Cancer fog, chemo brain…whatever you want to call it, this is a real animal. It started out a little bit like a joke…”oh, so this is what they were talking about”. That is until it was still here in our house long after the chemo ended and we attempted our return to “normal”. We are not in a unique situation since the vast majority of cancer patients experience some level of cognitive effect and for many, it is a long lasting effect.
For us, it seems to present itself as memory issues. He can remember third grade but can’t exactly recall what I just told him about tomorrow’s schedule. Sometimes, it’s about finding that darn word that is right on the tip of the tongue or about remembering the details. I also tease him about “being on a loop”. He just repeats himself over and over. He asks the same questions over and over. (And then forgets the answer!)
The symptoms that my husband experiences are similar to that of other patients who have experiences cognitive effects post cancer treatment. Other ways that it might express itself could be inability to focus, difficulty concentrating or a general sense of fogginess. Multi-tasking is tough. Many patients find they just require a little more time to think or respond than they did pre-cancer. For some, these effects lead to self-esteem and identity issues that are compounded by the ability to perform at their previous level in their careers and relationships.
There seems to be more attention focused (no pun intended) on these issues lately. Thank goodness. Otherwise, the cancer community might feel completely crazy, isolated or unheard. More recently, major research trials are being done to look at the causes and implications of these cognitive effects on survivors. A recent article in September’s Journal of Cancer Survivorship acknowledges the financial and psychosocial effects of chemobrain on cancer survivors. The good (and bad) news is that there is actually scientific evidence that something is happening in the brains of cancer patients. Brain scans show a change in blood flow, brain activity, and metabolism which might explain some of the symptoms. Researchers are beginning to link increased risk of cognitive decline to particular chemo drugs. They are also realizing some of the factors that may increase the likelihood that a given patient will experience the effects. They are finding possible genetic predisposition may play a part as well as the particular drugs/dose/delivery method used. There may also be increased risk based on younger ages and particular types of cancer. Even “chemobrain” is probably a misnomer since cancer patients who have never received chemotherapy can also experience the fog.
There is a fantastic new book, Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus; written by Dan Silverman, MD, PhD and Idelle Davidson, that I highly recommend for cancer patients, survivors and family members. Dr. Silverman is a physician and scientist who is one of the researchers working on the science behind chemo brain. Ms. Davidson is a award winning jounalist and breast cancer survivor. Together, they have written a very informative but approachable book on the topic. Please visit the website for the book at www.yourbrainafterchemo.com.
If you or someone you love is experiencing symptoms of cancer fog, please discuss it with your physician. You also need to know that some providers have been reported to be less than receptive or knowledgeable about this topic. Remember that the information on this is relatively new and that some oncologists are incredibly focused on curing you (and thank heaven for them) but may not be as focused on the quality of your life post cancer. Make yourself heard. Here is a info sheet from CancerCare with talking points for your conversation.
For spouses, I am still sorting through the best ways for us to be both supportive and patient with our foggy partners. It is frustrating to repeat ourselves over and over again yet we cannot blame the survivor any more than we can blame a person affected by dementia. It is challenging to celebrate survival while experiencing guilt over our occasionally less than admirable responses to their lasting cognitive effects.
I welcome input from anyone who is living this part of the new “normal”…how are you adjusting to these effects? How has it affected your relationship with your spouse? What implications, is any, do you see in terms of parenting?
