So it's been 10 weeks since my mum got diagnosed with stage 4 glioblastoma, she had surgery which caused her to have a stroke she now left with no movement down her right side and lost most of her speech, Friday she lost her vision so they did a scan which showed it had grown and that's why she lost her vision the scan showed it had grown 8mm so delayed her radiotherapy again because they need to make sure they get the right place, but I'm really struggling to find out how she feels, I feel she is still trying to protect us about what she wants because she doesn't want to upset us, how can I get her help with this she's not mobile so I need someone to come talk to her, I feel this is just the start of this horrible nightmare, my dad is also struggling I just don't know how to help
so sorry to hear about all that you, your mum and your family are going through. This GBM4 journey is beyond cruel and as you've seen can change matters so quickly.
Have you spoken to your mum's oncology team about your concerns or your GP? I know when my husband was first diagnosed with his GBM4 they offered him some counselling- an offer he declined. There may be an option for your mum to speak to someone skilled in communicating with folk who are going through this. A friend of mine used flash cards to try to get her mum to tell her how she was feeling and to ask for things after a severe stroke but if your mum has now developed sight issues that may not be the easiest suggestion.
Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team. It might be worth a call to see if the helpdesk have any other options.
I wish there was more I could suggest. You're so right when you say this is a horrible nightmare and I really feel for you all. Each of you is going through a separate journey so please remember that MacMillan are there for you and your dad too. There's no right or wrong way to deal with this- we just do our best but some days are so much harder than others.
Please take care of yourself too here. This group is a safe supportive space so please reach out any time.
For now I'm sending you all a huge virtual hug, Stay strong. You're coping so much better here than you give yourself credit for. This is a tough gig...one I've been living with my husband for 20 months so I get where you're coming from.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm