I sustain myself with the love of family.
Upon diagnosis 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. However the doctors in charge of the radiotherapy fucked things up and ended up paralysing my mum from the waist down. At the time we had no idea that my mum would end up in a wheelchair for the rest of her life. We thought we were finally over the hill. We thought my mum would live a beautiful, cancer free life.
How wrong we were.
About a year after my mum concluded her treatment plan, she began walking with a limp that was hardly noticeable at first but slowly got worse as the days went by. The steadily progressing limp worried her as she believed it meant she still had cancer somewhere in her body, even though the scans were telling her otherwise. So she elected to go to India for a full body PET scan. My mum had an excellent insurance cover and initially they were willing to pay for two people to accompany my mum to India. As the firstborn I was a natural contender for one of the two “open positions” and my aunt – my mum’s big sister – was the obvious second choice.
As I had never travelled out of Kenya before, I began the gruelling process of acquiring a passport. Gruelling because in 2014 (not sure if things have changed now) the immigration office was a hot mess and if you did not “know someone”, applying for a passport was a whole day affair at best.
I had just secured my Visa when the insurance company informed us that plans had changed and they could only pay for one person to accompany my mum on the trip. I have a lot of empathy and when I see someone I love in tears more often than not I end up crying myself mpaka they end up comforting me instead. So I volunteered my aunt as tribute because I knew if things got tough I would be all tears instead of the proverbial shoulder my mum needed to lean on. So my mum and her big sister went to India for a full body PET scan in May 2014 and, to our great relief, the results confirmed she had no cancer in her body.
One of my mum’s greatest attributes was her sense of humour. My mum was funny AF and she never lost her sense of humour despite all the challenges she faced in her five year battle with cancer. In August 2014 some of my friends from back then came to see my mum to offer their support. Seeing as it was my birthmonth they also brought me a lovely chocolate chip cake from Cake City as it was my favourite at the time. At the end of the evening when my mum needed to get up from her seat she joked to my friends that they would finally get to see the kiwete in action. She was funny like that, but if she knew that the coming month would be the last time she ever had any use of her legs she might not have made that joke so easily.
When my mum officially became paralysed from the waist down, her sister moved in and her husband moved out. My mum would say, sometimes jokingly, other times with pain in her voice, “yaani I got sick and this man moved out of the house completely.” He would occasionally visit my mum, both at home and in the hospital, but those visits were few and far between. He also never slept over at home after my mum became paralysed because as he once said in June 2017, he cannot sleep in the same house as a sick person.
But on the flip side, my aunt (her big sister) moved in with us for almost two months to take care of my mum. She slept on a mattress on the floor of my mum’s bedroom and in that time my aunt helped my mum to bathe and dress, she changed her adult diapers, she made sure my mum took her medications … basically anything and everything my mum could not do for herself, her big sister was there for her. We had a candid conversation with my aunt about that time when I went to visit her in Nakuru last year in October. Because I had never seen her do so, I asked my aunt if my mum ever cried when she first became paralysed, to which she replied:
Many times. Many times, but not openly. If you found her crying she would just adjust and continue.
Meaning she would wipe away the tears and act like she was not crying just a few seconds ago.
I then asked my aunt if she cried herself, to which she replied “not in her presence.”
On October 31, 2014 – the last day of breast cancer awareness month – my cousins and I had a dinner at home for my mum to show her some love. It was a lovely evening where my mum’s nieces came together to give her some much needed support one month into her paralysis. We ordered the loveliest cake and my cousin, who is the family MasterChef, made her signature pilau and some chicken for dinner.
My aunt was my mum’s initial caregiver and when we eventually got a daytime nurse aide, my aunt moved back to her home and the caregiver baton was passed on to me as the firstborn. I took over night time duties and was also in charge of taking care of my mum on Sunday as that was the nurse aide’s day off. I was the one who would change my mum’s adult diapers when she had done a number two. Having to wipe my mum’s butt like she was an infant is one of the most jarring experiences I have ever gone through and to this day I still get triggered whenever I see adult diapers in a supermarket. I was also the one who would give my mum her sponge bath, help her dress, wheel her around the house and give her her medications and meals across the day. I had a boyfriend back then but for a very long time we never spent a Sunday together because I had to be home taking care of my mum.
Being my mum’s caregiver is the most difficult, most rewarding, most conflicting role I have played in life to date. The role came with so many ugly emotions – resentment, envy, hate, despair, bitterness – that I was not prepared for and had no idea how to deal with. Between 2014 and 2015 I was in so much pain but I kept that pain buried deep inside me and did not talk about it nearly as often or as honestly as I should have. Our MasterChef cousin saw my pain though, and for my 28th birthday in 2015 she organised a surprise dinner party for me at Soko restaurant in dusitD2. That party was a lifeline I desperately needed. It reignited my fire for life and made me want to continue living again because for a very long time I just wanted to die with my mum. That party gave me a new lease on life mpaka I quit smoking on September 1, 2015. Yesterday marked five years since I last smoked a cigarette.
My aunt who moved in with us to take care of my mum when she first became paralysed was also the one who would accompany my mum on her copious hospital admissions. Hospital admissions can be tedious AF and my mum being paralysed needed someone to help her with the entire process. Most times they would go with one of my brothers as they would be the ones driving and I would meet up with them later in the day after leaving the office.
My mum had a lot of support during her five year battle with cancer. She had her friends, her nieces, her children, and most of all her sisters. My mum would often say, in no uncertain terms, that she would not have fought as hard as she did, or as long as she did, were it not for her sisters. Sometimes I would jokingly ask:
Me: Haiya! Not your children?
My mum: Nope! My sisters. Oh Lwile those women give me so much motivation to keep on fighting!
The sisters have a WhatsApp group chat called ‘The Geng’ because that is how they pronounce the word gang. Lol. When my mum was admitted in hospital the geng would visit her often, and when she was at home Sunday was the official day to visit my mum. The geng would spend the entire afternoon chatting, eating, laughing, drinking tea and when they left at the end of the day my mum’s spirits would be greatly lifted.
No man is an island which is why even during the best of times you cannot do life alone. At the worst of times you need a strong support system to rely on and give you a reason to fight on those dark days you just want to give up. My mum had the greatest support system in her family and I am proud to say we are the main reason she never gave up. To anyone reading this who has a loved one battling a terminal illness, I am sending you love, light and a shitload of strength. It is not easy to be strong when you see someone you love suffering, but they draw on that strength and keep fighting because of it.
Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.