Who Is In Your Support System?
Sometimes the support you find when diagnosed with blood cancer comes from unexpected places.
Diagnosis is unchartered territory
Nine years ago, it was unchartered territory for me when I learned I had a rare blood cancer called chronic myeloid leukemia (CML). CML occurs when chromosomes 9 and 22 "translocate," and no one knows why.
Honestly, I had never even heard about chromosomes 9 and 22 and all the other numbers. If it was covered in biology class, I guess I was daydreaming.
But, at barely 50 years old, I was told this was the leukemia I had and that it had no cure, no real "remission," but rather it could be treated with oral TKIs. At the time, there were far fewer options than there are in 2023.
How do you feel about your support system?
Treatment for the rest of my life
My hematologist/oncologist, who is a CML specialist, told me I would have treatment for the rest of my life. There are patients who are able now to go treatment-free successfully, even for a short time, but I'm not one of those people. Within a month of going off treatment for another medical reason, my rates of leukemia skyrocketed and stayed that way most of last year.
Patients also sometimes have to switch TKIs when one stops working or the side effects become too unbearable and/or dangerous. I'm now on my third TKI, which my doctor recently termed a "salvage," drug. It is the one used when you've had two other failures. That would be me.
Not a typical CML case
I have never been a typical case. When I was first diagnosed, my hematologist said that most of his CML patients are men over 70 years old who avoid doctors like the plague and turn up to see him when they are in dire health. So, I'm a special case; or "complex," as he's called it.
Contrary to what some might think, I'm not the type of person who wants to stand out in this way or be a special case. Quite the contrary. But to use an overused saying, "It is what it is."
What does this have to do with finding a support system? I'm getting to that.
My mind is protecting me from remembering those early days of CML, but I'm told I relayed the news via phone to most of my inner circle. I spoke to a few people in person, but it is all kind of hazy now.
Once I snapped out of the fog, I began to notice other people's reactions to my abnormal "new normal." Those commercials and TV shows with people rallying around the sick one are not always the case in real life.
It's sad but true.
Blood cancer can be a turn-off
I kept quiet about CML and tried my best to carry on working and maintaining relationships despite it I suppose. However, blood cancer (or any other cancer or serious illness for that matter), appears to turn many people off.
Sometimes, your would-be supporters take a hike. It could be they don't know what to say, how to deal with the situation, or they just don't care that much.
Over time, these people in the circle no longer want to talk, get together, or even do "normal," things with a patient. So, they flee. Even emails and texts go unanswered. The "L" word is rarely uttered around me.
And I tried to avoid talking about leukemia too. Until I changed my mind and started...then did a little bit more.
This is all a roundabout way of saying that it may take a cancer diagnosis to know who your real "people" are. Your supporters are the people who are not tied to you via a sense of obligation or because of memories. They are not your supporters based on the number of years you've known them or how close you may have been at one time.
Instead, supporters are the people who stick with you because they are strong enough to stand by you not only in good, fun times but also when bad things happen. They love you for you.
Focus on quality not quantity
After all these years, as more health problems and challenges seem to occur daily, my inner circle has gotten smaller. I can count on my hand the number of people who are my true supporters. And, that's okay. When it comes to your support system, focus on quality and not quantity.
I add the caveat that not everyone's situation will be the same as mine. Maybe some of you with a blood cancer diagnosis have a flock of people, an A-team, rallying around you. That's great.
But for those of you who don't, it may take more effort to find people willing to cry and laugh with you and hang on.
For me, I include my CML specialist in that league of supporters. I have to. He's really gone out of his way at times to be there for me when things hit the fan. He's very responsive when I have questions or concerns and has even met me at the cancer center on days when he is not working when there was an emergency. He's called to warn me when something pops up on my online chart that may upset or confuse me. So, that's one example of someone in my corner.
Then, there are the other people who I don't feel like I'm bothering when I'm talking to them. Things are not all rosy, unfortunately, and they are willing to hear the good with the bad. And I must say, I appreciate conversations that don't center around health matters.
Other ways to find support include joining groups either online or in person. People with shared experiences really "get" you and that's reassuring and can be like a breath of fresh air. You can form a little community.
Some questions to consider
- So, where does your support come from?
- How have you nurtured it?
- What were some of the challenges you had in order to retain relationships following your diagnosis?
I'd love to hear in the comments below.
Have you taken our In America Survey yet?