Hi My heart is breaking. My mum was diagnosed with a Gbm4 in august 2014. She has been so strong and positive throughout but she lost my Nan last October around the same time she found out her tumour was growing again. Mum has gone done rapidly since then, she had a number of falls in December and was in and out of hospital for the next 2 months with water infections.
She has been confined to a hospital bed at home for the last 3 months with 4 times a day carers coming in. 2 months ago she started having seizures again and were told the devastating news mum only has months left to live. It has been such an emotional rollercoaster watching her deteriorating and then trying to fight back. I have been off work with stress for the last 2 months because I work in a call centre and can’t cope with the customers moaning about trivial things. Mum lives 2.5 hours drive away from me so am trying to make the journey to visit at least once a week. This journey is emotional as I worry about what I will see when I get to mums and then I end up crying the whole 2.5 hours home. Mum had a few more nasty seizures 3 weeks ago whilst I was there and the doctor told me she possibly only had days left. She has now been put on a syringe driver to get her meds in and keep her calm, which seems to be working. Mum seems comfortable but now has very little conversation and cry’s a lot which is heartbreaking. She knows she is dying but won’t talk about it with me. She has a partner that lives with her but he I’m has dysphasia in him so has difficulty communicating as well. I contact mums partner each day and call Every couple of days to see how she is. It’s getting harder and harder to see her like she is. She is so frail and tired. Mum and I used to talk 3 or 4 times a day, I miss her, she was the one I used to call if anything happened at work or with the kids.
Im due to go back to work next week but really don’t know what to do for the best. I want to be there for mum if anything happens and also worry I won’t cope as the littlest things set me off in tears. I feel so guilty being off work and not being able to do anything for my mum but I also have 2 kids and 2 dogs to look after. I feel so tired and just want to sleep all the time. Yhe kids have gone back to school today which has made me feel low as makes me feel guilty even more for not being with mum but there is nothing I can do as she has her partner and carers there.
Just wish I had a magic want to make it all better. I cannot imagine my life without my mum. 
HI Charlie35
A warm welcome to the community. Your mum sounds as though she's an incredible lady. My husband was diagnosed with GBM4 in Sept 2020 and was given 12-15 months at that time so for your mum to have fought it this long is amazing. Sadly GBM4 never has a happy ending and its heartbreaking watching those we love decline.
There's no right or wrong way for anyone to feel or act in this situation so please do not beat yourself up here. This is a rough rollercoaster ride...I get it! I'm riding it too and we're in no man's land with regards to time. The very nature of these cruel tumours makes it nigh on impossible for the doctors to give an accurate prediction for families and that just makes it harder on everyone.
You need to be a wee bit selfish here though |(honestly) and do what's best for you to get you through this. As you say yourself, there's folk taking care of your mum. You need to take care of you. You need to take time to process what's going on and to do things that help you recharge your batteries. For me that means going for a walk, doing some yoga, journaling and actually going to work. Those wee things help us to hold onto some normality. Yes there are rough days but break them down inti chunks. It's a bit like playing mindgames with yourself... if I can make it to lunchtime I'll be fine....if I can get to 5pm I'll be fine...that kind of thing.
This group is really supportive so please reach out whenever you need to. There's always someone around who gets it. You might also want to check out (+) Family and friends forum - Macmillan Online Community
It’s always good to talk so please remember 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. Stay strong. You're coping so much better than you give yourself credit for. (you'll just need to trust me on that.)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
