NBTS Headquarters Blog
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Posted by: steven5 on April 18, 2011 5:50PM UEDT
It still amazes me. After explaining, the long term implications of a brain tumor so many people really don't get it. The comparison to a broken leg, falling off your bicycle, and getting over your brain tumor kick have become commonplaces. Easy comparisons show a lack of fundamental understanding about brain tumors.
People in my life hae gotten away from the: " O my God you had a brain tumor stage.", but anything more remains beyond some people's comfort zone. Public speaking about brain tumors gets a cold shoulder. People are more comfortable about a heart attack, breast cancer, arthritis, and migraines than they are talking about brain tumors. Part of raising awareness means bridging this lack of understanding. Sometimes it takes a poem, or maybe we need public service ads for brain tumors. Steven |
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Posted by: Patient Services Team on April 19, 2011 10:48AM UEDT
@steven5,
Thanks for sharing with the community. You bring up some good points which we hear a lot from others about. Based on your comments, would you say that one of the great challenges that you've noticed is being able to explain your brain tumor experience to friends, family, and strangers? What has helped you bridge the lack of understanding that you mention. |
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Posted by: firefist on April 19, 2011 6:13PM UEDT
One of the issues I run into a lot is that once you mention "brain tumor", people almost automatically assume "cancer". And not to take away from those that are facing the fight against cancer, to say that one has a brain tumor is not to say that one has cancer (well, according to my "educated" daughter, the tumor itself IS cancerous, just not necessarily malignant...{sigh}). I had one macroadenoma removed 6.5 yrs ago, and have since developed a second that has hemorrhaged. Whereas these tumors may not be malignant, they still cause extreme discomfort (consistent, non-stop headache pain for over a year at one point), crushing of the optic nerves, mis-function of other pituitary/glandular/hormonal activity, dizzy spells, etc. I lead a rather "normal" life, considering, and most people are rather shocked when they find out for the first time that I walk around with a large, gum-ball-sized mass behind the bridge of my nose, and that it's been there for over 2.5 years - the doctors are hesitant to do surgery because the tumor has encased the internal carotid artery. I go to work, I take care of my kids, I am active with my church - I resemble a typical 40-year-old woman. People need to understand that there are SO MANY different types of tumors that manifest in the brain. All of them require special attention, because the brain is such a delicate area and so important to the function of human life! To say "tumor" - in any part of the body - does not immediately mean malignancy; however, it DOES mean the need for specialized care. I'm excited that I am a survivor, and that I can share my story with others, and encourage them!
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Posted by: steven5 on April 19, 2011 6:32PM UEDT
My poetry has helped me bridge the lack of understanding. People openly relate to the poetry, and on less negatively charged ground. It has opened some doors to share things people are less comfortable with.
I have become more aware of the limits of the discussion--when to push it and when to ease up. My wide range of reading is also an advantage. In my comments and replies, some medical people may have noticed the influence of Jung and Adler. One of my greatest challenges is that the tumor placement challenged my core strengths. Multitasking was a core strength; the variety of interests was a core strength. Social skills was not a core strength, and the tumor forced me in that direction. Humor bridged the lack of understanding. People relate to the metaphor. |
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Posted by: Vanya on April 19, 2011 7:45PM UEDT
Steven5: I am so glad I found this site today. Your first comment about "The comparison to a broken leg" was so needed for me today. This morning I was told by my therapist that my tumor was "like a broken arm" that I should "accept that I have it, heal from my surgery and move on" I was so stunned that I couldn't even respond. Then I started to think that maybe it was me and that her comment was ok. I was so glad to read your post above, it validated my feelings. Thanks.
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Posted by: Jackie2 on April 19, 2011 10:53PM UEDT
The year immediately following my 23-hour craniotomy was very much a blur... I tried very hard to 'lock' things into my 'long-term' memory and my therapists (PT OT ST) and nurses in our one year reunion were surprised how well I had 'preserved' those memories in the hospital.
Being a trauma patient (did not learn that term until 2, 3 years later after I had experienced another trauma - losing my job) I was easily frightened and couldn't take much pressure nor criticism. I did not know that I was slow, nor did I 'remember' that I was forgetful. I tend to go into details about my ordeal - actually was 'over-excited' when talking to people I had just met. Eventually I talked to a counselor and was made aware of the situation and finally got the 'unresolved issues' resolved. To me, survival is an on-going, never-ending effort/achievement that humanbeings have to face everyday. We are all survivors. It's just somewhat more complicated and demands more energy/efforts from us brain tumor fighters. Everything else becomes a non-issue when we are focused on getting well, getting by... In the meantime we can feel crushed by the tiniest frustration we are confronted with everyday... But we keep on going, keep on fighting, and keep on living! This is the spirit of survivorship! |
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Posted by: steven5 on April 20, 2011 9:09AM UEDT
Vanya,
Some things about a bain tumor will heal and get better with time. What makes the comparison to a broken leg unacceptable is you do not need a yearly MRI on a broken leg, you do not have a recurrence of a broken leg, and you do not have to fundamentally alter the way you approach a task. |
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Posted by: Patient Services Team on April 20, 2011 2:00PM UEDT
@firefist: Thanks for sharing your story with us. You are so right about how many tumors there are and the need for special attention...there over 120 different tumor types!
@steven5: Thanks again for sharing your insights with the community. We also enjoy the poetry you've shared with us. @Vanya: Thanks for your comment. We're also glad that you found this site and that the community can be of support! @Jackie2: Thanks for sharing your experience with us and your meaning of survivorship! |
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