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27/11/2016 10:22:49 AM

Chrismat
Chrismat
Posts: 1
Hi, my hubby was diagnosed out of the blue on July 8 in the morning with grade 4 glioblastoma and had brain surgery that evening. Thought he was having a stroke. it was the size of 3 golf balls. I had to call my older son in Ontario with the horrific news and he flew in while his dad was still in surgery. Have a 16 yr old as well. Ron, my husband had a rare reaction during the surgery - as they were cleaning the area with peroxide after the tumour was debulked his brain went completely white and boggy. We were told he may not wake up, he may wake up and be seriously compromised. They didn't know. He was a miracle and woke up with no deficits, but they could not put the bone flap back. To this day, he is without that part of his skull and battles swelling constantly. He then went through six weeks of radiation and chemo pills and did great, although steroids had to be constantly adjusted to combat the swelling. He is now on his second month of temozolomide (takes it 5 days out of 28). We to not know the status of the cancer as the MRI showed so much inflammation. He is getting another Dec 9.

We stay positive all the time. But in the quiet (noise) of my mind, my thoughts race. Then I feel guilt. How do you deal with the uncertainty of this disease? I see the swelling every day. They say that can still be from the surgery, radiation, chemo or new tumour growth. He is doing well on the temozolomide, no nausea just very tired. I have been off work with him since the day it happened (chronic daily migraine, stress/anxiety) but am considering going back in the new year and am terrified to leave him.

Thank you. Any info, similar stories is helpful. I do feel 100% completely alone, and feel responsible for the physical and mental health of my entire family.
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09/07/2017 10:48:51 AM

Kristine
Kristine
Posts: 2
Chrismat wrote:
Hi, my hubby was diagnosed out of the blue on July 8 in the morning with grade 4 glioblastoma and had brain surgery that evening. Thought he was having a stroke. it was the size of 3 golf balls. I had to call my older son in Ontario with the horrific news and he flew in while his dad was still in surgery. Have a 16 yr old as well. Ron, my husband had a rare reaction during the surgery - as they were cleaning the area with peroxide after the tumour was debulked his brain went completely white and boggy. We were told he may not wake up, he may wake up and be seriously compromised. They didn't know. He was a miracle and woke up with no deficits, but they could not put the bone flap back. To this day, he is without that part of his skull and battles swelling constantly. He then went through six weeks of radiation and chemo pills and did great, although steroids had to be constantly adjusted to combat the swelling. He is now on his second month of temozolomide (takes it 5 days out of 28). We to not know the status of the cancer as the MRI showed so much inflammation. He is getting another Dec 9.

We stay positive all the time. But in the quiet (noise) of my mind, my thoughts race. Then I feel guilt. How do you deal with the uncertainty of this disease? I see the swelling every day. They say that can still be from the surgery, radiation, chemo or new tumour growth. He is doing well on the temozolomide, no nausea just very tired. I have been off work with him since the day it happened (chronic daily migraine, stress/anxiety) but am considering going back in the new year and am terrified to leave him.

Thank you. Any info, similar stories is helpful. I do feel 100% completely alone, and feel responsible for the physical and mental health of my entire family.
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09/07/2017 10:57:58 AM

Kristine
Kristine
Posts: 2
Hi Chrismat,
I am new to this forum. My husband was diagnosed October 7, 2016. He has a GBM stage 4, in operable.
How is your husband doing now? It does take a while for the steroids to decrease the swelling. We saw immediate results however we were then dealing with results of "steroid induced psychosis". Once we started reducing the steroid the psychosis slowly went. Is your husband still on steroids?
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