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My Story: A Cancer Caregiver’s Perspective

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My love story was a whirlwind romance; my husband and I met and married within a year. Ups and downs were many, from financial issues to difficulty in conceiving a child.

After seven years of marriage and a host of fertility treatment, we welcomed a bouncing baby boy — the light of our lives. Our next challenge; our miracle child was diagnosed with autism at age two. We took this in stride. We embraced the fact that our son is a special child on the spectrum. He just experiences the world differently.

From Miss to Mrs

Through it all, my husband was always my hero. What came next, hit us like a ton of bricks. My husband was diagnosed with stage-3 colorectal cancer. My hero and rescuer needed to be rescued. I watched the strongest, bravest and fiercest man I know, turn into a patient that was poked, prodded and subjected to a multitude of tests, only to have his spirit broken by each doctor we met. To say it was a difficult time would be an understatement. 

Never did I imagine that I would go from Miss to Mrs to Special Needs Mother to Cancer Caregiver in a span of 9-years. How did I cope? Here is my honest answer: I just did because there was no other option. I decided to put together some salient points from my journey, who knows it might help someone else out there.

Desiree with her heroes. Photo credit: White Angel Photography

Asking for help

There is no shame in asking family and friends to lend a helping hand in times of need. I had an incredible support system. In that moment, I could not think twice but to just ask for help. Between my parents, my sister, and my nephews (grown-up boys of 16 and 18), I was able to accompany my husband for most of his treatment and doctor’s appointments.

Prioritising my presence

While my support system was (and still is) awesome, everyone has their own lives to lead. There were times when I was not able to accompany my husband for treatment, and it broke my heart every single time. Occasionally, other family members accompanied my husband, but on many instances, he went on his own. In retrospect, I believe that not treating my husband as a patient all the time helped him get back on his feet a lot faster.

Always taking his side

My husband’s case was complicated, but I stood by his choices! No matter how many doctors told us that his only option was the colostomy bag for life, I fully supported his decision to explore options. Snide remarks and sarcastic comments were aplenty as we searched for alternatives.  This was one of the hardest parts for me as a cancer caregiver. 

My husband’s relentlessness finally led him to find a doctor in India who could perform the surgery, and avoid the permanent colostomy bag. 

Desiree’s husband fought his cancer to enjoy many more precious moments with their son. Photo credit: White Angel Photography

Planning for my son in my absence

My husband underwent two surgeries in India. We had to leave our son back home as my role as caregiver in a foreign land took precedence. Luckily, my support system was ever ready, but I still had to prepare them ahead.  At times, changes in routines upset my son, so we had to transition him to his alternative routine. We did some dry-runs of sending him to school in different cars with different people and planned solutions to mitigate meltdowns. I created lists, schedules and had family meetings to plan everything out. Planning was no easy feat, but the hardest part was missing my son.

Taking a break for myself

I am not ashamed to admit that  I took many time-outs for myself. Whether it was just an hour having lunch or coffee by myself or taking a drive to decompress.  My daily guilty pleasure is Netflix. This is how I wind down every day. I think all cancer caregivers should take time for themselves regularly without feeling guilty or judged.

What helped me most?

Family and friends who could not visit us often, called and sent messages regularly to check-up on us. I always took the time to reply.  Along the way, I made some new friends, rekindled some long-lost friendships and ended some toxic friendships. I am happy to have the love and care of those I still call family and friends today. What helped me the most? Those who reminded me that I needed care too. Caregivers should care for themselves in order to be at our best.

Desiree with her family support system

Needless to say, this whole experience changed our lives.  We stood strong together and did not let cancer beat us down.  My husband is now free of the colostomy bag, although he still needs close monitoring and tests every six-months. We are thankful for each day we have together as a family.  No one knows what the future holds,  but it is important to always stand by the ones you love, live in the present and learn from the past.

 

Desiree Kaur was in PR for over 8-years until she found her true calling in the education line. After her son was diagnosed with autism, she decided to pursue her Masters in Special Education. She enjoys writing and advocates inclusion for children of all abilities in every little way possible.

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