Blood-Cancer.com Turns 3 🎉
Three years ago, Blood-Cancer.com was born into existence. In three years we have built a supportive, resourceful, and encouraging community. As we continue to grow and age, our mission stays the same: giving those impacted by blood cancer a space to connect with one another while providing useful and digestible information.
What do we want for our third birthday you ask? We want to continue spreading awareness about blood cancer and the impact it has. So we asked our community members: What does it mean (physically, emotionally, socially, etc.) to live with blood cancer?
Here's what they had to say.
Living with blood cancer
It's literal to say but having blood cancer means living with it. As one community member said, "I live with it, it's always there." A blood cancer diagnosis impacts every aspect of your life, particularly your body. One of our community members shared "that my body, without my choice, was turning on me and my immune system." Another community member added, "I get so frustrated at myself expecting to feel better magically but I realize I have to live with it." Because of the nature of blood cancer, explaining living with it is difficult. "Some people don’t understand why there isn’t a tumor...it can be turning to explain it."
The other side of living with blood cancer is navigating everything else that comes with it. "Navigating symptoms, tests, appointments, side effects and doing my best to navigate finances, relationships, and the workplace."
Then there's also the idea of blood cancer being an invisible illness. You can't see it just looking at you so many people don't understand that you are living with it. "You may look ok on the outside it is difficult or unbelievable for people to see that you are sick on the inside with all kinds of things are going on." Another community member also added that "there are not really any obvious things and people think you are fine when you don't feel fine at all." It's difficult to live with a disease no one can see; "everyone says, oh, but you sound good or look good...they don’t have a clue!"
Living with blood cancer is difficult, to say the least. It means living with something that attacks your immune system, it means explaining what it is consistently, it means figuring out new ways to navigate through this new normal. To put it simply, "blood cancer turns your life upside down." "Everything gets tested. It’s a roller coaster...it’s a tough ride to endure."
The most common answer we got to the prompt was that living with blood cancer is physically exhausting. Fatigue being the culprit at large. With fatigue "there are days where you feel a Mac truck hit." Another one of our community members describes their fatigue as "draining in every way and those around me have no idea the amount of energy it takes some days to do just the smallest of things."
Fatigue is debilitating and frustrating. It can feel "like you can't get energy no matter what treatment or amount of sleep." And not only is it tough to manage by itself but there's also the fact that people don't understand fatigue; "what seems like laziness to others and often to myself is pure fatigue."
And there's also "the bone pain that's a kicker." One community member says that the "bone pain is so bad some days you can hardly move."
Emotionally draining and lonely
Aside from the physical toll blood cancer takes it also means being emotionally drained. "Emotionally the impact is also rough because you never quite know what you are in for each day in terms of symptoms, mood, and the ability to get things done." Another community member shares the same sentiment expressing that it's "exhausting mentally..always following the numbers...always ups and downs."
Having blood cancer can be lonely. Many of our community members shared comments like "it is very isolating" and " at times it's very lonely." Another community member added, "that it is common for friends and loved ones to distance themselves and sometimes run away entirely." And loneliness isn't the only emotional battle, there's also the obvious feeling of fear. Fear of the unknown, scanxiety, living with a terminal disease, and so on. "It's very scary and powerless" one community member shared.
Staying strong and hopeful
Staying hopeful and appreciating life were constant themes in many of our community members' comments. They shared that having blood cancer means that "you start to appreciate everyday little things" and "take advantage of the time you have." One community member said that "after going through cancer, you appreciate everything because tomorrow is not promised to anybody." Essentially, "having blood cancer is a reminder not to take things for granted."
It also means having "to be strong and hopeful" as well as "fighting day by day." Living with blood cancer is a reminder "to be kind to each other and live a productive life despite what's in front of us." It means "don't let go of the rope, [because] there's still time length to make it over." As another community member shares, they were "able to defeat the intruder and become an advocate for other people who are faced with a blood cancer diagnosis...not today, cancer."
So what does it mean to live with blood cancer? All of the above and more. As one of our community members said "being diagnosed with blood cancer means humility, strength, courage, resilient, fighter, tough, brave, love, appreciation, thankfulness, grateful and so much more."
What does living with blood cancer mean to you? Tell us in the comments below!
Have you used CAR T therapy as a treatment for blood cancer?