The journey after cancer treatment ends can sometimes be just as daunting as getting the diagnosis and starting treatment – but there are people to help and support patients as they get on with their lives.
It’s a known fact that once you are a cancer patient; you will always be a cancer patient. This is the reality that dawns on survivors of cancer when they reach the end of their treatment.
So says Linda Greeff, Manager of Oncology Social Work Services at Cancercare (previously GVI oncology) and a cancer survivor herself. “At a time when patients expect to feel relief having reached the end of their often gruelling treatment programmes, emotions of fear and anxiety can appear instead and leave them feeling overwhelmed and extremely anxious,” she says.
“Once the treatment has been completed, a new phase of surveillance and follow up care emerges. It is at this point that cancer survivors start realising they have to venture out without the regular interaction of their treatment team which can be a very scary and daunting prospect.”
The period following treatment should therefore be a time of empowerment and gaining new strength, says Greeff. It is a time when survivors need to adjust to the new “normal” and seek out new networks of support. They often feel very isolated because friends and families often think that their loved one will be “back to normal” and don’t understand the emotional shadow that cancer survivors carry with them.
Getting to grips with uncertainty
According Greeff, the period after treatment is fraught with uncertainty. The reality is that there are many things that are unclear including the status of a patient’s health. “One worries about the quality of the medical care you have received and question whether it was good enough, but you also think about how long you have to live. Even seemingly small things like how you cope with work or everyday stresses can become quite overwhelming. It really comes down to how you process or try to move past the experience of having cancer.”
Different individuals respond differently to uncertainty. Some find it hard to cope while others just continue living day-by-day – ensuring that they focus on the positive changes that are needed to feel more alive and healed, says Greeff. “This is what should be done but not everyone can do it. All these coping strategies are normal but if uncertainty is overwhelming it is important to seek professional help.”
Greeff says that there are also a number of excellent NGOs and cancer support organisations available to survivors of cancer. And this September the Cancer Alliance, an alliance of 22 NGOs, has teamed up with Cancercare to showcase some of these by hosting South Africa’s first-ever Cancer Survivors’ Summit to help survivors navigate this period of post-treatment uncertainty by providing them with the tools to address a wide range of issues from diet and exercise to emotional trauma.
Moving beyond coping – to wholehearted living
Speakers at the Cancer Survivors’ Summit will be oncology specialists and cancer survivors who have developed good coping methods that will empower survivors. One such survivor – and inspirer – is Cancer Journey Coach, Brett Simpson. Since beating his cancer, Simpson has gone on, amongst many other things, to climb the Himalayas, cross the finish line of an Iron Man event after 13 hours and 47 minutes of swimming, cycling and running and develop a skincare product specifically designed for people like himself who love the outdoors.
In 2007 Simpson, a passionate surfer all-round outdoors kind of guy, was misdiagnosed three times with a lip lesion that originally thought to be a fever blister/cold sore. Squamous Cell Carcinoma was the ultimate culprit and because of the uniquely aggressive nature of his specific case, he went into emergency surgery within 48 hours of diagnosis.
“The overtly aggressive nature of my case had my doctors consulting international head and neck surgeons on how extreme my second surgery should be to give me the best chance of survival. Leaving the decision exclusively in my hands, I finally got all my doctors into one room and only after I pushed them to imagine me as their son, did they advise me to choose an extremely invasive bilateral neck dissection.”
He says that the final treatment to ensure any rogue malignant cells were annihilated was radium treatment for 3 months – which stole his beard for good and taste buds for six months.
He believes that, physically, he healed to such a surprising extent that he almost looks the same now as he did before his surgeries.
However, it is the emotional impact that took far longer than six months for him to come to terms with.
“My life changed, I changed and I was suddenly exposed to my fear of death and, more surprisingly, my fear of living wholeheartedly.
I have spent eight years witnessing the surfacing of latent fear and pain that I suppressed because it brought extreme emotion and fear into my new, ‘non-life threatening’ life. It was just easier to avoid it! Only when I leaned into it and truly allowed myself to feel, was I able to let go and truly begin to live in new wholehearted way.”
Simpson firmly believes that the fallout from cancer can be overwhelming for both the cancer survivor and their loved ones. He says that most cancer survivors dig down and find coping mechanisms or fall into potholes of denial, feeling numb or checking out through addictive behaviours.
For this reason he provides Cancer Journey Coaching, because when one survives cancer, future dreams and goals change, as do priorities. Therefore, one of the significant benefits of coaching is that it helps clients clarify fears, concerns, worries, or challenges.
Simpson says; “What you need are simple assessment tools that allow you to identify what is working in your life, what isn’t working, and what changes you need to make in order to thrive- not just survive.”
Embracing the positive
“Any experience with cancer is no joke. However, often, amazingly positive things can result after all the trauma is over,” says Greeff. “Some cancer survivors say the realisation that simple things matter – a beautiful sunset or sunrise, a deep breath of clean, fresh air, good friends, supportive loved ones and the knowledge that life is special – can cause people to change direction, embrace the positive, and lead much happier, more focused and meaningful lives.
“My life’s work is to help more people get there more quickly.”
The CancerCare Survivors’ Summit on 10 September 2016 at His People Auditorium in Cape Town from 8:30 to 3:00 To book a free ticket, click here.