Exactly eight years and one month ago on this day, on an ironically sunny Friday afternoon, my mum was diagnosed with stage four breast cancer.
My mum’s oncologist recommended chemotherapy followed by a mastectomy then radiotherapy as her treatment plan. After eight rounds of chemotherapy my mum had a mastectomy in December 2012 followed by radiotherapy in January 2013 to target the cancer that had metastasised to her spine. As a family we believed that the treatment plan prescribed by the doctor would be all my mum needed to emerge victorious in her battle with cancer. Little did we know we were at the beginning of a five year fight that would heartbreakingly come to an end on December 13, 2017 at 1:10 a.m.
2012 and 2013 were relatively calm years … well as calm as it can get when a loved one is fighting a terminal illness. Then all hell broke loose in 2014 because for the next two years my mum would be admitted to hospital on a monthly basis. I have the memory of an elephant so I “never forget” shit, but I do not remember what my mum was being admitted for in the nine months before she became paralysed from the waist down in September 2014. That gap in my recollection is my brain reacting to the trauma by blocking out the painful memories in a bid to keep me sane. But if I were to venture a guess, I believe she was being admitted for pain management.
Pre paralysis my mum would spend about a week in hospital and after she became paralysed the hospital stays became even longer. In January 2015, after my mum had been paralysed for approximately three months, she spent 20 days in hospital following complications from late-stage bedsores. The nurse aide we had at the time did not tell us that we need to turn my mum every two to three hours at night to prevent her from developing bedsores. So for two months my mum would be on a wheelchair in one position all day, only to lie in bed in one position until morning when I would check up on her before getting ready for work. Eventually she developed bedsores and by the time we understood what was happening and took her to hospital, the bedsores had brought on a whole host of complications, one of them being pneumonia. She also needed surgery to fix the damage caused by the bedsores on both hips. The damage on her left hip was significantly worse than her right hip so the doctors performed a skin graft on the left hip using skin from her thighs. They cut off a substantial amount of flesh for the procedure and so for the rest of her life my mum’s thighs were distinctly uneven.
The radiotherapy needed to save my mum’s life in January 2013 was poorly done, resulting in two major side effects: paralysis and chronic pain. The botched radiation damaged the nerves in her spine resulting in paralysis, but unfortunately the brain continued to get pain messages from the nerves that originally carried impulses from her legs. These nerves then misfired and caused chronic pain that my mum lived with from 2014 until her death in 2017. The chronic pain was the reason for almost all of my mum’s hospital admissions in 2014 and 2015. She would be admitted at either Nairobi Hospital or Aga Khan, depending on what problem took her to hospital and where the doctor attending to her case was based. I spent weeks upon weeks at both Nairobi Hospital and Aga Khan and it was not long before I knew them like the back of my hand.
Being a firstborn I felt an enormous responsibility towards my mum so I would not let a single day go by without me visiting her in hospital unless I could not help it. And if I were unable to see her, I made sure one of my siblings and/or aunties would visit as it used to break my heart when my mum would go a day in the hospital without getting a visit from her loved ones. It would happen from time to time, as life is busy and shit happens, but man it used to break my heart when it did. Not only did I try and make sure she had at least one person visit her every single day, I was also watchful of people’s energy as it was important to me that my mum felt nothing but positive vibes only. Her situation was depressing enough as it was, there was no need to add to it by visiting with a gloomy demeanour.
That being said, having to fake joy in a hospital room is exhausting. It required a certain level of pretence that would leave me feeling so drained by the time I was heading home. But I had to do it because my mum needed me, so I developed little tricks to help me cope such as ALWAYS playing Shake It Off by Taylor Swift when walking into the hospital. Taylor is my favourite artist of all time, and because I resonate deeply with metaphors, I would play that song real loud through my earphones and shake off whatever negative emotions I may have been feeling. Whether it was a bad day at the office, a fight with my then-boyfriend, or just general frustrations with life, none of it had any business carrying over to my mum’s hospital room.
As mentioned, being a firstborn I felt an enormous responsibility towards my mum and so I would visit her after work but I would not leave until she ate supper. She would eat at around 9 p.m. and most days I would need to coax her to finish her food, or at least eat a decent amount, so more often than not I would not leave the hospital before 10 p.m. It was all sooo overwhelming, which is why one of my biggest blessings in those two years my mum was being admitted to hospital every month was my boss at the organisation I worked for at the time. She was incredibly understanding if I came in a bit late because I was tired from the night before, and as long as my work was done or I had a plan to get it done on time, she always let me leave early if I needed to. If there was work to be done that I could not get to but I still needed to leave early, many a times she would offer to do my work for me. I would never have survived 2014 and 2015 if it were not for my incredibly understanding boss who will always have a special place in my heart.
My mum was fortunate enough to have an excellent insurance cover and for that I will be eternally grateful because we would never have been able to afford the cost of her treatment were it not for insurance. In fact her cover was so good that she was able to stay in a private ward whenever she was admitted in hospital. At Nairobi Hospital she would stay in one of the private wards in the South Wing and in Aga Khan she always stayed in Princess Zahra Pavilion. Obviously I am not saying this to flex, because who the fuck brags about a hospital room?! But between 2014 and 2015 my mum must have spent at least six months cumulatively in a hospital so I will always consider it a blessing that she could afford the increased privacy and luxury of a private room.
I much preferred when my mum stayed at Aga Khan because she rarely had an issue with the nursing staff there. Plus the menu at Princess Zahra is really good. I mean, they had chicken cordon bleu FFS! Though I never did get my mum to order it …
Nairobi Hospital was a whole other ball game and it all came down to their nursing staff. There was a day my mum was lying in bed and needed to be turned so she pressed the bell to call for a nurse, but for well over an hour no one came. She shouted and screamed for help in that time until her voice became hoarse but still no one came to her aid. So she continued to lie in that position, deeply uncomfortable but unable to turn herself because she was paralysed from the waist down. The Universe must have taken pity on my mum because for some reason I called her in the midst of all that to check up on her, only to hear her crying because of her plight. As you can imagine, I was livid. I was ready to kill someone. I looked up Nairobi Hospital’s number online, called the main desk and asked to be transferred to the ward my mum was in. Once transferred, I told the nurse to go check on my mum and let her know that we were going to fight when I dropped by to visit in the evening. Staying true to my word, I stopped by the nurse’s station before seeing my mum to tell them THE. FUCK. OFF!!! and let them know that if such a situation ever happened again there would be hell to pay.
Sometime after that incident, the nurses reverted to their inferior ways and this time it was my mum who snapped. She refused to bathe, eat and take her medication until she spoke to the CEO of Nairobi Hospital. At first the nurses and her doctor thought they could pacify her, but as the day wore on and she did not budge they started to get concerned. They even sent in a counsellor but my mum was not having any of it. She had reached her breaking point and needed to air her grievances to the CEO, so when the nurses finally understood she was not backing down they arranged for the CEO to come see her.
When my mum’s cancer came out of remission in October 2017 and she was admitted to hospital that month, I called for a meeting with her doctor and the head nurse of the ward she was staying in. My siblings and aunt were also present for the meeting, and I was so hype for it that I showed up with a notebook and pen to take minutes. I let the head nurse know how the hospital had fucked up many times before with the quality of care accorded to my mum and I was not having it this time around. I told both the nurse and the doctor that to them my mum is just one of many patients they see every day, but to me she is my one and only mum. Additionally, my mum was extremely apprehensive about doing chemo all over again and I knew that shitty nursing care would not help sway her decision towards agreeing to do chemo. And I really, really, really needed her to get back in the ring for round two of her battle with cancer.
Sadly she lost the fight a short three months later but I am telling her story, and will continue to do so for a long time to come, because even the battles lost are still worth telling.