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Beyond Diagnosis & Treatment

Scans, tests, and treatment have ended. You have been given the ‘all clear’. You’re better now, right? Yes and no!

“As a human, there is a lot to learn in life, period. There is no instruction manual, no training and no real guide. You pretty much learn as you live. As a cancer Survivor, we get to write an extra chapter or two – how to live as a cancer Survivor. Let’s face it, it sure isn’t easy.” (Donna Stewart cancer Survivor)

It’s tough being a cancer Survivor. Many patients struggle to adjust as treatment ends and life pushes forward relentlessly. Those around them seem to expect them to carry on as usual, because they believe now that treatment has ended, everything can go back to the way it was. But cancer leaves a legacy.

“Cancer leaves a footprint, and the footprint for every person is different. It may be physical, emotional or spiritual. If the people in our lives understood just that, it would be so helpful.” (Barbara Abernathy, Ph.D and cancer Survivor)

Survivors may feel pressure from loved ones and employers to pick up responsibilities they weren’t able to deal with during treatment, where they left off, in spite of the fact that their physical strength and emotional balance might not be what it used to be.

They plunge back into life now that they have time to themselves again, wanting to make up for ‘lost’ time, often underestimating the toll treatment has taken on their bodies and minds.

They face each new day as best they can, but many patients find that they now have chronic side effects to deal with, such as extreme fatigue, headaches, neuropathy, bone or joint pain, changes in hearing, vision, and taste, digestive difficulties, dental problems, difficulty maintaining attention, remembering or verbally expressing themselves and emotional difficulties, including depression and post traumatic stress disorder. Treatment may also have caused early menopause, infertility, low sex drive or sexual dysfunction or involved the loss of a body part.

“I feel like I get up every day and put on an 80 pound backpack. I walk through the day with it, but it’s invisible. Then I come home, take it off, go to bed – and the next morning, I put on the invisible backpack again. That’s what its like to live with the side effects. Its difficult for people to remember that when you look normal.” (Barbara Abernathy, Ph.D and cancer Survivor)

Some patients miss the support provided by regular interaction with their medical team and from those who supported them during treatment. They find that they are scared to be honest with those around them about how they really are doing and how they are feeling, for fear that they’ll be seen to be looking for sympathy, when in fact they need their experience post-treatment to be affirmed.

“I think people feel that they must solve your problems. You can’t solve my problem. Be there. Be supportive. And, most importantly, listen.” (Barbara Abernathy, Ph. D and cancer Survivor)

As cancer Survivors begin their post-treatment journey they find that their priorities in life have shifted, their friendships may have dwindled, but become more substantial, and they are coming to grips with their ‘new normal’. The fear of a recurrence is always looming, and scheduled scans can bring on tremendous anxiety, a phenomenon known as ‘scanxiety’.

In loving memory of Dave Ulyate who passed away in 2019

Dave Ulyate, cancer Survivor, poignantly describes the journey in his ‘Ferris Wheel of Cancer’:

“I feel I’m on a never-ending ferris wheel ride. When you start off at the bottom, you do not have much of a view and life can seem so glum and dreary, full of anxiety for the ride ahead. You have been told – ‘You have cancer’.

Then the motor kicks in and you start to move, treatment starts – be it chemo, radiation and even surgery. The initial trip is all up-hill and suddenly you discover you have a fear of heights. The grim reality hits and starts to sink in. Despair takes a hold of you and you realise there’s no way out and that your stuck with this curse. Survival kicks in, and the warrior within tells you to hold onto all hope, faith and to have courage.

We now reach halfway, the in-between emotions state, will I or won’t I conquer this issue?

The wheel gradually lifts you up to the top, treatment is over and what a view. If you are fortunate enough you may be told – ‘We have it under control’. Elation takes over and you start looking forward to the ride down.

Then we reach the halfway stage, the only stage that has two halves, and doubts start tricking your mind, every ache or pain is met with fear. But somehow you overcome the emotions.

Slowly the wheel reaches the bottom and stops, for the individual cabins of those who are clear to leave, and they leave with an experience they will never forget.

But then there are those of us whose cabins don’t stop and we must continue the journey of ups and downs. I think especially of my fellow brothers and sisters who are caught in this eternal circle, yes we are family in a strange way , Warriors, Survivors and most of all Champions.”

Supporting You in Your Journey:

Each cancer Survivor is unique and CANSA is here to support you in your Survivorship journey. You are not alone.

If you need to chat to a counsellor face-to-face or join a support group, please get in touch with your local CANSA Care Centre, or if you would prefer to connect with other Survivors online, please join our Facebook Support Group: CANSA Survivors – Champions of Hope. There you will meet other Survivors who are willing to share their journey with you, and you can inspire them with yours also.

CANSA Tele Counselling can be accessed via the CANSA Help Desk on 0800 22 66 22 toll free, to make an appointment with a CANSA counsellor. Or send an email to the Help Desk via counselling@cansa.org.za – this is a confidential, professional, cancer-related telephonic counselling service to cancer patients, caregivers and their families and parents or guardians of children living with cancer. Counselling is available in seven languages (English, Afrikaans, isiXhosa, isiZulu, siSwati, Sesotho and Setswana) and is free of charge.