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Living With Cutaneous Lymphoma
“Telling family and friends that you have cancer is worse than having cancer,”
says one patient. “ You see their face and know you just ruined their week. They
look at you differently, and it also makes them think ‘Hey, if he got it, and he’s
always been healthy and active, it could happen to me.’ It makes people consider
their own mortality.”
To make matters more complicated, cutaneous lymphoma is not like other
cancers. It is a chronic, live-a-long-time-with-it disease and most people
understand cancer to be dire and often deadly.
Friends may look at you and say, “Wow, you look great – you must be doing
fine!” When, in reality, you may feel awful. Or, it could be a good day, after
a sequence of bad days. Many cutaneous lymphoma patients look fine but
feel terrible. Patients can become tired of explaining again and again about
their disease.
Telling family can be an even tougher task because, again, with their
common knowledge of cancer, they are likely to be fearful hearing this
diagnosis. Everyone responds differently and some people may become
distant or go into denial. Expect to do a fair amount of educating
the people around you so they can become sensitive to what you are
going through. Encourage them to contact an organization like the
Cutaneous Lymphoma Foundation (
) to obtain
their own information or speak with someone who can help them gain an
understanding of what you are going through.
After people accept the reality of your diagnosis, you may find it challenging
to explain symptoms like itch. Itching can be mind-boggling and
unexplainable to others, especially the chronic component of it. Many
patients claim that dealing with a symptom like relentless itching can be
frustrating and even a mental struggle – something that you cannot explain
to others.
Chapter 13
How to Tell Family and Friends
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