THE COMPLEX STATE OF CANCER SURVIVORSHIP

The month of June is my father’s birthday month. Therefore to me it represents strength yet humility, loving nature and full of nurture, intelligence and tremendous wit, adaptability but non-conformity and much more. As you can see I am my father’s greatest fan. Which daughter isn’t? Those poor souls who went to boarding school with me know how I would fuss around on June 6. However, June is also special in that we celebrate an important group of people called cancer survivors who also display a great amount of tenacity and often share qualities with my old man.

This month I hope to feature some survivors in the column and give them a platform to say what surviving cancer means to them and what ‘having that second chance’ has done in their lives.

There are so many definitions of cancer survivorship. The most common assumption is it means living without traces of the disease after treatment. I beg to differ. Survivorship begins with the diagnosis of cancer. It can describe the state of living with the cancer (acute survivorship), living through the treatment of cancer (extended survivorship) and living beyond active treatment (permanent survivorship).

As per title of the article survivorship is a complex state. A diagnosis of cancer can never be good news. Its always bad news and as such we expect the patient and those who love the patient to undergo the known stages of grief. The five stages of grief are denial, anger, bargaining, depression and acceptance. How long each stage lasts and how each individual and their family decides to go through these stages differs. Denial can begin as early as pre- ‘official’ diagnosis. You know something is wrong – a painful lump that keeps growing, unusual bleeding in between periods or after menopause, difficulties in urinating coupled with blood, constipation alternating with diarrhoea, blood in stool, that cough etc. You know something is seriously wrong but you delay the inevitable truth. Then comes the anger. Why me? Why us? Why now? Ultimatums- let me just die. Don’t waste my time. Followed by bargaining. Why not me Lord after all I am your servant? Let me be a testament of your goodness if I survive. Or I have enough money to buy me the best treatment. When full reality sets in that all humans are created equal depression may set in. Apathy to any interventions. And lastly acceptance. Acceptance is the critical stage where survivorship kicks in. Once a person reaches acceptance whether they have curable or incurable disease they live each day of their life as a survivor.

Due to the nature of my work as you can imagine I meet the wonderful men and women who are cancer survivors. People who have decided to turn this ugly disease into a beautiful story. I have written about one such cancer warrior Mrs Patricia Jere, MHSRIP, who survived cancer in every sense of the word by establishing the Patricia Jere Cancer Foundation. Another amazing cancer survivor who I hope to feature this month is Ms Udie Soko. A two-time cancer survivor, CEO and founder of Zambian Cancer Society.

Cancer changes people involuntarily. The treatment leaves its mark uninvited. Issues survivors have to deal with are both emotional and physical. Relationships whether professional or personal always take a twist. One survivor pointed out to me that society needed to acknowledge that she was a survivor not a victim. As well intended the help she was receiving was, she felt suffocated by sympathy.

In the work environment sometimes being a cancer survivor means being cured but not being able to return to the job that they had before due to limitations after treatment. It is not rare to hear survivors complaining that colleagues look at them through a suspicious lens as people who want to get off scot-free.

Recently I had a client whose supervisor was particularly harsh on him as he chose to work through his chemotherapy and only took days off when things got really bad. He was denied any further leave for the rest of the year and he was told choose either to be present or absent.  He had been at fifty percent productivity for half the year now. How could this supervisor not see that my client’s way of coping with the disease was to try and maintain as much functionality as possible? Just sitting at home could have pushed him back from acceptance to depression! I would say better fifty percent rather than zero percent.

Some day as Zambia we need to formulate a cancer patients’ bill to work towards passing an Act of Parliament on how things relating to sick leave and benefits with this dreaded disease can be dealt with. Unfortunately cancer treatment is not a once off. It can last months even years when we talk about hormonal interventions and targeted agents. Employers need to embrace this.

Its not just livelihood that gets affected by cancer its also personal relationships. Of course there is the obvious love relationships that can go down due to cancer. Man and wife ceases to be, as one takes care of the other like parent and child or brother and sister.

However, platonic relationships also suffer and this leaves people feeling very lonely. Friends sometimes stop interacting with the patient because they simply don’t know what to say. They fear trivialities, forgetting that the core of human nature is need for love and acceptance and all else is secondary. Have that uncomfortable conversation. Face our mortality as humans. Speak about it. The only power we have in these situations is over our words, so use them.

Physical appearance is also affected. I have had many patients who at the height of their treatment embrace their new look and come smartly dressed and made up for their treatment sessions. I in turn always try to look my Sunday best for my patients every day of the week. They deserve it. Cancer warriors. It is not that the battle is lost; it is how we choose to loose the battle.

The period after treatment is not any easier. My extended and permanent survivors talk about the nervousness they feel before each and every review. How do I know it’s not the cancer coming back? Some of them talk about the shame should they have a recurrence. The truth is you have nothing to be ashamed of if the true definition of survivorship is taken into consideration. From the day you accept your cancer diagnosis you are a survivor. You have taken cancer by the horns and said I will control you not vice versa.

So this month of June let us celebrate our cancer survivors. They deserve all the praise.

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