Community Thoughts: Adjusting to Life with Blood Cancer

Once a diagnosis is shared aloud, life is never the same. So much changes in that moment. To move forward can be challenging; it can be a struggle to learn how you’re going to handle your day-to-day from here on out while tackling an illness.

To start a conversation about the biggest challenges that those with blood cancer face, we posed a question on the Facebook page. We asked: “What was the most difficult adjustment you had to make to your daily routine during your experience as a blood cancer patient?”

More than 75 of you weighed in, and here’s what you had to say.

“Constant fatigue with muscle weakness.”

Hands down, the number one difficulty named was fatigue. The extreme tiredness so many of you mentioned is caused by several factors. Blood cancer cells steal much of a body’s energy supply, leaving you feeling drained. Plus, over time, a decrease in appetite is going to lead to a loss of energy supply because you’re simply not getting in enough calories to function optimally. Many people talked about doing whatever it takes to feel better: from taking naps, staying hydrated, to finding new strategies to improve your sleep..

“Constant fatigue with muscle weakness. Top that off with daily migraines. I have vision problems and see waves of light and gray clouds at times.”

“The exhaustion and weakness. I have no stamina. I am in remission but constantly worry about it coming back.”

“The neutropenia (aka low count of white blood cells) and the constant fatigue—my quality of life has drastically changed! It’s an uphill battle daily. Only the strong survive. I don’t wish this so-called-‘good’ cancer on anyone! I wish someone that loved me could live in my body for a day because I don’t look sick but feel like a 90-year-old in my 49-year-old body!”

“Not working.”

A lot of you mentioned that it’s hard to accept that you can no longer work during this challenging time. Not only do we need to work to pay the bills, but, for many, a job gives a sense of purpose, and defines how we see ourselves. So, not only are you struggling to accept the physical complications of the diagnosis, but you’re also finding yourself in a crossroads of identity, perhaps trying to define who you are in this season of your life. Although it’s hard to find the energy to do so, this time away from work can help you discover who you are independent of your job.

“Not working. In remission, but currently have to do active chemotherapy for six months. Not being as active as I would like for my three kids.”

“Termination from my job of 26 years. Isolation from people.”

“Can’t work—and I loved my job!”

“No longer being strong enough mentally or physically to raise my daughter.”

Several of you mentioned that it’s a struggle to not be able to help your family as much as you used to. Every facet of life will most likely change as you deal with your diagnosis, so it stands to reason that life at home would look different as well. It’s hard to accept that we can’t show up for our loved ones in the same way we could before getting sick. Perhaps it helps to think about the fact that the best way to help your family right now is to take the best possible care of yourself.

“I’m so glad my kids are grown with spouses and families of their own. I couldn’t deal with this cancer and raise children.”

“The most difficult adjustment for me is no longer being strong enough mentally or physically to raise my teenage daughter.”

“Constant worry.”

Nothing’s harder to handle than having an overly active mind that keeps worrying, focusing on what could go wrong. Sadly, there are no gains, no benefits from worrying over a diagnosis. For some, one of the best tactics to release worry and anxiety is to journal three or so pages a day about everything on your mind. Committing the fears, the stresses to paper can help give your mind a rest from spinning and trying to find a solution.

“Constant worry and anxiety about it coming back. It’s changed me completely. Not a second of my life since this March have I not thought about it.”

“Constant panic and anxiety attacks.”

We want to thank everyone who opened up about what they’re dealing with. We know it’s not easy. But we’re grateful for everyone who participates and helps build this community of support.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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