Cancer patients talk about the kinds of independence they’ve lost because of their disease

Recent studies have shown that cancer pain is associated with poor employment and financial outcomes among survivors.

Additionally, some cancer survivors have shared how their fear of cancer recurrence has a hold on their lives, so much so that they feel like they need to actively “declare their independence” from their cancer.

To learn more about how cancer-related pain and long-term side effects affect a patient’s independence, CURE® polled its audience on social media.

In our weekly #CureConnect question, we asked, “Has cancer-related pain or side effects from cancer treatment affected your sense of independence or that of your loved ones?” If so, how?”

When pain prevents mobility

“Radiation-related effects on my ribs and chest wall, as well as my hip, induced significant fibrosis limiting my movements and a source of constant pain. My activity levels are reduced due to tight/fibrotic tissue and pain. It hinders my ability to do certain household chores (and causes me to) move more slowly. (It) takes me a lot longer to accomplish everything. – Carolyn Leigh, a patient living with metastatic breast cancer.

“I have no energy from immunotherapy. I have so many different side effects, every three weeks there is something new. It’s very difficult. I’m up for a few hours, then down. (I can) barely climb stairs at night. -Becky Jahns

“I took two different aromatase inhibitors because of joint pain. (When I was on) my first (aromatase inhibitor), my joint pain was really bad. My new one is bearable. I also deal with a lot of radiation tightness. – Tracee Cole, a patient with stage 2 triple positive breast cancer.

“Neuropathy (and) bone (and) joint pain was constant! Walking up and down the stairs at my house was unbearable. There were days when I slept on the couch because it was physically painful to go upstairs. I used my fingers on my phone because my fingers were going numb while typing text messages. I had to get headphones because my hands (were) numb (while holding) the cell phone.

During four years of post-active treatment, I could only wear sneakers or step-in style shoes. I wore wedges once to a dinner party and suffered the rest of the night. It took almost 30 minutes for the pain to go away long enough for me to walk. The tightness on my left side from the mastectomy and the lymph nodes (which were) removed was ridiculous. The extreme limitation in range of motion and pain from physical therapy left me in tears. I always get random episodes of sharp pain in my feet, left armpit and at the implant site. – Tresha Barrett, a patient with stage 3 breast cancer.

Leadership and decision-making

“It definitely took away independence during treatment. Practical independence is back but triggers can still bring it to its knees and emotional independence goes out the window. Lymphedema means solo travel is over. There are also the guesswork decisions of the fog” – Debbie Legault, a breast cancer caregiver and CURE® contributor.

Learn more about Legault’s experiences with his daughter, who was diagnosed with breast cancer at 27, by reading his blogs.

“I no longer feel safe driving. (I’m) out of breath (and feel) numbness in (my) feet!” – Kim Shelhamer, ovarian cancer patient.

“Housekeeping is at the door. I am a little shy about driving long distances due to the pain and the feeling of being alone on the road. My pain and mobility issues are largely due to cancer, side effects and treatment, however, my mind is bigger!” – Sasha Bialock, stage 3 ovarian cancer patient.

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