The fundamental impact of cancer – a life Forever Changed

Originally Posted on MyMed.com

Receiving a diagnosis of cancer can fill anyone with an undeniable sense of dread. With the global prevalence of various cancer forms seemingly growing by the day, the notion that “this won’t happen to me… it happens to other people” is beginning to phase out. Cancer is touching more and more lives.

Think about it… you probably know at least one person who has battled this disease. But if it hasn’t affected someone very close to you, how much do you really understand about the impact it has on a person’s life? Awareness campaigns like ‘Forever Changed’ are going beyond ‘knowledge is power’ initiatives, generating proactive plans that provide support where it is most needed.

The global scale of cancer

Cancer is spreading… It’s touching everybody’s life. Young and old, cancer is likely to affect each of us in some capacity or another at some point in our lifetimes, and for some, perhaps even on more than one occasion. It can happen to you. It can happen to a loved one or even a colleague. While not a very comforting thought, it is the stark reality that few can now ignore.

Trends through the years have seen the number of diagnosed cancer cases spike considerably across the world. Since 1990, newly diagnosed cases are estimated to have more than doubled. As one of the world’s most feared dread diseases, cancer is not just prevalent with millions of newly diagnosed cases every year, but globally the associated death rates are also concerning, especially in low and middle-income countries. In 2015 alone, The World Health Organization (WHO) attributed around 8.8 million deaths to some form of cancer. (1)

Cancer of the lungs, liver, stomach, breast and colon are widely responsible for these figures, and still remain highly prevalent today. Various other forms of the disease which are becoming increasingly concerning include bladder, cervical, prostate, uterine, ovarian, tracheal, thyroid, pancreatic, testicular, kidney, skin cancer and more. In some instances, survival rates have shown some improvement. Still, there is an urgent need not only to detect cancer early but also successfully treat the condition.

Preventative measures are just as important. With lung cancer as one of top forms affecting both males and females, tobacco use cessation could help to reduce global fatality rates by as much as 22%. Vaccinations preventing specific infections which may result in the development of certain forms of cancer, such as the human papillomavirus / HPV (an underlying cause of cervical cancer) and hepatitis B (resulting in cancer of the liver) are other preventative examples that could impact more than 1 million newly diagnosed cases a year. (2)

Reducing the risk and prevalence of cancer is not just necessary to preserve quality of life at an individual level. It is also about reducing the global impact on the world’s economy. Currently trillions of US dollars are spent treating the disease within health sectors globally, and the prevalence of cancer is not subsiding, even though advancements in treatment technologies are contributing to improved survival rates in many instances.

While the focus lies on prevention and treatment, not much is being done to address the human aspect of the disease, an important factor that is often lost when weighing odds, options and costs. One woman is working to change that…

The ‘Forever Changed ‘ Global Awareness Initiative

‘Live life deliberately…’

Forever Changed Global Awareness Campaign logo (Branded Communication)At a human level, cancer fundamentally shifts your very existence as a person. In an instant, the building blocks of your life and that of the future you may be dreaming of weaken. “Will I survive this?” “Is this how I am going to die?” So many of us view such a diagnosis as something which will undoubtedly threaten our lives. The reality is, that for many, it does.

With such high prevalence and fatality rates, anyone on the receiving end of a cancer diagnosis often fears the worst. Millions have already lost their battle with cancer. Receiving such news pierces straight through you. Where do you find the strength within to ‘begin the fight’ to get the better of this disease?

For one South African woman, a diagnosis of breast cancer provided considerably more than just a nudge to not only emerge victorious in her own battle, but also to proactively involve herself in the journey of others in overcoming the illness.

Addi’s story

Performing arts professional, Addi Lang received her diagnosis in June 2014. It all began with a medical check-up concerning a niggle in the breast area. At first it was decided that a muscle spasm / cramp could be responsible. The niggling discomfort persisted, and more than a year later, breast cancer was diagnosed. Cancer within the breast had spread to the axillary lymph nodes (underarm). At this stage, breast cancer is considered metastatic or advanced – meaning that the malignant cells had spread beyond where they originated in the body. The issue should perhaps have been screened for earlier, and thus diagnosed sooner. The warning signals were there.

Initially the news, “You have cancer” triggered a response of shock. Addi lived several weeks in a state of denial before she could even share the diagnosis with loved ones. Only then could a process of acceptance begin and decisions on what to do next and how to cope could be made. Medical treatment involved a mastectomy and chemotherapy – two treatment options which can take an immense toll on anyone.

Possibly one of the most assertive steps you can make following a diagnosis is to acknowledge that your life is never going to be the same again, while making the choice to ‘fight for your life’.

“Change remains for a lifetime,” Addi had said at a press conference in Johannesburg on 1 October 2014, just a few months following her diagnosis. “I am living every woman’s nightmare… You can’t choose what happens to you. You can choose how you cope with it.”

Creating awareness for other people is what sparked an initiative she named, ‘Forever Changed’. The initiative, launched at the press conference in 2014, was always intended as a message of hope that also served as a warning to others. For Addi, there were challenges in understanding the disease that now seemed to hold the reigns of her life. There is an enormous amount of information out there, not all of it accurate and comprehensive enough. There is no set roadmap… There is no step-by-step manual addressing every aspect of the impact cancer is going to have on an individual and their life going forward.

“I wish there had been someone who sat me down and said these are your options,” she has said previously.

It was important for Addi to find her feet when learning to deal with her diagnosis. In so doing, she realised the importance of obtaining more than one medical opinion, listening to her body and trusting her own instincts too. She also realised that her own experience was not entirely unique – others were going though similar journeys. Learning more about breast cancer as a condition, and all of the intricate details about what treatment involved and the potential side-effects – some of which are completely unexpected, challenging and even debilitating – was something she did on a daily basis following the day of her diagnosis. Every day was a learning experience.

“During my treatment I woke up one day and couldn’t walk. I had developed fractures in my leg and was in a wheelchair for weeks as a result of having chemo,” she explains, highlighting just one of the side-effects of her treatment she had not expected to experience.

Learning all you can in order to make informed decisions is a challenging aspect of dealing with the disease. For Addi, this is one area where she made the decision to stand up and speak out, creating a platform, along with her life partner, David Salomon, from which awareness can be generated in order to strengthen others through their own experiences.

A message of hope

‘Forever Changed’ is so named because once you receive a cancer diagnosis, life as you know it will shift forevermore, whether you’re accepting of it or not.

In contrast to the wave-like effects that impact a person emotionally and psychologically, as well as the various side-effects of medical treatment, this global awareness campaign was developed in order to ‘create a butterfly effect’, a reminder that beauty can emerge from great adversity. As the campaign symbol, the butterfly embodies hope, sharing a message that there are ways to achieve a cancer-free existence again. Armed with this hope and comprehensive knowledge, one has better chances of finding strength from within.

Addi’s voice, as she stands up and bravely shares her story, embodies the strength of a warrior. She believes that all individuals battling cancer are not just potential survivors of their disease, they are warriors striving to outlive their debilitating illness.

The campaign is about honouring warriors who are on the treatment journey, as well as those who have lost their battle. It’s also about providing support where it is needed, to share knowledge and lessons learned so as to disable the initial overwhelming thoughts and feelings experienced after a diagnosis and to enable more informed choices and help people to better understand how to turn information about the disease into action.

‘Forever Changed’ is about being proactive and establishing a positive way to cope with combatting cancer. Through positivity, meaning and purpose can be restored.

What are some of the important messages Addi would wish to share with others going through a breast cancer diagnosis?

“As the campaign has grown, more and more people have reached out to us. The main thing has been to encourage patients to find out as much as possible about their condition from their doctors. Then, once the shock of diagnosis has settled, research and understand as much as possible with a calm and clear mindset. There are many emotions that you will go through. Everyone reacts and copes differently. There’s no need to rush into surgery or other forms of treatment. Take time to absorb the outcomes of all your decisions, whatever they may be. It is a very personal decision, and only the warrior [patient] can make the decision for themselves. Yes, it does affect the family, but everyone will eventually accept the decision if the patient is the one who is happy with it,” says Addi.

On some of the biggest lessons learned, Addi adds, “Life after diagnosis has to carry on. Life after treatment also has to carry on. Ultimately cancer changes everyone and the quicker the warrior realises that life will never be the same again and accepts the change, the better. There are emotions you will experience consistently throughout the phases of diagnosis, treatment, recovery and then the life you return to when trying to find your new normal.”

Pictured guests and speakers (left to right): Radhi Vandayar, Rob Oosthuizen, Eve Machabi, Honorary Mr. Narend Singh (Inkatha Freedom Party / Chief Whip in Parliament), Advocate Anthony Mitchell - Chief of Staff (Inkatha Freedom Party), Addi Lang, Willem Hechter. Nizaam Holmes, David Salomon, Rod Cusens and celebrity Forever Changed ambassador Emmanuel Castis (Photograph supplied with permission from Branded Communication)

Developing ‘humanness in the workplace’

“Nothing is as ‘powerful’ as the human network”

– Rod Cusens, Director at The Foundation for the Development of Africa.

On 12 July 2018, Addi along with her ‘Forever Changed’ team of ambassadors hosted another press conference in Johannesburg, South Africa. This time around, one of her core focus areas was to address the ripple effects of how cancer can impact a person’s work life. Other focus points included newly publicised breakthrough’s in treatment procedures for breast cancer, as well as the legislative status of medicinal cannabis – a topic which has seen much debate in recent times in various corners of the world.

In the process of dealing with her own cancer journey, establishing the ‘Forever Changed’ global awareness campaign and learning about the experiences of others, Addi identified that workplace challenges had a negative impact on many individuals. Not all businesses around the world have ‘sympathetic policies’ when it comes to providing support to an employee dealing with cancer.

Cancer and the workplace

Workplace discrimination is a very unfortunate reality. Coupled with that, human sympathy can also wear thin down the line. No business has the right to end a person’s employment based on the news of a dread disease like cancer, however, the various changes in a person’s ability to perform at their best during treatment periods may ultimately lead to a breakdown in working relationships. In this way, a person’s job may end up on the line. A growing number of people affected by cancer are now advocating for the implementation of formal policies addressing cancer in the workplace.

Addressing various VIP guests and members of the media at the press conference, Addi touched on this need. “We believe that companies and individuals, as responsible corporate citizens, need to do more than wear pink ribbons. David and I have invested 1 460 days in our quest to discover and unravel ways of dealing with cancer… not only on a personal level but also in the workplace.”

Labour laws (formal government policies), human resource policies (within business organisations) and support programmes (wellness initiatives) all need to be addressed so as to better ‘speak to each other’ on a ‘human level’ that a person dealing with cancer would ideally need, either personally or while caring for a loved one. Currently, this is predominantly where the disconnect lies.

On one hand there may be a conflict of interests, for many corporations invested interest in the personal matters of their human capital is not as high on the list as the bottom line and profit margins. So, where do employers and employees meet in the middle when it comes to the very real issue of ‘cancer affects nearly everyone’? Not only does cancer affect members of the workforce, the domino effect can be felt at a level of business objectives too.

There are various organisations that have recognised the scale of other debilitating diseases such as HIV/AIDS and the effects this can have on the workplace. Adapted policies have been able to address the needs of affected parties. So, why does there appear to be a ‘dragging of feet’ when it comes to cancer? This is where campaigners such as those involved with ‘Forever Changed’ come in.

There is no way around the fact that cancer will place obstacles in the way of any person’s livelihood in some way or another. The labour laws of many countries do not specifically highlight practices which businesses can implement with direct reference to cancer. With the ever-increasing prevalence of this group of diseases, the argument is that surely there is now a need to sit down and openly discuss ways and means to better support people affected – on every level, from government to corporations and their human resources departments.

In the United Kingdom, corporate wellness policies do acknowledge cancer as a disability (Equality Act 2010) (3), enabling businesses to recognise the various levels of support they can provide to affected employees and their immediate families. Under the act, employees are protected against discrimination or even dismissal as a direct result of their illness.

Even without a formal policy, wellness initiatives can still be implemented, and some organisations are already taking this very seriously.

Corporate champions of the people

Mediacom is a media agency with more than 7 000 employees operating in around 100 countries. Their company motto is ‘People first, better results’. Once representatives had met Addi and David, it wasn’t long before discussions around cancer and workplace policies materialised into something useful. The company initiated a Live Life Deliberately Wellness Programme, originally developed by Addi and David as part of the next phase of their ‘Forever Changed’ initiative, showing that at an organisation level, beneficial policies can be implemented. It’s no surprise that Addi and David found some synergy with the South African arm of the organisation in their quest to drive awareness about the need for improved policy-making in the workplace, given the organisation’s motto. In Addi’s view, this partnership has opened a door in order to better set an example to the corporate world. Wellness programmes can go a long way in helping those affected, as well as others around them.

“With a “People First, Better Results” business model, it is clear to see why the need for a cancer policy in the workplace resonates so strongly with myself as well as Mediacom,” Mediacom South Africa CEO, Ashish Williams said at the recent press conference.

The Live Life Deliberately Wellness Programme is endorsed by the SABPP (South African Board for People Practices). The programme takes awareness about cancer to the next level by engaging stakeholders in how the disease affects a person during their illness treatment and recovery. Programmes can assist with a more comprehensive understanding of medical health insurance policies and provide counselling support for all parties concerned – including diagnosed employees and their respective colleagues. Counselling for managing the financial burdens and challenges surrounding the disease is another useful area of support, helping a person to better manage the cost of treatment.

From a business perspective, rights and responsibilities from both sides should be clear as this makes a considerable difference in promoting a healthy working relationship and environment. Simple considerations could involve:

  • A redistribution of workload
  • Flexibility of working hours
  • The ability to work remotely

Providing assistance where necessary in a manner in which neither party is short-changed is a sensitive issue, but it can be done. Programmes which are useful for an employee dealing with cancer should factor in support for readjustment difficulties, as well as any mental health challenges that may result from the experience as a whole.

The bottom line is that cancer affects an entire being and their lifestyle. Every aspect of a person’s life is going to feel an effect. It’s not just a physical or psychological challenge. Cancer impacts a person’s ability to function normally and such effects will have an impact, not only in the home, but the workplace too. The implementation of supportive guidelines and policies can surely make a difference that benefits all concerned.

Where to next?

In September this year, Addi and David have been invited to present their campaign and workplace wellness programme at the EAPA-SA and Pan-African Eduweek in Port Elizabeth, South Africa. EAPA-SA is a member of the international group, EAPA (Employee Assistance Professionals Association) – one of the largest organisations supporting employee professionals in the world, operating in over 30 countries.  Addi and David are also getting ready to present at the annual summit on Oncology and Cancer in the UK in November this year. Forever Changed is certainly reaching a more global audience, one gathering of individuals at a time.

With any cancer diagnosis, change is inevitable. As advocated by the Forever Changed initiative, a positive approach certainly can influence the outcomes of what that change ultimately becomes. In this way, a war of sorts can be won in the fight against the adverse effects of cancer.

References:

1. World Health Organization. February 2018. Cancer Fact Sheet: http://www.who.int/news-room/fact-sheets/detail/cancer [Accessed 16.07.2018]
2. World Health Organization. February 2017. 10 Facts about Cancer: http://www.who.int/features/factfiles/cancer/en/ [Accessed 16.07.2018]
3. Gov.UK. Definition of disability under the Equality Act 2010: https://www.gov.uk/definition-of-disability-under-equality-act-2010 [Accessed 17.07.2018]

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