An open letter to a CML newbie

Part of hand holding pen and writing a letter

Dear CML Newbie:

I see that you stumbled upon my blog yesterday in your search for information about CML. Your exact search terms were: “cml terrified the drugs won’t work”. I don’t know anything else about you except that you or someone you love may be dealing with a CML diagnosis. I realize you may never seek out my blog again, especially since I’ve been on a cancer vacation lately, but I’m writing in case you do.

I had similar fears once, after the denial that I had cancer and the wondering how soon I’d kick the bucket. What kind of crazy doctor would tell me my diagnosis was a good thing because my cancer was treatable? I was utterly petrified, and it didn’t help when my first chemotherapy made me so ill that I landed in the ICU.

I survived that hiccup, but then my doctor prescribed another drug she asserted would have the same effect on my CML without the deadly side effects. I remember asking for a reprieve before I’d try it, but I needn’t have. That was over three years ago. I’ve suffered few side effects from this new medication, my health has stabilized, and my cancer cells have run for the hills. In other words, my CML is well under control.

Over time, you will understand that CML drugs are miracle workers. They may not cure our cancer but they sure keep it at bay. I have met fellow CMLers who have lived for years on these drugs, who are still leading full lives, and who traipse down to their hematologist only a few times a year. Maybe you’ll be one of these people.

But I don’t want to give you false hope. I am not a medical doctor, and your experience may be different from mine. Just know that my body was grossly compromised before my CML diagnosis and I have still had great success on my current drug. And I’m aware that new CML drugs are being developed all the time.

I can’t say I know exactly how you feel because I don’t. I don’t know what your life is like, whether you have the phenomenal social supports I’ve been blessed with or the incredible medical team I trust with my life. Maybe you are single, or divorced, or even married with children who need you. You may lack the financial means we have to survive on one income. I realize that I am lucky in so many ways, and I’ll hope that you are too.

Call on all the resources you have and tell them what you need, whether it’s a home-cooked meal for your family, a well-walked dog, or a listening ear. If your cancer centre offers counselling, seek it out. People will jump out of the woodwork to help you if you guide them. And if anyone’s words or actions are not helping, let them know. They can’t better meet your needs without your feedback.

Good luck and may your journey with cancer be long. Not every day will feel so scary. And trust me, if I can survive this illness, anyone can.

Annie

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4 thoughts on “An open letter to a CML newbie

  1. What a wonderful letter. Great advice and full of hope! I do hope the person reads it, and, if nothing else, a good message for anyone dealing with new frightening diagnosis. Thank you!

    Like

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