Brain cancer

hi, my name is John. My wife was diagnosed with glioblastoma 16 months ago. She had surgery in 2016,the Dr got 65%of the tumor. She’s gone through chemo & radiation. She also went on the ketogenic diet when she was first diagnosed. The tumor was pretty much gone after that. Then in May of 2017 she had a facial seizure. She went back in the hospital and had another mri. It showed the tumor was back. So her oncologist started avastin without temodor because her blood counts are to low to handle the chemo. In December she had another seizure. Right after that one we were able to get her the novocure Optune. She’s had it a month now but I feel she’s started to slip away. I’m her husband and caregiver. I’m with her 24/7. All she cares about is sleeping. Her appetite is diminishing and she doesn’t want to drink much. Her voice is a whisper. We have started homecare for her because she’s so weak. Also she has a major deficit on her left side from the original tumor.weve been married for 41 years. It’s really hard to watch her slipping. 

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    Hi John,

    A very warm welcome to Cancer Chat.

    I am so sorry to hear that your wife is deteriorating before your eyes. I lost my mum to secondary breast cancer after a 12 year struggle. In the end, she had metastases in her brain, bones, liver and lungs and it was absolutely heart-breaking to watch her health fail so suddenly. That was 20 years ago and she didn’t have access to all the treatment that your wife has had. By the sound of things, your wife has had a rough ride for the past couple of years, which probably means that you have had one too.

    I am glad to hear that you are still managing to keep her at home, and it is good to hear that you have been able to arrange homecare for her and, I hope that this is working out well for you both. It is heart rendering to look after a loved one on your own 24/7, but I can understand that you want to keep her at home to the end, especially after being married for 41 years.

    I have a similar problem with my in-laws who are 94 and 97. They have been married for 78 years. Sadly my mother-in-law has dementia and is very frail, but my 97 year old father-in-law is determined to keep her at home. I can see the toll that this is taking on his health and this worries me. I hope that you are managing to look after yourself, despite being kept so busy?

    This is not an easy part of the cancer journey – not that any part is all that easy, but it is frustrating to be able to do so little to halt the progress of this horrible disease.. Do you have family or friends who can support you? Please remember that we are always here for you whenever you want to talk and please keep in touch to let us know how you are both getting on.

    Kind regards,

    Jolamine xx