Reworking My Routine
People ask me how I coped. If you asked my mother, she’d say it was through God’s grace. She’s probably right. But I would add that all I’ve learned through my work also helped, along with all the therapy and reading I did. As an occupational therapist, I had supported a lot of people in difficult situations. As a caregiver support group facilitator, I had often discussed the importance of attitude, which proved extremely useful for me.
In order to make it through this journey, I refused to see myself as a victim, instead choosing to take charge of my life. I tried to find balance. My responsibility was to take care of myself, in whatever way I could. The challenge was to be creative and active in the process. How? By small, simple actions.
At the hospital, I built a routine for myself, just as if I were at home. Every morning, I got up and made my bed, showered, and got dressed—lipstick and wig included. At night, I changed into my pyjamas. I found hospital gowns depressing, and their open backs were definitely not my look. I made sure I felt good about how I looked. I made myself a schedule of daily activities: 30 to 45 minutes of exercise in bed, then some reading, puzzles, crochet, drawing, and Scrabble. TV only in the evenings, just like at home. And walks! For five of the seven months of my hospitalization, I was permanently attached to an IV, but I negotiated with the medical team to unhook myself for one hour every day. I used this hour to walk 4 km, outdoors whenever possible. It had a positive impact both physically and mentally. On top of that, the doctors always told me I would need to be in good shape to undergo a transplant. I often had dinner with my husband at the hospital cafeteria, which I referred to with a fancier French name. You do what you can to have fun!
Finally, my transplant was set for March 2018 at Hôpital Maisonneuve-Rosemont in Montreal. It was a huge deal, and yet the procedure itself was unbelievably simple, since it was just like a regular transfusion. But I wasn’t out of the woods yet. Given my condition, I only had a 50% chance of surviving. The journey continued.