Hello, so back in April this year my 23 yr old daughter of as diagnosed with a brain tumour, she had surgery to remove 90% of it and had 30 sessions of radiotherapy.
she’s on steroids and kepra , as well as clobazam,
most days she cannot be bothered to do anything , she sleeps a lot and has put weight on due to the steroids, she’s slow in walking and I feel like there’s no end game for her.
She due to start chemo next week after a delay as she was having focal seizures. I’m looking for some advice on how I can motivate her , feel absolutely useless
HI Fisharefriend
a warm welcome to the community. So sorry to hear about all your daughter has been going through. Life's too cruel.
I'm supporting my husband through his stage 4 brain tumour journey so we're on a different path. He had radiotherapy as part of his treatment and his main side effect from that was fatigue. It last for a month or so after the treatment cycle finished. You don't mention when your daughter finished her radiotherapy but don't rule out that those sessions are still impacting her.
It sounds as though its all been a lot for her to process at such a young age so again that could be impacting her overall mood. Has she had any counselling since her diagnosis? Might be worth a chat with her CNS or even your GP if its something she might be open to trying.
You mention she's had focal seizures. My husband has struggled with those in recent weeks and again those are tiring.
I get the feeling useless bit. I've felt pretty useless since G was first diagnosed in Sept 2020. One thing I have come to learn over the past three years is that you need endless patience. It's not easy...I get that. There's some guidance on the main website around supporting someone through their journey. Here's the link Supporting someone | Macmillan Cancer Support
This community is a safe and supportive space that's open to both of you. Please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone - neither of you. We've 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.
I hope some of this has helped.
One coping mechanism that I use personally that might help her is journaling. No one need ever read what you write but seeing the words down on the page takes a lot of the fear and power out of them. It's great way to vent your frustrations too. Might be worth a try.
For now though I'm sending you both a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better here 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
you're welcome. I've drawn a lot of support from this community. Another group you might want to explore is Carers only forum - Macmillan Online Community
Just a thought
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
