Chemobrain? Get Out the Pen and Paper

Started by SJH, August 02, 2016
4 replies for this topic
SJH

Member
558 Posts
Posted on
August 02, 2016
While undergoing treatment for cancer, many of us experience the irritating problem of memory trouble, which hampers recalling words, names and phrases that were once commonly known to us. I have also had trouble remembering specifics in my life, such as following through with a thought or an idea. This is what I call an overall problem with functionality. Hence, the much-used, catch-all explanation: chemobrain.

My side effects have ranged from poor concentration, to short-term memory deficits, as well as an inability to recall familiar concepts and speak in a flowing manner depending on the medication I was given. In other words, a problem remembering, speaking and coming up with the correct word or concept at the right time. Altogether aggravating.

In addition to the medication, I also put some of the blame on the stress created after being diagnosed with the illness. I feel that stress made the problem worse; expecting to forget, but trying to remember.

Another difficulty is not being able to concentrate fully. Growing older we might notice some of this, but with chemically-induced concentration failure it sort of comes on quickly. It bothered me greatly.

My old-fashioned solution: write everything down. I use pen and paper or a notebook, but others may wish to use modern gadgets to keep track of what their brain used to do. I have found it necessary to keep records of everything I have done or want to do, in the event I need to assist my wonky memory, which is most of the time.

A large calendar book with plenty of writing space is helpful to me, but I also need a notebook to fill in the blanks. I keep it handy as it’s my new, artificial memory. Basically, everything and anything I don’t want to forget gets written down.

Some examples of this include to-do lists that I number and date; goals like house repairs, finding a gardener, upcoming events that need my attention or items that I may want to read or research; and everyday tasks such as phone calls, appointments, test results and meetings.

Also, it is important to keep up with paperwork. I keep a dairy of what I send out each day. This includes cards and letters because I do not want to send doubles or entirely forget someone (it's happened).

You get the idea. Doing this exercise has helped me tremendously, or rather I should say it has helped my brain process what I don’t want to forget. It takes time. It takes thought. But it is a whole lot better than trying to recreate what you think you did and can’t recall. Plus, if you use pen and paper, you'll be improving your penmanship too!
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rhondalea

Member
0 Replies
Posted on
July 02, 2016
I'm glad this works for you, but I fear that it sends the wrong message about brain damage subsequent to cancer treatment. Five years out, I continue to struggle. Right now, for some inexplicable reason I cannot pin down, it is worse than it has been since before I had my neurocognitive evaluation two years ago. This is not acceptable to me, and it should not be acceptable to any of us. Chemo isn't the only culprit. Surgery, radiation, targeted therapies, hormonal therapies and the cancer itself all play a part. My own experience is that doctors want to attribute most of the symptoms to depression, but that's just laziness. Cancer treatment-induced brain damage needs to be addressed by a comprehensive, flexible program. Until we stop limping along with notebooks and scraps of paper, we will be in no position to demand the appropriate care.
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WenJeanne

Member
0 Replies
Posted on
July 06, 2016
I have benefited from making lists and keeping everything written down long before I was diagnosed and treated for cancer at 45. Being a compulsive list maker, I do recommend it to anyone that can make it work for them. When my mother-in-law was ill and I was helping to care for her, I made her a med sheet with all her doctors, meds, health history, etc. It really helped me know how to answer all the questions that she could not or worse answered incorrectly. When this worked for her I made one for my husband and myself so all our information would be written down in case of an emergency. That has helped a lot through this experience, not having to constantly answer the same questions over. I just give them the sheet and let them sort it out. I do think that it has helped me get through some of my memory issues with less frustration than some people experience. At the same time I have had a hard time talking to medical professionals about it. It is easy to pass it off as getting older (that is my husbands line). I feel like they would not take it too seriously. That is something I know I have to get over and talk about. I guess I am vowing now to get over it. I was in a group called cancer transitions in my home town of Olympia; it was such a great program. We did talk about this issue. And I think it should be addressed more by treatment professionals. Rhondalea is right. Maybe a start will be to get it addressed in the Survivor Care Documents that I believe are now a requirement. Get it in writing and use it to talk to your care team. If they hear constantly from all their patients, then they will start to address it. I am glad we are having this conversation. Let's keep it going!
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SJH

Member
0 Replies
Posted on
July 18, 2016
There is stress with cancer, and the treatments are tough to take. Along with the surgery, anesthesia etc. it's a lot to go through. I've had (4) different types of chemotherapy and I know it's impacted my brain - it's most likely rustled through every cell in my body. It's kept me alive. When I have trouble remembering: Making notes is one way to help. Keeping lists is another. Joining a support group & sharing info with others who have gone through it, talking to a therapist is also beneficial; just to know I'm not alone in this. And, I'm getting older. I'm pretty sure that's had an impact too. Stephanie Hammonds
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Kathy in Florida

Member
0 Replies
Posted on
July 27, 2016
Rhondalea, I'd like to copy your response and hand it to every doctor I visit. I couldn't agree more with you. I do make lists, and I've moved to a paper calendar system. But that doesn't help me when I'm in the car and I can't remember where I'm going, how to get there, or which way to turn. It doesn't help me when I can't get the correct words out of my mouth during a class. Of course, it doesn't help me when I forget the lists! I'm one of the "lucky" ones whose oncologist told me about chemobrain before chemo. I have friends with the same problem, so I was aware, but didn't think it would happen to me. I'm four years out, and it certainly hasn't improved. Will it improve when I'm finished with letrozole? Who knows? I just know I'm very frustrated with the system that continues to put toxins in my veins and mouth to fight cancer, but has so little understanding of the long term impacts. Please don't misunderstand...I'm glad I could be treated and am still alive...it is just the lack of understanding of long term impacts that is so maddening.
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