My sister is only 42 and has been diagnosed with this cruel and unfair brain cancer. It was removed and treated about five years ago, when it was called Anaplastic Astrocytoma. They told us it would be back at some point, and at that point there would be nothing further they could do. Fast forwarding to about a month ago, my other sisters and I were under the impression she had kept up with her scans and that they came back fine, because that’s what she was telling us. She was independent and we are all enough of a distance apart from each other that we didn’t see her more than every couple of months or so. Then suddenly she was evicted from her apartment and had nowhere to go. I became frustrated with her because she wasn’t looking for another one, and then I found out her finances were in a horrible spot too. Account was overdrawn, phone was shut off due to nonpayment, she was driving around on a donut tire, etc. My sister has never made the best financial choices but this was out of control. Something else was off. I asked her over and over again if she was okay and if she was going through something alone. She continued to insist she was fine, and even promised she was. I listened to her and assumed she was making bad choices, scolded her and gave her a budget to follow. Christmas rolled around and she told us she was in the hospital because she had a seizure. I was beside myself and went to see her in the hospital. She has had seizures before and was supposed to be on Keppra (sp?), and she said it happened because she forgot to take it. I didn’t fully believe her, but had no choice but to carry on. Then one day we went out to dinner with my grandparents. She suddenly looked gray and confused, and started vomiting. It was horrifying. She seemed to have no sense of urgency about it. She vomited on herself, on her plate, and in her glass. Then she continued trying to eat her dinner. She couldn’t sit right in her chair and she was slurring her words. She wouldn’t go to the hospital. She couldn’t walk fully upright. Nobody knew what to do and that was like a nightmare in itself. She wanted to sleep it off, so we let her. The next day I asked her to stay with me. She stayed with me for the next two days and I was able to observe her more. She swayed back and forth like she was drunk when she stood. She stared a lot. She drifted off and couldn’t complete her sentences when she talked. She was like a zombie. My sister has always been loud and chatty, and full of laughter. The next day I finally called her cancer doctor and found out I was on her release form from a few years back, so they were able to talk to me. They told me her scans from a year ago showed the cancer had returned as glioblastoma. I was so overcome with grief and guilt at that moment. Her aggressive cancer has been doing what it does for a year without treatment, and I thought she was making poor life choices. She was living with this alone, and I have no idea why she didn’t tell anyone. They told me to take her to a hospital, so I did. Nothing left to do but palliative care. Now she has maybe 2 months to live, and I have no idea how to forgive myself for how angry I was with her, or how to process this. A month ago, we were all just living our day to day lives. Since then, I became a power of attorney and signed a DNR form. Today, I put my 42 year old sister in a Hospice facility. It all just seems to be happening too fast. I always thought I would have more time to work through it when it came back. Until now, we all wanted to believe this miracle had happened and our sister was beating the odds. She was making poor choices but she was fine. Anything was better than this. I don’t even know what I’m looking for by coming to this group. Right now I’m just confused and angry, and I don’t know what to do with it all. Thanks for anyone who made it to the end of this long post. I’m so sorry you’ve all been touched by this diagnosis in some way.
Hi , welcome to the community, tho I'm sorry you've found yourself here after the news about your sister. You might also find it useful to join the Family and friends group to get support for yourself.
I'm one of the volunteer community champions & tho I've not had direct experience of a primary brain tumour, I have had a secondary n had it treated with cyberknife 6 years ago.
Please don't feel guilty. How on earth could you know her cancer was back if she kept it from you? Should you need to talk to someone, the help line's open 8am to 8pm on 0808 808 0000. Or have a look at "in your area" to see if there's a Macmillan or Maggie's centre near you, where you can talk face to face.
There's bound to be someone here who will know more about glioblastoma than I do - not difficult, as my primary was kidney cancer - but by my answering I've " bumped" your post up to the top so it will get see more easily.
Sue
Hi and a second welcome to the online community
I see that you've had an excellent reply from buttercup01 who has suggested another group for you to join and also some resources to help you.
As this community can be a little tricky to navigate when you're new I thought I'd provide you with the links to take you straight to the group and information that Sue mentioned.
Clicking on the green underlined writing will take you to the family and friends group, which is a safe and supportive place to share your worries, the in your area resource and more information on what the Macmillan Support Line can offer you.
Sending a supportive ((hug))
Thanks latchbrook
I really must learn how to do those links.
I’m new in this group. My name is Livia, my wife we’re diagnosed in October, had surgery and just finished the 6 weeks radiotherapy + chemo. Our lives changed so much.
Hi. My name is Nuala. My husband was diagnosed in early December. We, like you , are just finishing radio & chemo. Finding that I'm just scared all the times and extremely sad
Hi Life Detour n , at least you have both joined the community n this group. Welcome both!
I'm one of the volunteer community champions. I've not had experience of this type of tumour myself but of a secondary brain tumour, following kidney cancer.
I'm sure you will soon hear from ppl in this group. Everyone here is v friendly n approachable n willing to share their experience n knowledge - that's one of the things I find invaluable- we each learn from others on the site,rather than googling n ending up with out of date info.
Livia you might want to add a bit to your profile so folk know where you're coming from n to save u having to repeat yourself
Life Detour you may find it useful to join the Family and friends group, to get support for yourself.
Hi, this is a great group for support, 2 years ago just reading other people's stories, good and bad, was a great help to me and I spent many hours on this discussion group. We try to enjoy the here and now and not let the worry about the future rob us of that joy. Each person's story is different and oncologist quote statistics and not always the small print that go with it. If you look my profile you will be able to read about my son's journey.
God bless
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