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A day in the life of a terminal cancer caregiver

Saturday February 29 2020

CAROLINE NJUNG'E
By CAROLINE NJUNG'E
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I have been a nurse for 28 years. I began my career in 1992, having studied critical care nursing. Throughout my profession, I have worked with critically sick adults.

I find taking care of very sick patients, those that can’t do anything for themselves, rewarding. I decided to switch to palliative care nursing in 2015, when I handled a case that still brings tears to my eyes when I talk about it. I worked at the Nairobi Hospital back then.

A young man, a final-year university student in his early 20s, was brought to the High Dependency Unit (HDU) at night. He had advanced cancer of the bones and had difficulty breathing. I was the ‘shift in-charge’ that day, and one of the four nurses taking care of the eight patients admitted to the HDU.

LESS EXPERIENCE

A junior nurse with much less experience than I had was to admit the patient, but when I looked at his medical report, I knew that handling the patient was going to be a very big burden on her, so I decided to admit the patient myself.

His report indicated that he should not be resuscitated, all that could be done was to prepare him (for death) and call his family and let them know what was happening. I found him gasping for breath, yet he was alert, aware of what was going on and what was happening to him. I took one look at him and I knew that I had to immediately look for his next of kin and inform them that he did not have much time to live.

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I called the mother and father several times, but neither answered the phone. I knew then that I had to be the one to comfort him. I have never felt so helpless.

I had lost patients before, but at least they had died while I was doing something to try and keep them alive. In this case, there was nothing I could do, and that realisation weighed me down. Eventually, I asked him what he wanted me to do.

He told me, “I just want you to be here.”

LIGHTS DIMMED

It was about 2am, the lights were dimmed and I could see the monitor – his heartbeat was slowing down and his breathing was becoming more difficult.

I assured him that I wasn’t going to leave him, and I held him…he died in my arms. That totally broke me. (Tears fill Mercy’s eyes).

It occurred to me then that there were patients that just wanted someone to be there with them, yet there was nobody – how heartbreaking is that?

I joined the Nairobi Hospice in 2017 after studying palliative care nursing.

I first got a higher diploma from Oxford Brookes University in the UK, then studied for a degree at Makerere University, the only institution in the region that offers a degree in this branch of nursing.

My colleagues and I are on call 24 hours a day, seven days a week. Our phones are always on.

Mercy Kamau (seated) a Palliative Care Nurse
Mercy Kamau (seated) a Palliative Care Nurse attends to her patient at her home in Kibera on February 6, 2020. PHOTO | FRANCIS NDERITU | NATION MEDIA GROUP

Besides taking care of my patients, my colleagues often make home visits to see those that are bedridden and are therefore unable to come to the hospice. The hospice funds these visits.

I also teach their relatives basic care, for instance how to administer medicine and feed them, so that they don’t have to rush to hospital every time the symptoms get worse, bearing in mind most cannot afford healthcare.

We also take them, (patients and relatives) through what we call pre-mourning, which includes talking about death. If they cry, I hold their hand and tell them it is okay to cry.”

Anastacia Adhiambo, patient

The Nation team accompanied Mercy on a home visit to Kibera. The patient, Anastacia, a mother of three, is 32.

She has colon cancer. Her husband is a driver. We find her lying on the bed in their one-room house.

She is too weak to sit up. She is painfully thin. Mercy tells us that cachexia syndrome has set in.

This is a wasting disorder that affects people who are in the late stages of serious diseases such as Aids and cancer. It is one of the signs that the body is shutting down.

“Anastacia attended daycare (a weekly support group at Nairobi Hospice) twice and never returned. I was worried and decided to visit her,” explains Mercy.

Anastacia’s husband, a driver, earns less than Sh20,000 per month. He cannot afford her chemotherapy sessions, leave alone medication – there is also school fees to pay for their children and food to buy, therefore this visit means a lot to this family.

VOMIT

During her first visit to the Nairobi Hospice, Mercy tells us, the cancer had blocked Anastacia’s colon such that she could not answer a long call, she would therefore vomit the stool.

“I want to reassure her that even though we cannot give her money for chemo, we can give her medicine to manage the pain and comfort her, her husband and her children,” Mercy says.

Anastacia’s two elder children have been living with a relative since her illness got worse. However, her last-born son, a boy in Grade Two, still lives at home. He is in school when we arrive.

Anastacia breaks down and cries when she sees Mercy. Mercy sits on the bed by her side and takes her hands in hers, and allows her to weep. After she calms down, Mercy asks her how she is coping.

The Nairobi Hospice building located in Upper
The Nairobi Hospice building located in Upper Hill as pictured on February 6, 2020.

This opens another floodgate of tears. Anastacia’s bone-thin shoulders heave with each heart-breaking cry. The scene makes you feel that you shouldn’t be there – witnessing her grief. Eventually, Mercy requests us to leave so that she can examine Anastacia.

In her doctor’s bag is an assortment of medication including morphine, the only pain medication that Anastasia responds to. Cancer pain, Mercy tells us later, is deep and relentless. Pain medication such as paracetamol and brufen cannot dull it. Only morphine can.

When we return to the room after about 20 minutes or so, Anastacia has calmed down. She tells us that her illness troubles her son.

CANCER

A few days ago, she tells us, her son said, “Mum, Ken Okoth (Former MP for Kibra) and Joyce Laboso (Former governor, Bomet County) died of cancer, right? You have cancer number?”

Anastacia told him one, only for her son to say, “Mum, if it was number three or four, you would have died.” But Anastacia has stage four cancer.

Mercy is concerned and asks her whether she can return on Sunday, (it is a Thursday), to have a chat with the small boy.

From the story Anastacia recounts, she deduces that the boy needs to talk to someone other than her parents. Her mother says yes.

Before we leave, Mercy writes her phone number down on a piece of paper and tells Anastacia to call her in case of anything, even if she only wants to talk. Or cry. Whatever time it is.

Mercy has lost many patients since she began working at the hospice.

“I don’t count,” she says.

The majority are cancer patients, even though patients with other diseases come to them for care.

“In a month we see about 100 to 150 patients. We lose 90 per cent of them,” she says.

PALLIATIVE CARE

You see, most patients that seek palliative care come to the hospice very late, when the disease is at an advanced stage, yet palliative care should start immediately after diagnosis.

If you stop feeling, walk away

“Many don’t know what we do, they think that we teach people how to die. But it is not about dying, it is about living, and living fully.

The disease might be killing you, but you need not suffer psychologically – as our mission statement says, we add life to your days, not days to your life.”

Has her job grown easier with each passing year?

“The day you get used to it, stop doing it, because it means that you have become indifferent,” she says.

Theirs is an emotionally draining job, so how do they cope?

“We have been trained on how to handle it. When we realise that we are getting too emotionally attached to the patient, we step back and ask a colleague to take over, otherwise the grief will break you, and of what use would you be to a patient in that state?”

They recently lost a 12-year-old to cancer. The most common cancers among children are cancer of the brain, leukaemia and brain tumours.

Mostly, it is women that accompany their sick to the hospice.

WEAKNESS

“Men come once or twice and then run away. I have realised that men don’t like showing weakness, to them vulnerability is weakness. Even the male patients don’t come to daycare regularly. They prefer one-on-one therapy and will insist on seeing the caregiver they’re used to, the person they first told their story,” says Mercy.

Mercy is married with two children, a 17-year-old and an eight-year-old.

Her husband is an orthopaedic surgeon.

When she told him that she wanted to switch to palliative care, he was taken aback.

“How will you cope? I fix bones and people who were unable to walk start to walk. It makes me happy. You want to take care of people who are likely to die, how will you live with that?” he asked.

But Mercy looks at it differently.

“I am gratified when I make the time remaining for my patients and their families easier,” she says.

In spite of his misgivings, her husband supports her fully. For instance, he helped pay for her degree at Makerere University.

“His support makes it easier for me to cope,” she says.