Mayo Clinic Connect
Any oligodrenglioma 2 diagnosis?
Hi @robinjenkins70, and welcome to Connect. I’m tagging @audrapopp and @cynaburst, both are very active members in the Brain Tumor group.
Is this a recent diagnosis? What next steps are being considered?
Liked by caretothepeople
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I was operated on at Duke 8/27/12. Dr. Friedman. I continue my MRI’s at Duke. So far there is no progression!! I am always worried as I have suffered from seizures and this C can spread in the brain and spine.
Hi @robinjenkins70, have you tapped into the info and resources from The American Brain Tumor Association? Here is their page about Oligodendroglioma: http://www.abta.org/brain-tumor-information/types-of-tumors/oligodendroglioma.html
Thank you. I’m not sure which sites I have visited. I will definitely go back to this one…. Keep the info coming!!!! Always interested in learning. On my way to Duke today!
Liked by Colleen Young, Connect Director
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.
Welcome to Connect, @IndianaScott. Indeed there is a lot of talk about patient-centered care. Great to hear that your wife got it at Mayo. What was your experience as a caregiver? So often, the attention is focused on the patient and the caregiver is left on the sidelines. Were you cared for as the caregiver?
PS: We would love for you to join this discussion about hospice and palliative care too https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/
Hello @colleenyoung Thank you for the invite to the discussion on hospice and palliative care. I will check it out. Unfortunately I basically existed for 14 years as a caregiver without anyone truly giving a good goddamn. My GP talked a fair game, but then would never follow through for half the time and the other half thought I was just ‘seeking sympathy’ when I explained the life of a fulltime caregiver. If I had a dime for every time someone said ‘remember, take care of yourself’ I’d be a rich man. However, the only reason it was ever said was to placate the person saying it. Care for the caregivers, when they are unpaid, fulltime spouse/family member is a myth. I believe this is especially true with brain cancer patients as many, many folks simply shy away from anyone who is not mentally ‘normal’. Sorry….but you asked…. it was a brutal 14 year journey for my wife and for our children and for me.
Throughout my caregiving for my wife I constantly called to mind the quote by Dr. Martin Luther King. I know he was talking about something totally different, but it works for caregivers too…”We will not remember the words of our enemies, but rather the silence of our friends.”
@IndianaScott thank you for your honesty. I am not sorry I asked as I think this exposes an experience is unfortunately a common one. It is so important to “take care of yourself” when caring for someone else, but I have not yet seen a caregiver be able to do that. It seems to be an all or nothing proposition. How can one give any less?
Did you find that once your wife entered hospice care that some of the care was directed towards you? A friend of mine said that when his wife entered hospice, he was finally able to be her husband more than her caregiver.
To be honest, not really much. It was part of the spiel when we enrolled and there were certain aspects that obviously helped. Having her medications delivered, her MD visit her rather than vice-versa, nursing visits, but until someone comes up with a model that includes some actual medical care provision for full time, unpaid, family member caregivers as part of hospice my opinion is it won’t truly change.
My wife’s journey may have been a unique one. She was very isolated by her disease, as was I. Far too much abandonment during the course of her disease fight, Many old friends forsaking her. Same with family. Too many truly terrible, unethical, abusive, and in one case criminal caregivers to count. Local GPs who were out of their league with her disease, but unable to admit or compensate for that fact. Consequently she relied on my presence and her continued connection with her Mayo doctor to provide her any calm and refuge during her fight.
While not perfected yet, hospice was a godsend and provided her the one thing she wanted, which was to fight her battle in her home and not an institution.
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.
Liked by Scott, Volunteer Mentor, grammydove
Hello @andria111270 I send you strength, courage, and peace in your journey. “Life changing” indeed! You said that well!
My wife was also initially diagnosed with Stage II Oligodendrogioma. Her surgery left her in a coma, then paralyzed. She worked through 16 months of in and out patient PT, OT, and CT to regain a vast majority of those lost abilities. They stayed with her for a very, very long time! Continue to be strong and know there are some out in electronic land thinking and pulling for you!
I applaud you for being here and seeking to share some of your journey. Support, sharing, and understanding are necessary, very useful, and hugely important!
I wish you nothing but the best each day.
Liked by danavetmom2, grammydove
Welcome @andria111270. I see you’ve met Scott. I’d also like to introduce you to @robinjenkins70. So glad you joined us here on Connect.
Can you describe the handicap that you have? Is it your entire left side? Have you been able to regain partial use of your limbs?
Liked by grammydove
Diagnosed 2years ago-inoperable- had chemo no radiation-doing very well! Like to talk to others with the same tumor!
Liked by Scott, Volunteer Mentor
Welcome to Connect, @user_chea8a92a.
You’ll notice that I moved your message to an existing discussion about oligodendroglioma so that you could meet @IndianaScott @andria111270 and @robinjenkins70 who have experience with this type of glioma.
We look forward to getting to know more about you.
Hello! Good to e-meet you here! I am Scott and my wife was diagnosed with an oligodendroglioma and fought it for 14 years. I was her primary caregiver for those years. She had an initial surgery (emergency) and then no chemo or radiation. I would be happy to answer any questions or share her experiences if you would like!
Strength & peace
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