Hello. My wife was diagnosed with Oligodendroglioma. I was her primary caregiver for the 14 years she fought her disease. I have one suggestion, based on our personal experiences. While there is much talk about 'patient centered care', we found few in the medical community who actually practiced this type of care. Brain cancer and its effects are highly individualized, therefore your care needs to be highly individualized as well. I am not shilling for Mayo, but I will say, other than when my wife was in home hospice care, the ONLY true patient centered care she received was from her neuro-oncologist at Mayo. We could not have made it through our journey without him and his team. Best of luck on your follow up at Duke.
I was diagnosed on February 20th 2013 with stage 2 Oligodendroglioma.and have had 2 awake brain surgeries. The 2nd one has left me partially handicapped on my right side. Needless to say it is a life changing experience to say the least.
I was diagnosed on February 20th 2013 with stage 2 Oligodendroglioma.and have had 2 awake brain surgeries. The 2nd one has left me partially handicapped on my right side. Needless to say it is a life changing experience to say the least.
Good morning @user_chea8a92a I hope you have a pleasant day today!
In response to your question I can only say that each individual's journey with brain cancer is unique and their own. How one person manages this strange and dastardly disease can be quite different from another. It is important to remember the disease also effects each patient in different ways. No reaction or action is right or wrong, it is just what a specific person experiences.
In my wife's case the location of her tumor caused significant personality alterations so I often say while I was married to my wife for 41 years I was actually married to two different women. The pre-tumor woman and the post-tumor woman. I truly wish I could say it got easier for her, but she was such a changed person after the surgery it was simply too different for me to be able to say..
On the positive side she never wavered in her dedication to doing her best each and every day! She really fought to keep as positive an outlook as she could and to do whatever she could each day, even as her limits adjusted over time. Accepting and adjusting to new limits as they were thrust upon her were times of increased anxiety for sure, but then she soldiered on within her new paradigm of her physical/emotional/psychological condition. She'd find her new groove and we'd move along in it!
She was the truest embodiment of strength I have ever witnessed!
Hello. My wife was diagnosed with Oligodendroglioma. I was her primary caregiver for the 14 years she fought her disease. I have one suggestion, based on our personal experiences. While there is much talk about 'patient centered care', we found few in the medical community who actually practiced this type of care. Brain cancer and its effects are highly individualized, therefore your care needs to be highly individualized as well. I am not shilling for Mayo, but I will say, other than when my wife was in home hospice care, the ONLY true patient centered care she received was from her neuro-oncologist at Mayo. We could not have made it through our journey without him and his team. Best of luck on your follow up at Duke.
You're very welcome! I do not have this, but I'm one of the moderators for Connect, and I'm glad to see that you've connected with Scott.
While we wait for others to join in, you may also be interested in going through these past discussion; feel free to tag members, and share your insights:
I have II....... 5 years now ....tumor is growing and I have symptoms but they are not severe..... it was in parietal.....however they could not get the the whole thing......... I would like to hear from someone
Hello and welcome to Mayo Connect @lovesheep123 I noticed this looks like your first post here. I am Scott and while I have not had this type of tumor my wife did. It was discovered in her frontal cortex.
It sounds as if you had surgery on your tumor and it was not all able to be removed. This was also the case with my wife.
There are lots of folks here who I am sure can also add their situation and diagnosis.
My aunt had tumor removed and then the chemo and radiation, its been 9 most since her surgery and she is having paranoid delusions and is afraid to sleep at night in her home. What can we do for her, please anyone dealt with anything like this?
My aunt had tumor removed and then the chemo and radiation, its been 9 most since her surgery and she is having paranoid delusions and is afraid to sleep at night in her home. What can we do for her, please anyone dealt with anything like this?
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Hi thank you the article was very informative! Do you have this same tumor?
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1 ReactionSorry to hear this! Had it gotten easier?
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1 ReactionGood morning @user_chea8a92a I hope you have a pleasant day today!
In response to your question I can only say that each individual's journey with brain cancer is unique and their own. How one person manages this strange and dastardly disease can be quite different from another. It is important to remember the disease also effects each patient in different ways. No reaction or action is right or wrong, it is just what a specific person experiences.
In my wife's case the location of her tumor caused significant personality alterations so I often say while I was married to my wife for 41 years I was actually married to two different women. The pre-tumor woman and the post-tumor woman. I truly wish I could say it got easier for her, but she was such a changed person after the surgery it was simply too different for me to be able to say..
On the positive side she never wavered in her dedication to doing her best each and every day! She really fought to keep as positive an outlook as she could and to do whatever she could each day, even as her limits adjusted over time. Accepting and adjusting to new limits as they were thrust upon her were times of increased anxiety for sure, but then she soldiered on within her new paradigm of her physical/emotional/psychological condition. She'd find her new groove and we'd move along in it!
She was the truest embodiment of strength I have ever witnessed!
Peace & Strength!
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1 ReactionHi @user_chea8a92a,
You're very welcome! I do not have this, but I'm one of the moderators for Connect, and I'm glad to see that you've connected with Scott.
While we wait for others to join in, you may also be interested in going through these past discussion; feel free to tag members, and share your insights:
Glioma tumor: http://mayocl.in/2tfCvHw
Interactive Webinar: Treatment of Pediatric Brain Tumors:Low Grade Gliomas http://mayocl.in/2ueUSwu
Interested in talking to anyone with this type of tumor!
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1 ReactionHi @user_chea8a92a
I've been thinking about you and wondering how you are doing?
I have II....... 5 years now ....tumor is growing and I have symptoms but they are not severe..... it was in parietal.....however they could not get the the whole thing......... I would like to hear from someone
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Like -
Helpful -
Hug
1 ReactionHello and welcome to Mayo Connect @lovesheep123 I noticed this looks like your first post here. I am Scott and while I have not had this type of tumor my wife did. It was discovered in her frontal cortex.
It sounds as if you had surgery on your tumor and it was not all able to be removed. This was also the case with my wife.
There are lots of folks here who I am sure can also add their situation and diagnosis.
What questions do you have?
My aunt had tumor removed and then the chemo and radiation, its been 9 most since her surgery and she is having paranoid delusions and is afraid to sleep at night in her home. What can we do for her, please anyone dealt with anything like this?
I have this same type of tumor! I would definitely call her doctor.
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