In The Eye Of The Storm – Cancer Carer

Written by Cabral Opiyo

Akiko, let’s call her Akiko. The story she has to tell is heavy and she needs the added layer of anonymity she tells me with a chuckle. Her caregiving journey has not been straightforward or smooth, at every turn a curveball has been thrown at her and she had to go with it for the sake of her family.

Akiko’s husband was a gym buff, a fit man who loved to do sporty things, and was a physical specimen who had never had to go to the hospital once in his life for any serious illness apart from common colds and coughs. That all changed in December 2017 when his appetite went from ravenous to barely touching any food. He couldn’t sleep either or work out anymore and that’s when the alarm bells started ringing in Akiko’s head, something had to be wrong for her husband to abandon his favourite pastimes so suddenly. 

His chest started swelling as well a bit later and Akiko almost asked him whether he had started using steroids seeing as he worked out so much. It was difficult news when they went for a check-up in hospital, an obstruction was detected and a clot on the neck was discovered, on further inspection, a lump was also discovered on her husband’s chest.

After he had had a routine surgery, the doctors pulled Akiko aside and cautiously advised her that they might have to visit an oncologist for further diagnosis, never a good sign. At this point, Akikosays that they were still positive and thinking it was routine and could be handled, no one wanted to utter the big ‘C’ word, positive thoughts only.

Turn of events – Fast Furious

The oncologist did confirm their worst fear, her husband had cancer and they were going to have to start chemotherapy immediately to shrink the growth. It was all moving so fast, Akiko had no time to process that this was really happening to her family, they were still a young, fit couple with their whole lives ahead of them. 

Emotionally, it was a huge shock for her husband because essentially he went from being fit and never once seriously ill to being handed a terminal disease diagnosis. 

And just like that, Akiko’s life as a caregiver began; she had to assist her husband to dress and eat, things he previously did so easily did not come so easily anymore. He was on blood thinners that needed daily injections but to hire a nurse to do it would be too expensive, so Akiko stoically learned how to do the injections and got on with it. She has no idea till now how she managed to do it, injections, open wounds, and taking care of a patient with these needs wasn’t an area Akiko was exactly skilled in but she did what she had to do for her husband. 

Akiko was a businesswoman, after the diagnosis she had to cut her work hours to be the ever-present caregiver and when she could grab a bit of time for herself, she worked form home. This was her life now. The eating schedules for a chemo patient are vastly different and Akiko had to adapt to that while also taking care of her son who was three years old then. In addition, she had to be on high alert and they visited the hospital more often than she can remember. Any slight rise in temperature from her husband could mean the onset of an infection and they couldn’t take the chance, so they were always in the hospital, it was a life and death matter.

Akiko’s child started school and once she went to see how he was doing and the teacher told her that her son had a few problems. On further investigation, Akiko discovered that he was terrified and always told the teacher that he saw his mother injecting his father’s arm. It broke Akiko’s heart that she had been so preoccupied with caring for her husband that she did not think about what her son saw and they decided to do things more privately.

Akiko’s family and friends, including the church, offered support and would check in on them occasionally and that helped her quite a bit. She pauses to compose herself as she talks about her husband’s side of the family. Akiko states that it was one of the most difficult aspects of her time as a caregiver since they offered no support at all and at times were openly hostile and unhelpful. Her husband found the situation difficult since he had to choose whom to side with in addition to the illness and missing certain milestones in his son’s life. 

“My son was in school, I had no house help and at the same time I had to go to the hospital to visit my husband before visiting hours elapsed when he was admitted.”

She couldn’t leave her son alone in the house and there was no one to leave him with so she would put him on her back, board a bus and connect as many times as possible, trying to beat the horrible rush hour traffic coupled with hospital visiting hours. When she arrived at the hospital, it was almost too late to see her husband and kids were not allowed into the ward anyway. She encountered the same problem; there was no one to leave the child with as she went in and her in-laws who were inside her husband’s room were being hostile as usual. The build-up of frustration and stress was getting to Akiko and there was nothing she could really do about it. 

When it rains, it pours

Emotionally, Akiko was a mess but she had to be strong for her family trying to fulfill the strong African woman type expected by society. Physically, her body was crushed, she had to be admitted and in no time at all had two surgical procedures. Suddenly, it was her husband who was forced to take care of her, when the problems start coming, they come in threes it is said. 

I ask Akiko how she managed to stay sane during the overwhelming time and she thinks about it deeply finally admitting, “I used to be exhausted most of the time, with no time for myself so I slowly started taking maybe a quarter a pill of one of my husband’s medicines called Betapine. And suddenly I found that I could sleep and get some rest and cope with the pressures since culture expects you to shoulder the burden and not break down. A quarter grew to a half and finally a full pill, I didn’t think it then but with the clarity of hindsight, it was drug abuse plain and simple. 

“Caregiving shows you that you can be caring beyond what you thought you were capable of. It brings out character traits you never recognized in yourself and when I look back now I almost can’t recognize myself. My love language is acts of service and I think that’s why I was able to do the things I did during that difficult period.”

Akiko is well placed to talk about caregiving and some of the qualities she feels are important for caregivers to espouse are; self-confidence in your decision making, infinite patience, and firm belief in yourself.

The lessons of caring

Which lessons did she learn from her time as a caregiver?

“Value and appreciate yourself and don’t be quick to accept the criticism of people who haven’t walked your journey. If you can connect with fellow caregivers, don’t go through it alone or you will get overwhelmed and it is not pleasant. 

Finally, get professional help (a counselor) to walk with you in your journey as a family; it will help both parties manage the pressure of the situation you’re going through.”

Akiko’s husband had to travel for a bone marrow transplant and she couldn’t go with him since she had to take care of their son and so his elder brother accompanied him on his journey. They talked constantly and even arranged her son’s birthday where he would send money and they would video call for the birthday celebrations.

But just before he left as they were having one of their long talks, Akiko’s husband told her, “I’m not going to make it.” Hearing him say that made it all very real for Akiko that her husband might not come home and being a faith-based person, her faith prepared her for the very worst.

Beginning again

It is said that married people at times get so close, they are one and the same thing, and one night at around 4 a.m., Akiko’s son woke up and started wailing for no apparent reason and Akiko had a feeling that her spouse was gone. She calmed him down and gradually fell back asleep and when she called her husband in the morning, his brother picked up and told Akiko that her husband had passed away at 4 a.m. that morning.

Akiko’s Story is dedicated to all those who take the time to help cancer warriors fight;

You do well.

Akiko says that that time was all a blur and she can barely remember the events of the next few weeks, only God’s grace carried her through. Suddenly, she had to receive her husband as cargo and had to get used to him being referred to as ‘the package’. 

It took her the best part of a year to come to terms with her situation and process it all but Akiko says from her journey was born her passion for caregiving. Having experienced it, she wouldn’t want anyone to do it alone and she organizes a support group for caregivers where they share and offer a shoulder to lean on. Out of tragedy, instead of looking inwards, Akiko has extended even more of herself to others because that’s the type of woman she is.