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Living with a Brain Tumor:
How Might My Tumor or Treatments Affect Me?
Your physician is the best source of information on how your treatment
will most likely affect you, but he or she may not be able to predict
exactly what you will experience. There is much variability from patient
to patient. A number of brain tumor patients experience some changes after
treatment. These changes are mentioned below so if you do experience them,
you will know how other patients have managed.
Problems affecting
mobility
Some individuals have symptoms caused by their brain tumor that remain
following their surgery while others may develop temporary symptoms immediately
following their surgery. Some persons develop new symptoms that may be
associated with tumor growth or edema (swelling) in the area surrounding
the tumor. These symptoms, depending upon which area of the brain is affected,
may include weakness or paralysis in an extremity, the face, or on one
side of the body; numbness or lack of sensation in an extremity, the face,
or on one side of the body; a loss of awareness of where an arm or leg
is located in space; problems with speaking or understanding speech; or
problems with memory.
Fatigue
Many patients feel fatigued after their surgery and sometimes during
radiation treatment or chemotherapy. Patients may continue to experience
some loss of energy, even years afterwards. People who experience these
side effects find they just need to slow down, do less. They may even
need to change their schedule to include a nap during the day. Patients
find a short nap (30 minutes or less) is best, longer naps can interfere
with sleep at night. Other patients only experience fatigue while they
are receiving chemotherapy or radiation and find this side effect gradually
disappears after treatment is finished. In managing fatigue, patients
often find that light exercise (short walks, non taxing workouts) may
give them more energy than being completely inactive.
Cognitive deficits
Cognitive deficits, changes in your thinking processes, can be very frustrating
for patients who have brain injury caused by their tumor or the necessary
surgery. Some patients notice problems with short term memory, "I find I
can't remember names or where I parked the car, it's very disconcerting."
Some patients experience problems with memory related to concentration, "by
the time I read to the bottom of the page, I can't remember the content of
what I read at the top." Some patients find it is more difficult to organize
tasks, "I can't seem to manage to get my shopping list together"; "I'm getting
stuck making simple decisions about what socks to wear"; "I used to be able
to manage 10 things at once I can no longer do that." Related to this is the
experience some patients have that they can no longer manage many
stimuli at one time. If too many people are talking at once, for example,
they feel overloaded and confused. This is quite an unpleasant experience.
Some patients who have noticed the above changes have found significant
improvement over time as they recover from surgery or other treatments. For
other patients, these changes develop into chronic conditions that they must
live with. Patients have found creative ways to adapt. Some patients find
they can no longer rely on their memory and must develop the habit of writing
everything down. Carrying a calendar and notebook with "to do" lists for the
day are aids many have found useful in keeping themselves on track. It is
helpful for patients to let family members and employers know what problems
they are experiencing so that they may cooperate and aid in managing these
difficult situations.
Another related problem that some patients experience is difficulty with word
finding. Patients struggle to come up with the word they want to say, even
when it is a word they know well. This can also be quite frustrating. Some
patients have found that working on vocabulary has speeded their recovery
in this area. They've found it helps to drill with vocabulary words. Some
have found it useful and fun to do simple crossword puzzles or word-finding
games.
Another difficulty that patients may experience is noticing a lack of
motivation. This may be due to difficulty organizing a task, or can be a
sign of depression. Patients may also notice that they feel more emotional
than usual, and their emotions are harder to control. They are more likely to
lose their temper or cry more easily than before their diagnosis and treatment.
If you experience any of these changes it is important to discuss them with
your physician or nurse.
All of these difficulties listed above can be very stressful for the patients who
experience them and for their partners, spouses, other family members and
friends. It is important to know that these problems can occur, but if they
do, they often improve with time. It is also important to know that problems
with memory, concentrating, organizing, and word-finding are often made worse
by stress. What seems to be most important is that patients and their families
learn to identify and describe what has changed for the patient, so they can
work with these changes effectively, and avoid frustration. Help is available
for patients who experience these problems through the Brain Tumor Support
Group and through the Brain Injury Program in the Rehabilitation Department.
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