In honour of World CML Day – September 22 – the Canadian CML Network is featuring the stories of people whose lives have been forever changed by CML.
When I decided to write this, I wanted to focus on the lessons learned from my (our) experience through the more than four years following my CML diagnosis. It took a long time to get here from there, to where I have actually, and finally, accepted that life has changed for me and for us. It is “our” journey because it has profoundly affected both my husband/caregiver who, without question, always puts my needs first, and our adult children, who are very sensitive to how I feel physically and mentally.
The acknowledgement and acceptance that things have changed came much earlier for my family, while I continued to hope for the return of the “old” me. This could be part of the denial that comes with a cancer diagnosis. When my treating physician, however, advised us that newer oral cancer drugs would allow me to live a normal life, I assumed that meant my life previously, and that this early period of cancer would only be a blip on the screen.
It was almost 18 months later, when physical and intellectual limits were persisting, that I was told by the doctor that there is always a “resetting of the clock after cancer.” Hmm, that advice would have served me better at the beginning in managing my expectations and frustration, rather than the comment that I heard soon after diagnosis: that I would not be able to use CML as a reason for not returning to work.
Despite repeated assurances from work that my job would be there when I returned, my career essentially ended very soon after I went back to work seven months after diagnosis. Organizational change was the reason given, but there were indications of doubt that I could now meet the job’s demands with my illness. This was a major blow because I had enjoyed my work and a successful return to it had been my goal through recovery. It would be a sign that normal life had returned; however, it was an opportunity denied, a decision made by others. I was put in the proverbial corner.
My GP strongly advised me to leave the workforce, which I did, sad and angry at the lack of humanity and consideration after 33 years of committed service. In many respects, what I saw as callous treatment by my employer was more demoralizing than dealing with the cancer itself. It took me a long time to get past the bitterness that I felt.
Over the years, the single most constant aspect of dealing with CML, and the medication to control it, has been managing the daily fatigue. Fatigue seems to be the almost universal side effect of the medication and it is slowly being accepted as such. I have learned to disregard some views of professionals that I simply need to push through my fatigue and press on, exercising to improve my stamina. I have found that if I do too much, I pay for it physically and mentally for days or even weeks. I have had falls and have cut myself with kitchen knives because of fatigue. My family has endured long angry funks because I pushed myself too far, doing more than I should. I have learned not to drive when I am tired and to accept my husband’s offers to be my chauffeur.
Managing my fatigue by limiting my activity level is an ongoing challenge. I want to do things and discerning the tipping point of doing too much is sometimes difficult. I know now that no matter what anyone says, I must only do what I feel comfortable and safe doing. This is not to say that I am housebound. We have been able to take trips, for instance, visiting warm places to escape winter for a few weeks or spending Christmas with our daughter in England, but we always build in periods of rest.
Those of us with CML are reminded daily of our illness: the need to take chemotherapy drugs. In my case, this is done twice a day, with two three-hour periods of fasting. Even with this daily reminder, I am fortunate that I do not have pain and my CML is well controlled.
It has been more than four years after my diagnosis, and I am at peace and grateful for all the good things in my life. My husband and I focus on the little things: enjoying daily life and each other’s company; having meals together instead of me returning home from work drained, often after 8pm; taking leisurely walks as my energy allows; and tending to my garden. We have good friends and a wonderful family: a daughter who has been teaching in England with whom we FaceTime daily, and a son nearby with his wife and our precious new grandson. It doesn’t get any better.
So what have I learned over the past four years? I have learned that post-diagnosis I had to go through a process. A friend has said that cancer changes everything and it helps if you can recognize and accept that fact early on, and try to recover from grieving the loss of your past life as soon as possible. I have learned that work is work, and nothing more. I have learned what my father said is true: “plan for the future, but don’t count on it.” Therefore, trite as it sounds, live for the here and now and wring some joy out of every day. I have learned to be happy for what I can do and not to lament what I can no longer do. I, like many others, have previously paid lip service to these and other of life’s truisms. They mean so much more to me now.
Theresa Harvey is based in Ottawa, Ontario and has been living with CML since 2012. She can be reached at firstname.lastname@example.org