Patient Tips

I also use my smart phone to write in every single appointment, so I don't forget. I will do things to keep my brain active, such as learning a language and go grocery shopping without a list so I can help myself with recall. I also exercise. Keeping physically fit can help one feel better emotionally, so then chemobrain doesn't bother me as much as it can.

It is still a struggle for me, even 10 years after chemo. Just keep the mind and body as active as you can. My iPhone became my best friend. I keep all of my appointments (including my standing yoga appointment) on the phone calendar.

I did try the post it note route. The most important post it always got lost or was stuck to something so I started to write things down in one notebook. If I was out, I would record what I needed to do on the voice memo of my phone.

If a friend or relative asks me to help with something, I tell them they MUST remind me and the must NOT feel bad about calling me to remind me because quite a few times, I've promised to do things and completely forgotten. Now, I put it on the other person. I will be more than happy, just REMIND me. I do try to put everything in my calendar but some things just fall through the cracks.

I set my internet browser window to open to a blank page so I can't get distracted by some news story on my list of things that come up on my customized google page.

Numbers were a huge problem. I'm not so sure anymore because I stopped doing the high level accounting. I do still transpose them which is weird. I have to be careful with certain words. For whatever reason, the word: "fatigue" .... in my head, fatique...and now I'm careful with certain letter combinations. Writing sometimes flows another times requires ten reading before I'll pick up something that should have been obvious by the 2nd or 3rd read through. I enjoy writing so it doesn't bother me.

I have a horrible time staying on task. And a horrible time starting a task. And get overwhelmed when a "big task" has to be completed. I can't figure out how to break it into easier, smaller tasks. Plenty of times, I am WELL aware I'm on a deadline or I simply MUST do something and if I don't "have it" ... that's it.... I am going to have a friend come over to help me with a project sorting out papers.

That's horribly frustrating simply because I KNOW what I could do. Thinking on my feet to problem solve, multi task, answer emails.... check check & check.... and without mistakes-all at the same time. If this was a "gradual" loss of ability I would accept it far more gracefully. But it wasn't. It was like I ran right into a brick wall.

Haven't figure out how to solve that without medication and I don't want to go the adderall or provigil route. That's a tough one. Again, I can't even sit down for an hour every two weeks to pay bills. I have to set up auto bill pay.

I'm hoping a routine that is as simple as I can make it will help. I make sure I'm getting a good night's sleep and eat properly. I have my anxiety under control-between the yoga and a few coping mechanisms and a great therapist who I do see on a regular basis-sometimes weekly, sometimes skipping a week in between. Stress/anxiety are REALLY bad for that fog.

Stopped listening to anyone with a "solution." If there are three prominent doctors working at major cancer centers and they don't have an answer YET, and if the doctor who did my evaluation told me, "you've already implemented everything I would have suggested," there is no solution. It's just these "work around" solutions. I accept it and I hold on to the advice I've gotten from the medical people, "Do what you can, don't focus on what you can't." That is a problem for many women. If they can no longer function in the same capacity, a financial issue may arise. I am lucky that is not the case with me and I don't want to get on that path but I did want to acknowledge that I DO realize there are women who have suffered with salary issues.

I'm going to stop this one right there or I'll wind up writing a book!

You've hit upon a very important topic and one that will become more and more challenging as the number of heavily treated survivors continues to rise. At the time of my treatment the physicians admitted they weren't sure what kind of long-term health issues I would face but felt the only way to even hope for survival was very aggressive treatment.

Bone loss associated with chemotherapy induced early menopause is problematic. I've taken calcium, Vit D and tried to walk regularly in an effort to keep my bones strong. Unfortunately that hasn't been terribly successful but has helped some. I tried an oral bisphosphonate but developed esophageal problems. Given some of the issues with IV bisphosphonates I've been reluctant to try them and my insurance doesn't cover them.

As a nurse, I'm hesitant to add medication to deal with those issues unless there is no other choice. Joint pain escalated to the point of needing an anti-inflammatory agent but again, walking regularly does help. Hot flashes can be an issue. Again, I tried an anti-depressant for a while and decided to keep a dietary record to determine if there were dietary triggers and have found some success changing diet rather than medication. Getting adequate rest and hydration seem to help as well.

I now have extreme sun sensitivity so limit my sun exposure and when out always use a 45-60 SPF sun block, sun glasses, hat and sun-protective shirt.

Often it's hard to know if symptoms are treatment related or simple part of the aging process. Following extensive chemotherapy it does seem that survivors may experience unexpected consequences and physicians aren't sure how to manage those.

Keeping active has been useful for me and having an understanding oncologist who will listen and explore ways to help me deal with continued questions related to my treatment. You've hit upon a very important topic and one that will become more and more challenging as the number of heavily treated survivors continues to rise. At the time of my treatment the physicians admitted they weren't sure what kind of long-term health issues I would face but felt the only way to even hope for survival was very aggressive treatment.

Bone loss associated with chemotherapy induced early menopause is problematic. I've taken calcium, Vit D and tried to walk regularly in an effort to keep my bones strong. Unfortunately that hasn't been terribly successful but has helped some. I tried an oral bisphosphonate but developed esophageal problems. Given some of the issues with IV bisphosphonates I've been reluctant to try them and my insurance doesn't cover them.

As a nurse, I'm hesitant to add medication to deal with those issues unless there is no other choice. Joint pain escalated to the point of needing an anti-inflammatory agent but again, walking regularly does help. Hot flashes can be an issue. Again, I tried an anti-depressant for a while and decided to keep a dietary record to determine if there were dietary triggers and have found some success changing diet rather than medication. Getting adequate rest and hydration seem to help as well.

I now have extreme sun sensitivity so limit my sun exposure and when out always use a 45-60 SPF sun block, sun glasses, hat and sun-protective shirt.

Often it's hard to know if symptoms are treatment related or simple part of the aging process. Following extensive chemotherapy it does seem that survivors may experience unexpected consequences and physicians aren't sure how to manage those.

Keeping active has been useful for me and having an understanding oncologist who will listen and explore ways to help me deal with continued questions related to my treatment.