The End or The Beginning?

We come back home from our last visit to the oncologist disappointed with his reaction but at the same time elated that our ordeal is done. Finally finished!! … so now what?!

I sat and pondered my situation. During the treatment, I felt somehow special. I was a “protected species” as someone undergoing extremely difficult times. People were sympathetic all around me and made me feel special.

I remember speeding through the streets of Toronto, driving back from the chemo treatment and wanting to get home ASAP. A policewoman stopped me and asked for driving license.  “Why are you speeding?!” she asked.  I didn‘t know I was speeding but I said – “I just finished chemo treatment, there was no driver available and so I have to drive myself. I want to get home to bed ASAP”. She looked at me with compassion and gave me back my driving license saying – “Go ahead, but slow down!”

But this aura of being special now that the treatment was finished was gone – I became normal just like everyone else. I finished my treatment and was pronounced by the doctor cancer free. Hurray!!

My family and friends were celebrating and encouraging me to share in the joy. My workplace wanted me back ASAP now that I am back to normal.

Yet…

It seemed to me that the adverse symptoms of treatment were now in full force. The treatments that lasted almost 2 years resulted in cumulative side effects, which I felt now unequivocally.  Of course, the side effects will be different and specific to each type of cancer and the treatments. Also, the level of the adverse effects will be different for different people. However below I have listed most common side effects for all patients undergoing chemotherapy and/or radiation[1]. What is even worse – these symptoms tend to occur in tandem:

Physical Symptoms

  • Pain 96%
  • Fatigue 90%
  • Anorexia 92%
  • Shortness of breath 70%
  • Insomnia 69%
  • Nausea 68%

Psychological concerns:

  • Depression 77%
  • Anxiety 79%
  • Anger
  • Grief
  • Frustration
  • Fear

Spiritual Distress

  • Existential concerns
  • Loss of meaning
  • Feeling of hopelessness

Other research[2] [3]mention fatigue as predominant side effect, which affects 80%-90% of patients.  It is not relieved by rest or sleep and has both physical and cognitive components. As my friends wanted to celebrate with me the end of treatment, my level of fatigue was such that I didn’t have enough energy to go outside of my home.

I was confused. I knew my memory was not what it was before and all I wanted to do was to sleep. I didn’t realize how depressed I was but I felt that my life was the pits. I felt terrible, I felt isolated and extremely lonely and yet nobody seemed to notice that. I knew I wasn’t as efficient as before, but I had no idea how long this state will last or what I can do to improve.

I found it very frustrating to deal with all the people around me. They perceived me as cured and yet I felt worse than I did during the treatment. My co-workers expected me to be like before — on the top of my work – yet I sat there not really knowing what I should do.  Life felt scary and hopeless and I felt helpless not knowing what to do.

When I heard my oncologist say at the end of treatment – “We did everything for you.  Now you can go and live your life”, I thought to myself – if this is supposed to be life then I would rather check out!

The end of treatment was by far the most difficult part of my cancer journey… I didn’t see the way out of the current state I was in. And there was neither recognition nor any help forthcoming to assist me in pulling myself out of this misery.  I was left alone, sick to the bone yet expected to feel “healed”!


[1] Solano et al. J Pain Symptoms Management 2006

[2] Cramp at al. Cochrane Review 2008

[3] Minton at al. Cochrane Review 2008

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