I kicked cancer, but learnt that life is fleeting
By Jaqueline Mahugu | March 29th 2020
Back in the day, you might have found Senator Gertrude Musuruve unwinding in a pool after a long day.
For a woman who “never wasted a single hour” in her heydays as she will tell you, taking a dip in the swimming pool, doing powerful flutter kicks and feeling the subsequent rush of the water used to be the perfect way to unwind.
She can’t do that anymore.
On this day, she navigates the lobby of the Serena Hotel on crutches, slowly and gingerly, one delicate step after another.
The hotel's lobby is eerily empty at lunch hour, a far cry from the days before the coronavirus pandemic sent people into seclusion and social distancing.
Dr Musuruve is not as nimble as she used.
Not that you will hear any complaint from her, only gratitude. The senator from Kugari, Kakamega County, is glad to be alive, she tells me, having been triumphant over the bone cancer that took part of her left leg.
She represents persons with disability in the Kenyan Senate today, but coincidentally, Musuruve's career had been in special education.
"Before I got into special education, I had taught students and seen the gaps. I decided to study special education and linguistics to fill those gaps in teaching," she says.
As a result, her book on sign language was one of the first books recommended by the Kenya Institute of Curriculum Development. When she enrolled for her PhD, her research was in the media's portrayal of persons with disability.
She had no idea that after spending her life with them, that one day she would be one of them. "So everyone is a candidate for cancer and for disability. It can happen to anyone in an instant. I didn't know that all my life, God had been preparing me for it," she says of the coincidence.
Her eyes still radiate with the tenacity with which she fought the ailment when it eventually came.
"I was diagnosed with Ewing's Sarcoma in 2013, when I was doing my doctorate," she says.
Ewing's sarcoma is a type of bone cancer that mostly affects the long bones in the legs, pelvis and thighs. Hers was a rare case, as that type of bone cancer is more common among children and young adults. She was 46 at the time of her diagnosis.
"I was initially misdiagnosed so the cancer went undetected, but after taking drugs for three months, the pain kept getting worse," she says.
It was clear something was off and walking was becoming increasingly difficult.
After three months of taking the wrong medication, a biopsy at Karen Hospital revealed the devastating truth of her situation. The cancer was raging on her left leg, between her lower pelvis and her femur socket.
“I decided to get a second opinion at Nairobi Hospital,” she says. The results were the same. The doctors recommended an amputation of her leg and told her that her best bet would be in South Africa or India. Or in Europe.
By then, she was a lecturer at the Jomo Kenyatta University of Agriculture and Technology. She felt the brunt of being diagnosed with cancer. Treatment was prohibitively expensive. “I realised I could not afford any of the options I was being given," she says.
Aside from the fact that she could not afford treatment, the doctors told her they could not save the situation in Kenya.
“I left the hospital bed with a blank mind. I did not know what to do next,” she says.
She had to watch her daughter’s graduation from her hospital bed. Her new-born granddaughter had also to be brought to her hospital bed for her blessings in case her days were numbered.
“I cried to God for a second chance to live,” she says. “I did not care which form I would be living in, whether disabled or not, I just wanted a second chance."
She sold some of the family property. Friends, family and colleagues also helped her raise the funds needed for treatment in India.
“I pray that I will not be in the register of the dead either in Karen, India or any other part of the world,” she remembers praying.
In India, she was given several treatment options, one of which involved removing a large chunk of a bone but not the whole leg, and being fitted with a hemi-pelvic customised prosthesis
She underwent a 14-hour limb-saving surgery after several rounds of chemotherapy to reduce the tumour.
The total cost of treatment was about Sh5 million.
As she underwent treatment, her children would talk to her via Skype, something she said was important as she wanted them to follow her progress and see and accept her new form.
She did not expect that she would be disabled, but three weeks after surgery to fit the customised prosthesis, she still could not walk. The doctors had removed her femur up to three quarters of her leg and chopped off a quarter of her pelvis.
The prosthesis dislocated a number of times because of the lost mass, which the doctors removed to ensure the cancer didn't return.
“With each dislocation, I had to go back to the baby steps of learning how to walk and do everything all over again," she says.
A doctor advised her to do her best to leave the hospital bed to prevent other opportunistic illnesses like diabetes and high blood pressure.
"When I was able to make one or two steps from the hospital bed, I told my sister to book the next flight. I came back against my doctor's wishes," she says. "I decided if I was going to die, then it had better be at home as there was no need to overburden my family."
It was an arduous journey for her. She still had a catheter from the hospital bed in India and she was transported in a ambulance from the airport to her bedroom.
She was not sure how much time she had, but she believed she would be well. If not, she was determined to actually live while she was still alive.
At first, she had a physiotherapist to help her re-learn how to walk thanks to her employer. But the daily rate of Sh6,000 was way too high and her brother learned to do what the physiotherapist was doing and then took over.
While recuperating, she would do one of her other favourite activities - reading. She still reads voraciously and the Bible is her favourite book.
Finally, the tide turned in her favour. In December 2013, her doctor told her she had a surprise for her. "He told me my results had shown that I was cancer free," she says.
It was a surreal moment for her, the confirmation that she had got a second shot at life, that God had heard her prayers.
The disability did not bother her. Her career had shown her that even disabled could lead normal and productive lives.
"I now felt I needed to go beyond the classroom because I had a story to share. Before, I had been in special education but I used to teach from theory, now I am able to do it from a practical perspective," she says.
She decided to apply to the Senate as a representative of persons with disability and in 2017, she was nominated through ODM party. The foundation she started, Living Beyond Cancer and Disability had given her a platform through which she could reach out and raise awareness on both issues.
Now as a policy maker, she recognises that most people in Kenya would die if they went through what she did because of lack of funds. She is working to change that.
"There is a Bill we amended on cancer so that treatment of cancer is devolved to the counties. There should be a cancer-screening centre in every county. So many things need to change and as a legislator, I will do my best to add my voice to policies so that we can ensure better health," she says.
Her battle with cancer and subsequent disability has strengthened her faith in God and taught her that life is fleeting.
"I never take anything for granted. Whatever I do, I do it with my whole heart," she says.
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