GBM patients and their partners

Personal stories from survivors
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GBM patients and their partners

Post by Hawk » Tue May 25, 2010 8:12 pm

Often here you read about how someone who has been diagnosed with GBM feels, thinks and reacts when they at first find out their diagnosis. To be told that you have this grade of tumour and knowing the prognosis is like being thrown against a brick wall by a battering ram.

But sometimes we forget that we have wifes, husbands, brothers sisters etc in our family. How do you tell them, and how will they cope with the diagnosis.

I'm the husband of a very lovely lady who was diagnosed with GBM in December 2008, had her first operation in January 2009, and after radiation and chemo was clear until late last month. Last monday she underwent her second operation.

My reason for writing this post is that often both the medical and support professions tend to "forget us", the patients are offered lots of support, which they really need, but who supports the supporters?

I'm not complaining, but I hope that by writing this, I can encourage others to come forward and help to provide support for the carers as well as the patients, at times we need help too, able to share with someone that understands what we are going through as well.

Hopefully this post will be read not only by people directly effected, but also by heath profesionals, and maybe it will encourage them to look at this from a different perspective as well.

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Post by kenobewan » Tue May 25, 2010 9:36 pm

Telling friends and family of my diagnosis was one of the hardest things I have ever had to do. At that stage we thought it was a GBM. We found that you couldn't just tell people straight out or they went into shock.

As far as hoping that medical people might read your post and be changed, unfortunately that's unlikely to happen. I guess that they become somewhat hardened and feel the need to keep a professional distance. However, for the underlying reason you need to look at science itself.

Science and cancer have a love/ hate relationship. Medical scientists would love to create one pill or treatment that cures cancer. Unfortunately, cancer is not amenable to this approach and science finds it difficult to treat the multifacited nature of cancer. Medicine is best at treating acute phases of any illness.

I encourage you share your feelings with those around you. It is good that you have posted here. My wife believes it is important that both the patient and carer have other people to talk to and confide in. I was so wrapped up in what was happening to me, that rarely did I ask her how she was feeling. It important to have others to share this with, to know that its ok what you are feeling.

I hope that these comments are helpful :).
Last edited by kenobewan on Wed May 26, 2010 9:07 am, edited 1 time in total.

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Post by NLeslie » Wed May 26, 2010 4:34 am

Mark I am so sorry that you are going through what you have been. I too am a caregiver to my spouse whom was diagnosed with Grade II Oligodendroglioma in Sept. 2005. It was so overwhelming at the time and his was low-grade. i can only imagine how even more overwhelmed i would have been if it was a higher grade or different celltype tumor. Those two years were nightmares for me. the past 2 1/2 years have been relatively normal to pre-tumor days... BUT nothing will ever be the same as before.
I have had times where i spoke what i thought was positive comments and they were taken by my husband as shallow and hello your not the one with the tumor. Battling the mood swings and taking on the full responsibilities for him and our children (2) step-daughters and our son together whom was 5 years old at the time. I took on the medical research as well as staying on top of insurance requirements, appeals, denials, more appeals, the switching of doctors, second opinion's..etc. the amount of work it takes to stay ontop of everything as a caregiver is unbelievable.
Most brain tumor organizations have a support team or counselor volunteers within their programs. The first time my husband and i visited the founder of the Oklahoma Brain Tumor Foundation in Oklahoma she blew me away. We sat down and she asked him about his diagnosis and then she turned to me and asked me directly. "How about you?" and i said, 'Oh I do not have a tumor.' and she said. 'Yes you do it's just inside your husband. Who is taking care of you?' i started balling for the first time that day... i had held it together for three months through the diagnosis, seizures, battles with insurance, two surgeries and the first rounds of chemotherapy.... my husband looked at me in shock... i was a basket case...
After that i met regularly with a volunteer support counselor over lunch just to stay sane. I also to this day meet with a counselor in our church to help remind me to take care of others i have to take care of myself too. And saying Yes to someone trying to help is okay. They too feel the need to do something to help and allowing them helps all parties involved.
Check into a local Brain tumor foundation close to you and ask them if they have a caretaker support group near you. Or check with your local church if you attend. They may not know specifically the brain tumor caretakers life but they know how to help cope with stress, anxiety and things out of our control.
my prayers and thoughts go out to you and your wife. Enjoy and treasure each great day!

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Post by Tiff » Wed Nov 23, 2011 1:26 pm

Hi Mark
My husband was diagnosed in Aug 2005 at 34yrs, we had only known each other for a year, and he was from the UK and had no family support here in Sydney.
If i hadnt taken him to the hospital that day - he would not have been alive when I got home from work! Horrible thought!
After surgery Craig was released from the hospital - i was told that he'd be alive for 6 month, 2 years if he was incredibly lucky. They sent me home with Craig and nothing but a 'good luck'. I look back on it now and think how terrible that was. But at the time i just did what i had to do and somehow we got through it..and 6 years later he is doing fabulously - you'd never even know he'd been ill. New friends just gape at us when we share our story - they just cant believe it.
But gosh it was a tough time! I dont know that anyone ever fully understands what the 'carer' goes through in a situation like that.
I hope your doing okay...feel free to contact me if you like.

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