How to battle late effects

ALLsoldier

Hello, I’m new. It’s been validating to know I’m not alone even if the posts are old. Sadly I can relate to so many of them. I’m a survivor of leukemia over 5 years dealing with a ton of late effects of treatment. I’ve gone through chemo, radiation, and a BMT. And I vaguely remember a 3 page list, front and back, of oral meds and injections that I had to do after all of that. I mostly deal with fatigue and cognitive issues but then there’s also the random body pain, heaviness, neuropathy, cramping, and nausea. My doctors have ruled out other causes of my symptoms but will not admit they are from treatment. I know they are 100% from treatment. I often leave my doctors’ appointments disappointed and frustrated because I should be grateful that I’m alive. But if I’m perfectly honest, I’m not. Yes I’m in remission but this is no way to live. I was a highly functional, active, and educated person prior to this and now I struggle with the simplistic things. I have a young child so just talking with other parents is draining and and defeating because I can’t explain what this is like when I look “normal.” I have a post-it that says NO just to remind myself not to put myself into situations that make the fatigue or cognitive issues worse. I’ve taken steps to try to improve things like braintraining apps, writing everything down, and conserving energy. I’ve tried working out when I feel good, but it puts me out 4-5 days of recovery. Does anyone have any advice for beating the fatigue? I know if I don’t exercise my body will ultimately shut down. But how do you exercise when your body feels horrible for most days? Also, what motivates you to keep going? I feel like I’m fighting a losing battle.

ALLsoldier

https://csn.cancer.org/discussion/comment/1716760#Comment_1716760

Thank you for the encouragement.

Rickg87

https://csn.cancer.org/discussion/326984/how-to-battle-late-effects

hi I understand. I had lymphoma many years ago and was treated with radiation to my pelvis area. As a result, I have muscle atrophy in my pelvis, gluts and legs. It slowly progressed over the last six or seven years walking become very difficult stairs are very difficult. I don’t know how much longer I’ll be able to do that.. depressing and like watching a disaster in slow motion. Fortunately I don’t have any pain, but I have such weakness that I don’t know how I’m gonna deal with possibly not to walk someday. It’s a very unusual situation and it’s hard to find someone to talk to that can help with acceptance and transition of lifestyle I feel you. Fortunately, I’m older and my kids are all grown so that must be difficult for you.. I feel the same about exercising. I know I need to exercise and I try to move every day and do some kind of exercise but if I push too hard, the recovery takes a toll. I try to keep my upper body strong in the meantime.

ALLsoldier

https://csn.cancer.org/discussion/comment/1724992#Comment_1724992

Thanks for sharing your story. Sounds like you are staying positive. Focusing on your upper body strength is a good thing. I was considering trying swimming again. I know it helped at one point in my recovery. I know I have to keep going and overcome the challenges of the long term effects. I hope you can gain strength as well.