Phases of survivorship

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Conceptualising survivorship

In oncology, we use words like survivorship, warriors, and winning the fight interchangeably. I grapple with these concepts because the meaning for each person can be different.

What does survivorship mean? Where does it start and end? Many days during treatment feel like the aim is to just survive the day; would that be a phase? What about the period before treatment, when you have biopsies and scans, not knowing? Is that survivorship?

This is unfortunately the reality of oncology, the more you ask, the more questions you end up with.

Am I living or slowly dying?

A question I often think about came up recently in a conversation, Am I living or am I slowly dying? and it took me to a place of realism that you often envy in others but dread when it might apply to you. Most of all it was heart-breaking.

There truly are no words that will calm those unsettling thoughts. That is why the biggest challenges are often in the mind and not in the body. Some patients are truly living; even if they are driven by the fear of dying. For others, they are slowly dying due to the disease.

Then you encounter a group that is in-between, they aren’t slowly dying but also not living, merely surviving day by day, often paralysed by fear or halted by side effects of treatment.

Irrespective of where you fit in, the secret is to find a way to live even when you feel like you’re slowly dying.

Phases of survivorship

Would you say that you’re surviving even when you’re slowly dying? Do you still fall within a survivorship group?

I believe that while there is breath, there is hope, however, I don’t believe in giving false hope. Therefore, categorising survivorship is so much more challenging. With that said, I would categorise the phases of survivorship similar to the phases which often carries the most trauma for patients in retrospect.

1. Diagnosis and clinical workup

This is always traumatic. No one ever wants to hear their name in the same sentence as cancer. Going for scans, bloodwork, seeing doctors for clinical workup in essence means that the reality of being diagnosed with cancer sets in, without knowing if it’s life-threatening or not.

2. Treatment

Another distressing period is finding out the severity of the cancer, proposed treatment, meeting your cancer care team, facing an unknown world which you probably heard bad things about, and needing to face this bravely while witnessing tremendously ill patients.

This counts for each treatment you go through: chemo, radiation, surgery. Needing to go through each, while your energy becomes less, emotions becomes more, and fears are elevated.

3. After treatment

Where to now? By this stage, as much as you want to run away, you may feel lost without all the support and the people you saw on a weekly basis. You are different, and your body is too. Families and society expectantly wait for you to now be cured and be perfectly fine the week after treatment. Unfortunately, nothing can be further from the truth.

Re-integration is extremely difficult. Emotions are often internalised after the fact when the body gets stronger and the world has calmed down. This also causes much confusion for family and is partly due to its unexpectedness and delay after treatment has been completed. The pressure to be okay is so high, and grief is never anticipated.

Then there is more

Following all these phases of survivorship, there is another life-long phase, finding a way for cancer not to take over your life, especially mentally. Being able to live life from scan to scan and not feeling like you can’t have a life because of it.

One of the saddest aspects is seeing how someone struggled through this journey, and when the time comes for them to live, they are so paralysed by fear that they don’t celebrate life. They don’t live. They go into survival mode. This was never the reason to take treatment, and overcoming that hurdle internally is extremely daunting and difficult.

Sunrises and sunsets

Every phase of survivorship is like a sunrise and sunset. When you’re in a sunrise phase, go out and live. When it’s a sunset phase, go outside and lie under the stars, and know that there can be no sunrise without a sunset.

Just breathe…the sun will rise again.

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