Hi all, this feels so bizarre writing to a group of strangers about whats going on in my life, especially when everyone in here clearly has their own struggles to be dealing with, but here goes…
in oct 22 my mum (64) was diagnosed with a Grade 4 incurable Glioblastoma, and given a prognosis of 1 year.
Her partner of 11 years decided it was too much to deal with and so ended their relationship and there was no option but for Mum to move in with me.
i am 32 and have become my mums carer, as well as continuing full time work.
recently, her symptoms have worsened and im struggling to physically take care of her. She is falling down often and i cant lift her or help her up.
She has undergone the craniotomy, 6 weeks of daily radiation and chemo and is now undergoing 6 cycles of oral chemotherapy.
i feel so useless. I feel like im not doing enough, but i have to work as i am a single income household.
im hoping reading other peoples experiences might help me, as right now, im in an extremely bad place and just want to find some comfort in anything really.
C x
HI C
I'm going to start by sending you a huge hug as you sound as though you need one.
I'm so sorry to hear about your mum. Life's too cruel.
My husband was diagnosed with GBM4 in Sept 2020 (he was 50 at the time) so I can empathise with what you are going through.
Have you spoken to your mum's doctor or her CNS since the symptoms started to change? Might be worth a phone call. I was advised to report any changes that caused concern. It might be a simple tweak to her medication that's needed or they might need to review her scans. A GBM4 journey is a real roller coaster ride for everyone involved.
This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets its. Someone to hold your hand and to give you that virtual hug when you need it. You're not alone. We've got you.
You might also want to check out one or two of the other groups on here Glioblastoma multiforme brain tumour forum - Macmillan Online Community and Carers only forum - Macmillan Online Community. Personally I've drawn a lot of support from these over the past couple of years.
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.
Please don't be too hard on yourself here. You are not useless although I do know that feeling only too well. You've been flung headlong into this journey and it takes time to get your head round things...and it takes as long as it takes. You can only do as much as you can too.
I've written a couple of blogs for this community that might be of help. Here's the links
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
I'm not big on giving advice but please look after yourself here. You need to keep your own wee batteries charged and taking "me time", even if its only 30 mins for coffee with a friend, is essential. I'll not lie, this is a gruelling rollercoaster ride but you will get through it.
If there's anything I can help answer or do just ask.
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
