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Please Quit Telling Me It's Not The Cancer
January 22, 2020 – Jane Biehl PhD

Please Quit Telling Me It's Not The Cancer

A cancer survivor talks about the side effects of cancer and chemo few people truly understand.
 
PUBLISHED January 22, 2020
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.

She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
Many people have shared their experiences after a cancer diagnosis and treatment with me. I have several friends on Facebook, who mention a secondary cancer, a new diagnosis, or another medical problem that they feel is related to their cancer, but have been dismissed by both friends and professionals. 

However, I monitor any additional medical problems that I did not have before my cancer diagnosis. If it pops up afterward, there may be a reason. It is time to get online and to talk to my doctor about whether it is related to my cancer or treatment.

Recently, a friend came to my book club bruised from a fall after two stem cell implants. I asked her if anyone had told her chemo, every kind of chemo, can cause balance problems and she said no. No one told me either, and I found out from a trainer at the YMCA. I couldn’t understand why when I leaned over to pick something up I would pitch forward. Physical therapy and personal training can assist with this, but we need to know first. This information should be given to every single cancer patient.

I had become increasingly irritated with people at my dentist's’ office telling me that having one tooth after another crack causing an extraction is due to my hard bite. A hygienist told me airily I had the hardest bite of any patient in the office! 

Yes, I am nervous and grind my teeth, I do have bruxism, but to have 5 teeth removed in one year in 2019 is excessive!  Finally, my oncologist shared with me that one of the chemo’s I was on weakens the bone structure. My dentist, who is wonderful, also researched and told me the same thing years after my diagnosis.

My audiologist originally thought my severe drop in hearing loss was due to Presbycusis or aging. I brought in an earlier audiogram to compare the precipitous drop. I then did some research proving the chemo I was on could because hearing loss. She was shocked and immediately went to work to help me.

I started suffering severe stomach pains and my oncologist referred me to a gastroenterologist. He did an endoscopy, found esophageal ulcers, and put me on medication.  My PCP tried to tell me it was my age since he knew several patients with this problem.  I did not believe him, because I never had problems before. Later the nurse practitioner for the specialist told me that cancer often does cause the ulcers. Again, my research also mentioned any compromised immune system problem such as cancer can lead to this problem that I used to start this conversation.

And, speaking of age, please do not tell me you know how I feel, because you are slowing down from age. Yes— I get that and admit as an elderly person it takes me much longer to complete tasks. We all get more tired as we get older.  However, that is not the same as the type of fatigue cancer survivors have, where we can be fine and suddenly drop and have to take to bed immediately.

Being forgetful is also part of old age and I know that, but that search for words known to every one of us with chemo brain is scary!

Many cancer survivors experience secondary cancers, total joint replacements from the bone density being reduced and countless other problems from the diseases or treatment. Sometimes it is not cancer-related. Joints do wear out. I have severe arthritis and had a rotator cuff surgery long before my cancer hit. The shoulder is worse now, but it is from – gulp – age! Our immune systems are affected by cancer too. We may get more frequent infections and need to watch carefully not to be around people who are sick.

Some people may ask if it really matters whether it is related to cancer or not.  For us it does. My excellent audiologist keeps in touch with my oncologist and we monitor my remaining hearing. It was my oncologist who referred me to the specialist for the esophageal ulcers.  The oncologist is truly unique because they work with so many specialists and family practitioners.

I ask myself why the doctors didn’t tell me these side effects. It would take them all day to go over the possible side effects and scare the heck out of us. There are many side effects we will never have.  However, it is up to us to know our bodies and to be vigilant in monitoring them. Cancer is an insidious and systematic disease and doesn’t affect just one part of our body. However, by having a great relationship with our doctors, doing some basic research to start a dialogue with our doctors, and talking to other survivors, we can help ourselves.

It does not help to become paranoid and think about this all the time. Go read a book, watch a movie, play with your children and grandchildren and enjoy life.  You are doing what you should and are better off for it! 
Continue the conversation on CURE’s forum. >>
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