheless, I was not ignorant I knew what cancer meant and as scared as I was, I signed the consent form and just like that, one of my body parts was gone. I was officially one breast Jackie. But when you are admitted to a general ward and you see people who have lost limbs or eyes or other more vital body parts, a breast is nothing. That should be the end of it right! I mean breast gone; cancer gone! I wish. This was merely the begging of what was going to be the toughest journey in my life.

Apparently, according to the doctors even though my cancer had not yet affected any major organ, it had reached to lymph nodes in my armpit and others in my chest. That meant that it was already at stage 3 and surgery was only a tip of the ice burg.

Another piece of my tumor had to be sent to India for what I was told was a more definitive diagnosis. I had many questions on this but then we have to bare in mind and understand the fact that we are a third world country and we have to rely on foreign assistance. I was not going to let there be any excuses, I had discussed with my husband and we had unanimously decided that we would trust the doctors fully, anything they asked for we would do our best to provide. The test was very expensive, and when it came back after a month, it brought bad news. They said it was triple negative. This meant that my cancer would not respond to hormone therapy and that this form was more aggressive. We had to move fast.

Chemotherapy and Radiotherapy

The first time I saw a doctor was in February of 2019 and by June, only 4 months later I had been scheduled for my first round of chemotherapy an KNH. I got 6 cycles, not missing even a single appointment. Then I was started on radiotherapy and of this, I got 8 cycles. I think God was on my side because despite the high intensity of these treatments, I got very few side effects. My hair fell off during chemo but I never had nausea or vomiting. It was after my second round of radiotherapy that suddenly my legs went totally paralyzed and I had severe pain in my back.

I woke up one day and I couldn’t walk

The first doctor I saw assured me that I would never walk again! I was furious. Who did he think he was to decide my fate? I prayed to God, who at this point was my only hope. In the midst of being unable to hold my urine or stool, totally dependent on my husband, I went to another doctor for a second opinion. He asked for an MRI which we provided within two days. He said my spine had been affected by radiation and that it would take a few months of physiotherapy and I would eventually be able to regain some function. It worked. Soon I was able to walk with a walking stick and continued my treatment.

The Kenyan Heath System

It is a common saying among Kenyans that as a middle-class citizen, one is only one illness away from poverty. The accuracy of this statement must never be doubted. I was barely halfway into my treatment yet all our family savings had been spent and by the time I was getting radiotherapy, we were in debt. This is despite having held three harambees and having received a couple of donations from friends and family. Health care is expensive! I know you are wondering about insurance, yes, we had insurance. Both my husband and I have been loyal contributors to the fund for more than 20 years of active government service. NHIF paid for some of our bills. However, the inconsistency is very annoying; at one time they pay half, another time a quoter of the bill other times three quoters. We had to dig into our shallow pockets.

NHIF doesn’t do enough

As if that Is not enough, the chemo drugs at KNH are never all available. At every visit, two or more will be missing and these we had to buy from a standby private chemist. I have not even told you about the doctors’ strike that made me transfer from KNH to Texas cancer center just so I don’t miss my treatment. Don’t get me started on the fact that my family and I have never lived in Nairobi and we do not have any close family of friends in the city. I have not told you that because of the overwhelming numbers at KNH my husband and I had to travel a day before our scheduled appointment with the doctor just to try and be among the first. We had to book a room to spend the night so we could be at the hospital by 6.00 AM and in line by the time they start the clinics; only to find people who had camped at the hospital compound overnight. I really wish we had an oncologist in my home county hospital.

I should also probably remind you that for each of my visits, since I do not own a vehicle, I had to use the unreliable public transport. And on several occasions where I couldn’t; either because I was too sick or later when I became paralyzed, we had to hire a private car. We were exploited.  We had to pay for the car, pay for fuel and then pay the driver. One would have to be a millionaire to sustain that. We were, and still are, broke.

Covid 19

Covid 19 affected my treatment, immensely. The president locked down the country to prevent the spread of the corona virus but forgot that most of our rural counties still depended on Nairobi for many services including specialized health care. Despite all these challenges, I soldiered through and until a few weeks ago I was at home doing relatively well. I, my friend, had beaten cancer!

You are probably wondering how I got to be hooked to this oxygen tank.

corona made my already bad life worse

Out of nowhere, life’s favorite punching bag, develops a dry cough, fever and severe shortness of breath. I was rushed to this hospital, where it had all started. The first thing they did was a covid 19 test and believe it or not it was positive. This time round I was surely going to die. I was so scared but something inside of me kept saying that if I had beaten cancer, covid was no match for me. I was a strong woman of God and I was determined to make it.

 I was taken to the isolated isolation ward. I could barely breath. I was put on oxygen and many other medications. Several days later, they repeated the test and it was negative, but I still couldn’t breathe on my own. At this point, I was transferred to the general ward, still on oxygen.

I remember the doctor showing me an X ray they had taken on the day I was discharged from the covid ward. He explained to me that my entire left lung had been destroyed by covid and it would take time to recover. Three weeks down the line, no change. The ordered another image, a CT scan. The news broke my heart.

They said that my lung had metastatic breast cancer. And for the first time since my journey started, I heard the doctors say a word whose meaning I have come to understand very well: palliative care!

Damn it! The small hormonal lump in my breast is winning. Or is it? I am not going down without a fight. Tomorrow I will be going to Texas cancer center, where I have chosen to be referred. I will fight even if it’s the fight that kills me.

By Dr. Nyadimu

Nyadimu Festo MD

Medical Doctor. MBChB with IT (Maseno university). Passionate about medicine, writing and leadership. Voice of the Kenyan doctor.

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