After battling months of treatment, cancer survivors often find a bigger struggle waiting for them when they return to work – the apathy of employers to reintegrate them into the system.
Brenda Swanepoel (name changed to protect identity) calls herself “a breast cancer warrior”.
The 40-something, who works as a business developer in one of South Africa’s largest law firms, has endured the pain and discomfort of the much-feared doctor’s verdict – “you have cancer”.
We meet Swanepoel on a warm Thursday morning in her Johannesburg office. Beneath her warm exterior is a woman still grappling with her diagnosis, still battling to adjust to life in the workplace in the aftermath of the ensuing treatment.
“I was in the shower in December 2016 and something in me said ‘check your breast’. I used to be fairly diligent about it but I hadn’t gone for a mammogram for a long time,” she says.
She clearly felt a lump.
“It was the size of a lymph node. I thought I better not be procrastinating this so I went to a radiologist,” says Swanepoel.
The doctor told her she suspected breast cancer. The words cut deep into her being, eating her up as cancer does.
“When he told me that it could be breast cancer, I knew I had cancer. I was lying on the bed and one little tear crept out of my eye.”
That evening, she got home and told her partner of 25 years that the vacations they were intending on taking on weekends would be replaced by visits to the oncologist.
In January last year, the doctor confirmed she had cancer. Her life was going to change forever.
For the next six months, cancer dictated her diary. Seeing other cancer patients at the oncologist’s ward when she went for her first chemotherapy brought a further sense of denial.
“I was like this is not really happening,” says Swanepoel.
But the reality of cancer would soon kick in. She underwent the first of three operations within a week of being diagnosed.
“I called my partner and said ‘we have to go to the breast surgeon at half past three’ and he said ‘I don’t do hospitals and I don’t do doctors’,” she says.
He was unsupportive throughout the duration of her chemo-treatment and she eventually parted ways with him.
“One thing that you would always hear from any warrior is ‘the hardest part of their journey was their partners’,” she says.
Her advice to them is to always put themselves first.
“This is all about you, this journey is about you. Everyone else has to pull themselves together. It is all about you and your healing journey,” says Swanepoel.
The journey to recovery does not just affect your family and those close to you, the more painful fact is that it also has an impact on your career.
Swanepoel was among the luckier few – in the beginning.
“My firm was amazing, they wanted me to go on leave…I thought they were out of their mind, I didn’t want any one’s pity because work is work. My attitude was that I am on a healing journey.”
She would work from home during the days she had chemotherapy and she could cope with the workload.
“I was tired but I was coping at that stage. I did not want it [the breast cancer] to beat me. The firm was supportive and understanding because we have had a few cancer warriors in the firm.”
The treatment stages advanced and her work started to suffer as she was bereft of energy and struggled to focus.
Some of the side-effects of chemo are constant nausea and weight-loss, in addition to excessive fatigue.
“It started getting harder because I had to have weekly chemotherapy and on the day, I would be out of it, I would be gone. I would be sleepy on the chair and I would sleep at home, as you get your head up, it would be chemotherapy again. My firm tried to get me to go on special leave but I was resistant, but on the other hand, I was exhausting my sick days,” says Swanepoel.
She ended up taking four months off for treatment and two months to recover. The medical leave was covered by an insurance policy her firm had for employees which pays them while they’re on leave.
Throughout the process, she was grateful; she also attended therapy to help deal with the situation.
She returned to work in March this year, but says re-adjusting mentally and physically to the workplace is something medication can’t help with.
“The hardest part of my journey has been coming back to work. It’s is not only about adjusting [to the work environment] after being away for six months, but the stamina you need for work is very different to the stamina you need for anything else,” she says.
The reintegration has been stressful and she says a constructive, planned program of support at her organization has been missing since her returning to work full-time.
“I didn’t realize how exhausted I was. People think because you were away for so long, you were resting, forgetting that you were injected with medication which exhausted you on a regular basis. You were not on holiday, you were healing and surviving,” she says.
It is a popular belief that cancer ends with chemotherapy.
“So everyone had this attitude, that cancer was last year so everything is normal this year. But that is not the case, a year of treatment requires a year of the recovery period,” says Swanepoel.
And recovery is the hardest.
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“You are not the same person you were. You have gone through major physical trauma and you have gone through major mental trauma.”
One of the major setbacks of cancer is hair loss.
“Hair represents beauty…it is also very much a part of your identity and the image you want to project to the world. So when you don’t have it, you are left naked,” she says.
This is why she is adamant South African companies should have a standardized policy in place for cancer patients and survivors. This includes options such as extra leave days for treatment, as well as a proper structured support for reintegration of survivors back into the system.
“Companies really need to wake up to the fact the two occupational diseases that are going to affect them in years to come are cancer and mental illness,” she says.
Currently, Swanepoel is working towards providing the necessary support to other cancer patients battling the disease.
Johannesburg-based oncologist Dr Omondi Ogude says the pressures in the workplace can affect cancer patients based on residual side-effects and they may take a couple of months to disappear.
“There is a cognitive issue that some patients get which is called a ‘chemo brain’. They have short-term memory, where they may forget people’s names and it takes some time for some people to recover and unfortunately it is not some well-described or written-about side effect but patients complain about it a lot especially after the first couple of months of treatment,” says Ogude.
Ogude adds that cancer patients may struggle to be productive in their jobs after treatment so he suggests extensive communication between oncologists and corporate companies for a better understanding of the disease.
“The best aspect is interacting with the doctors and the patients from the get-go to understand what the nature of the problem is and how long they are going to be on treatment. And also understand the potential side-effects that are expected,” he says.
He also suggests companies have realistic timeframes and goals regarding when the patient would be at work and how they should be reintegrated just as they would with an employee who has been in a car accident.
“I think one of the problems is that cancer patients don’t look as ill as people perceive them to be. They look normal and a lot of them might still have their hair after chemotherapy and because they look normal, people might have a very short memory about what they have gone through. But even though they look well on the outside, they might not feel well inside and emotionally and physically as well,” says Ogude.
He also says some patients may experience problems with their nerves, which could make it difficult for them to type.
“So it is about being conscious at work and understanding that they have gone through all of these things; so allow them to work partly at home,” he offers.
One in four South Africans is affected by cancer, according to Lathasha Subban, the Director of Tri-Core Specialist Advisory. The survival rate is only six out of 10.
“This disease is impacting our workforces and our families. The disease does not discriminate, and the awareness around the cancer needs more support and advocates. There is much work to do,” she says.
Subban, whose company deals with human resource management, business strategy, coaching and policy development within the workplace, says that in her experience, people with cancer stood the risk of being boarded off, needed more sick leave than the norm, and are worried as to whether or not their medical aid would be sufficient to cover their expenses.
“We realized that cancer was becoming more common in the workplace, and human resource managers and directors needed to understand that this disease was growing more rapidly, and it needed significant attention and planning,” says Subban.
She says that according to the Breast Cancer Control Policy by the Department of Health, South Africa (June 2017), breast cancer and cervical cancer are the leading causes of cancer-related deaths in South African women, together accounting for 38.5% of all cancers diagnosed in women.
“We also found that people didn’t know how to handle the stress of someone related to them being diagnosed with cancer. And when they themselves have cancer, then the stress is heightened over the worry of costs and surviving the disease,” says Subban.
Subban emphasizes that as much as wellness programs are in place, cancer patients are left out as cancer is very different from other diseases such as HIV/AIDS.
“People diagnosed with cancer have no control over their illness, so employers need to be able to apply their empathy and create knowledge programs and awareness around the sensitivity and seriousness of cancer,” says Subban.
“Cancer is not like flu where you just go on antibiotics or you go and get a flu jab. Cancer does not only impact the physical body, it is a mental, psychological, personal and sensitive breakdown of a person,” she says.
This is why empathy is needed by both parties.
“To create the best solutions, always put yourself in the employee’s position and the employer’s position. You need to support the affected employee, whilst managing the fairness to other employees in the workplace. Companies need to find that middle ground in this aspect. Nothing stops you from creating those policies for employees who have cancer. The workplace needs that innovation and companies should lead in this respect.” says Subban.
Addi Lang had a booming business supplying talent to advertising agencies until she was diagnosed with stage three breast cancer. After undergoing chemotherapy and mastectomy, she stopped going for tests when her last results were unclear.
Now, she is on a mission to spread awareness and about treatment options available through the Forever Changed Global Awareness Campaign, which she has co-founded which her partner David Salomon. The campaign serves as a roadmap for newly-diagnosed cancer patients.
They are working with the SA Board for People Practices (SABPP) and global organizations to change the legislation around people battling with cancer in the workplace.
“In South Africa, there is no formal policy for cancer patients in the workplace. Whereas, in the United Kingdom, cancer is a disability in the workplace, it is recognized and acknowledged. But in South Africa, it has not been on any one’s agenda, until we reached Parliament, after our recent press conference,” says Lang.
Lang and Salomon have developed a corporate program accredited by SABPP called ‘Live Life Deliberately’ and is a wellness solution within the Forever Changed Global Awareness Campaign.
The program involves intervention with managers and line managers who need to understand what the cancer journey is (from diagnosis to treatment and then reintegration) and the impact on companies.
The purpose is to prevent employees from collapsing after diagnosis, and offer step-by-step solutions for the company in developing policy for chronic illness and cancer-specific programs.
“If no one in your company has been touched directly by cancer, it is not going to be an important item for human resource to address; it is like an elephant in the room until somebody in your staff has cancer, and then it is too late. We are saying companies need to be proactive instead of reactive,” she says.
She added that there are financial implications as well for the company.
“Because now the company has got to start getting other staff members to cover [work not done by the cancer patient] for them,” says Lang.
Annually, more than 100,000 people are diagnosed with cancer. The Lancet Medical Journal indicates that South Africans can expect to see a 78% increase in cancer cases by 2030.
According to the World Health Assembly Cancer Resolution event held in Switzerland in 2017, cancer is estimated to cost world economies as much as $1.16 trillion annually. They project the figure will grow exponentially if action is not taken now to reduce the spiralling growth in the number of cases and the impact on both individuals and healthcare budgets.
“The greatest financial and human impact of cancer is felt within low- and middle-income countries, where only 5% of global resources for cancer prevention and control are spent,” read the outcome of the assembly.
Claudelle Naidoo, Head of Insights & New Business Director, MediaCom South Africa, says it is the responsibility of organizations to be active in dealing with cancer in the workplace.
“Every organization should put their people first and in doing so, having a process to deal with serious illnesses in the workplace should naturally be in place. This will empower any organization to deal with the situation and be able to assist the employee in the best way possible without compromising the business,” says Naidoo.
Cancer awareness in the workplace has increased and it now has the attention of parliament. How soon effective policies will be formulated is the question, before time runs out for most patients.
One thing is for sure, warriors such as Lang and Swanepoel will keep up the fight for their seat at the table.
What needs to be done?
• Acknowledge the concern
• Get the stats in your workplace
• Start educating and sensitizing
• Look at your policies
• Look at the stress levels and causes
• Accept the responsibility that cancer is real and common
• Look at affordability – pay and medical aid
• Quality of life
• Value and support
• Be aware