Glioblastoma grade 4

HI Magpie26

so sorry to hear about your mum.  

I supported my late husband G through the 3 years of his GBM journey and for the last 3 months or so he was quite agitated. Our local palliative team prescribed a low dose of Lorazepam once a day and that was enough to just take the edge off it.

These tumours are evil and they do steal the person from you in stages. It's so hard to watch. I can totally empathise with what you say. By the last few weeks of G's journey I was living with a very broken stranger who bore little resemblance to the man I'd been married to for 28 years.

Hold onto the good memories. As you say, just now its the tumour talking, not your mum.

Please remember that this is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold you hand and to offer a virtual hug when its needed. You're not alone. We'vw got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now I'm sending you a huge virtual hug and lots of strength and patience.

love n hugs

Wee Me xx

Thank you so much, I've been reading your stories, I'm so sorry for your loss, it's a horrendous disease. 

My mams battled with breast cancer twice the last one April 2022, she went through tough chemo and radiation. Then she was in remission. 

November last year she was having seizures I thought she was having a stroke as it was effecting her right side, 

December has surgery unfortunately she thought she could get out her bed in hospital and fell popped her hip out twice had surgery to put that back in she has a brace on her leg to support. With this tumor she think she can get out of bed, today and yesterday she was just awful to me, unfortunately it took its toll on me today I just broke down, besides all of this ik trying to sort everything with her house try and plan a funeral. 

I'm going to speak to palliative care on Monday at the hospital she needs to be assessed. 

I spoke to the nurse in the home she says she's ok. She's not ok, I know im her daughter. 

Hopefully we can get someone out to assess her and get her some medication to calm her down. 

Fingers crossed we get somewhere

Thanks again I really appreciate it 

Xxxx

Hey. First of all huge hugs. I know what you are going through. Out of the blue my dad was diagnosed with stage 4 glioblastoma and like your mum no treatment appropriate. We got him home 3 Jan and we have lucky enough to have had 3 lovely weeks with him making memories and telling him what a great dad he is. Several days ago things took a turn he went very insular and down for a few days then took to his bed sleeping and not eating. He can no longer stand to go to the toilet and that is literally driving him crazy. My mum was up with him all night last night trying to keep him in bed. My sister and I are sitting with him to give her a rest. It’s a horrible disease that is robbing me of my lovely dad. Love and strength to get through x 

Hi, huge hugs to you all, it's a horrible disease. My mam getting much worse think she has terminal agitation, I got so much abuse yesterday. We are getting palliative care in tomorrow to see if we can get her in hospice. I don't think she has long left, no one tells you anything I've had to do everything on my own, at the same time im sorting her house out, she definitely needs some medication. She fell out of bed last night, she was waiting over an hour for someone to come, it's not on one bit, people with these cancers should be priority. 

I'm hoping for a good meeting tomorrow. 

Sending hugs to you all 

Oh I know the communication is terrible. The good news is that dad is back today they diagnosed a UTI and put him on antibiotics and he seems back to himself today. Last night in the small hours I was convinced it was the beginning of the end but maybe not. I’ve just had a lovely few hours with him. It’s so awful when they turn nasty but just try and remember it’s the tumour not them. Hope your meeting goes well. Just remember you know your mum and you are her advocate so push hard for the help you need. It’s a roller coaster that no one can prepare you for. Always here to listen if you need to rant xx 

Ah pleased you had a good few hours with your dad, it's extremely draining tho, I don't know about you. I wake up every morning with dread and fear, like you say rollercoaster of emotions. Least he has some antibiotics. 

The stories my mam is telling me are unreal think hallucinations are starting, when I seen her earlier she was asleep I thought she god is this it! Is this the start she has never been asleep when I've been there. 

Making the most of what we have left, thankfully I don't take the anger personally. It's not her but it is scary at times.

Thanks a lot means a lot we are all in this together xxx

How did it go? We have had a pants day we can’t get any overnight care at all. Dad is still wanting to get out to pee. I’ve had to call in favours and juggling work to stay overnight tomorrow and Thursday night. I’m exhausted after 6 weeks of not sleeping. Home hospice isn’t working and I don’t know how to cope x how do they think this works x 

Ah no way I'm so sorry your going through this, maybe get in touch with a palliative care nurse, see if they can him in a hospice think they consider more when they are at home that in a home like my mam, push to get it. 

It went really good they are upping her steroids hopefully that'll take pressure off the brain. She spoke to me first I ask questions I had wrote down. Then she spoke to nurse in home, then went in and spoke to my mam, she broke down and says I don't want to leave my daughter. There's me sitting in the back trying to hold my tears in. There's an emergency plan in place etc... if I have any concerns I just ring her, 

Definitely try and get your dad in a hospice it'll take the edge off for yous. 

My mam pulled her catheter out today. She's very confused and each day you can see she's declining. Poor soul. This disease is so flipping cruel. 

Xxxx

It is so cruel I hate it.  We have had another day of calls and battles to try and convince the hospice team we simply can't cope, Dad wanted to die at home and we are trying so hard to abide by his wishes but without overnight support we just won't make it. I am annoyed as I should be free to support my parents and my sister and all I am doing is spending the day on the phone.  I am glad your mum is getting some more steroids, regarding the terminal agitation from what I have read the nurses can give her something to help with that side of things.  Every day is exhausting, I've done a full days work and shortly off to drop my dog at a friends so I can take over from mum for the night then do it all again tomorrow! x

It's simply not fair at all, this type of cancer should be priority for getting them in a hospice. Keep pushing I know it's hard and exhausting you got to fight for it. 

I really hope it's goes ok tonight for you

I'm washing my mam's hair tomorrow..that should be fun hopefully no anger issues towards me  take one day at a time cherish every day, I want her to leave this life with no regrets. 

I want to feel that I did everything I could for her. 

Xxxx