I want to live again

Memories I'd rather not have

I have been seeing doctors on my own for a long time. Much more than twenty years to be honest. You see growing up I had a label like many other children like myself- sickling. No description given about me would be complete without giving that important detail. Now that I am a grown woman with many unexplained symptoms and ailments I am usually a hypochondriac to the new doctor or nurse who sees my very long and detailed file- oh that is until they come across breast cancer then suddenly I change from the crazy woman seeking attention to the poor woman who has suffered her whole life.

When I was young I knew I could get permission from any teacher at my primary school and go to the hospital when my headaches were again getting out of hand. Problem with a small town my parents would find out about my hospital visit well before I got home, kind of defeating the purpose which was not to worry them again. Most of the time I was too sick to even dream of going alone. I was in too much pain to be present enough to think things through.

When I discovered my first tumour at 17years old it didn't happen the way I would expect such a thing would happen. On Valentine's Day 2002, it was only my mama, brother, and myself at home. My mother had to go see a neighbour (our dear mama Maina- may she RIP). I have no idea why that exact moment I heard Mrs Kariuki's voice (our high school deputy principal, and the one teacher who followed my health more than anyone else in high school) in my head as she once again asked us to do self check of our breasts. I had done it so many times before but because my first tumour run from one side to the other of the right breast (10cm by 7cm by 3cm) I never felt it. If I didn't notice the discharge that day, I have no clue what would have happened. I couldn't tell my mama and brother what I noticed until the next morning (my mum has very bad hypertension and I wasn't about to start calling neighbours for help in the middle of the night). So I was up all night asking myself all kinds of questions, knowing that had I felt a lump I would be at a better position than noticing discharge. Anyway I digress. After my mum recovered from the shock, commanded me to get ready and pulled herself together she took me to the first doctor we ever saw in a long line of doctors. I am ashamed at our health care because that doctor, the MOH at Kwale at that time went on to become a very senior official in the ministry of health. Here I was a very good catholic girl, and his first statement after listening to mama was “this is a disease for breastfeeding mothers”. To say we were shocked and confused is an understatement. I can't remember who recovered first. All I know is mama never took me there again. Atleast I can credit him with sending me to Coast General Hospital for a mammogram, even though he should have known that being young my breasts were too dense in normal circumstances to see clearly. Luckily my tumour was too big to miss. And the rest as they say is history.

I had already learnt by then to be strong any time my parents had to take me to see a doctor but this was worse than anything I had ever experienced. My worst memory which still haunts me was finding mama crying in the sitting room. I already wasn't able to sleep well most nights so my family would let me sleep in or if it got too late wake me up for breakfast and a shower then get me back to bed. That day though I got up for the bathroom before mama left for work. It was still quite early. I opened the door to find her on the sofa, having sat to have her breakfast. Because of everything we all were praying even more than before, mama however (more than the rest of us) would put on some gospel cds and sing along. My mum has a very very good and high soprano (I have no clue why I didn't inherit that, thank God her namesake did) so she has been singing all my life but at that time she would buy some very sad gospel music- you know, the sad gospel that is supposed to remind you that you ain't alone, and listen to the songs all the time. But that morning was different. I think she was almost giving up, so listening to the songs made her break down in tears. Since I moved silently she didn't have the chance to stop or hide from me. I can't remember my reaction- probably I toughened up and calmed her down, but I have never forgotten how she looked in that moment. So I toughened up even more than usual. Each doctor we have ever seen for my breasts always assumes she is the sick one, not just because of our ages but more because my mama always looks like she is about to break down, to start crying while I am always calm and even smiling. You can always see the shock when they start by trying to encourage her “eh pole pole sana mama”, and my mum has to point at me and tell them I am the sick one.

Hanging on?

As I stated I have been seeing doctors on my own for years. I think it started with me going to Eld and having to start looking for a doctor. The secretaries for a lot of the gynaecologists in Eldoret were not like I had gotten used to. I would go asking if I could see the doctor and they would immediately assume I was up to no good and would turn hostile. Then when I was done with the doctor, they would see on the file the doctor's drawing showing where my surgeries had focussed on and suddenly they would become kinder, attentive... I guess then I finally chose Dr Mabeya not just for how kind he was but also because he had two very kind assistants.

When I finally realised that the breast problems were here to stay, I started trying more and more to hide my doctor visits from my family until I had to tell them I needed surgery. From there it became a part of me. It was my way of protecting my family from the pain for as long as possible. I only say something when they really have to know or when I really need help. Because of that its been the norm for me to go to the doctor's on my own. Especially here in Brussels. You see the problem with a chronic condition is that at first people react like to any other person who is unwell. But the issue is that the other people get well, they heal, and get back to normal life. Unfortunately here is Gladys, ill since she was 2 and 1/2 years old. So even when you meet new people and they go the extra length for you let's say even for years finally life catches up with them and the finally become overwhelmed and slowly start disappearing. It's not that they care less, it's just after a while you being sick becomes the norm and when that happens people stop getting shocked when something else happens. So even when you develop an infection- which is something new and different- and you have a fever of 39.5 which only goes down to 38.7 and back up, no one gets shocked. You are on your own because unfortunately for you being sick is your reality. For me the worse I get and the more time passes by the less help I request. I have always had an issue with burdening people and even though I know there are people who won't mind, I can't risk them burning out when it comes to helping me. I save the goodwill for extreme emergencies.

That means however that I go for my doctors' visits on my own. I am personally followed by so many specialists it's crazy. My file is so big most times with a new doctor it's after we talk for a while that they realise I truly am not a hypochondriac. Still even for someone who has had to grow balls like me (excuse the language), I still have my scary appointments. On Monday morning I went back to see a new oncologist in a different hospital for a second opinion. It's an appointment that I would have asked someone to go with me but it was booked on Friday meaning there is no way I could find someone to accompany me. When you have had pain in your breasts since you were 17 you come to recognise some things including and especially when a new tumour/ lump/ or cyst is starting to develop. It's usually too small to even confirm at that point so the oncologist just tells you it's your muscle problem affecting the breasts also. However, and this happens every single time, a few months later we will confirm there is one thing or another. Friday was such a time. I could feel several lumps in both breasts. I have been having a problem with refilling cysts on the left side so it's likely it's more cysts but I can't differentiate. I was scared as I went on Monday, I am still scared. Deep down you know there is something but you still hope the oncologist says it's all the scar tissue. Unfortunately both the assistant and the oncologist proved me right. They insisted severally that it all felt benign but just to be sure I have to have imaging done, which takes time and leaves you living in limbo. Because I once had lumps develop on my lymph nodes they have to be extra careful, so I have to have a chest X-ray. I didn't even have the guts to ask them why everyone wants to or is X-raying my chest all of a sudden. The fact that the oncologist reminded me that I had a very rare cancer, one that hasn't been confirmed to respond to chemotherapy or radiotherapy yet leaving the only option of finding it on time and operating while getting a large margin of healthy tissue to increase chances of getting it all. I guess that unnerved me quite a bit. You see before some people who really care about me stopped me, I had researched and read every bit of information on every problem I have had- please never do that- meaning I know how bad things can go and that scared me.

I just realised I wrote all this because even though I may hide it so well, I perfected my mask many years ago, a lot is going on below. I am worried and scared and alone. Because I don't want to finish up any good will I still have I am waiting for worse circumstances while hoping they don't happen (I can't say pray because I haven't prayed in a while. I am too angry to pray) before using up the favour.

It's late and I am rumbling, however before you dismiss me as a sleep deprived crazy woman, you should know I work best around these hours. So I am as sane as can be right now- I guess that is the most scary thing, that all this is from a sane person.






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Gladys Luvuno 
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Bruxelles Auderghem, BRU, Belgium
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