Hello,
I was hoping for a bit of knowledge/advice.
4 weeks ago we thought my dad had taken a stroke to then be told it was infact a mass on his brain. Glioblastoma, no biopsy, no operation and no treatment.
We got Dad home last Friday and apart from the tiredness hes been in good spirits but today they have reduced his steroids down to one and my mum was told we will see a change now! Will they increase the steroids again if his symptoms get worse again?
This has knocked me for six. It doesnt seem real. Im terrified of losing my dad and I certainly dont want to see him in any kind of pain.
Thank you x
Hi Daddysgirl47
a warm welcome to the group. So sorry to hear about your dad. Life's too cruel.
My husband was diagnosed with a glioblastoma in Sept 2020 and was steroids following his surgery and during his 6 weeks of treatment. We were told that the primary reason for taking them was to prevent the brain from swelling, but the dose was monitored closely. I'm sure your dad's medical team are doing the same. Doctors definitely don't seem to like folk being on steroids if they don't need to be.
We found that the steroids made my husband more bad tempered and irritable so the change they are predicinbg may be behavioural rather than physical. I'm no expert but would advise that if you have questions/concerns around any changes of medication that you ask the team.
I'll be honest - my husband lied to me about actually taking his steroids for the last couple of weeks they were prescribed. He confessed to binning them when I reminded him that he needed to speak to the CNS about getting the prescription renewed. I was driving us home from one of his appointments when this confession came and it was nearly an emergency stop moment on the M8 as I said "You've been doing what?!" He said he didn't like them and that they weren't doing anything so he decided he wasn't taking them anymore! Men! The CNS gave him fits when she found out!
This group is a really safe and supportive space so please reach out here anytime. You're not alone. There's always someone around to listen who gets it, someone who understands, someone to hold your hand and off that virtual hug when its needed. You might to also explore 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 groups over the past two 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 also take time to look after your wee self here too. From experience this is a rollercoaster ride of emotions so please make sure you take time to recharge your own batteries. It's not selfish to take "me time". It's essential to help you keep those batteries charged.
For now I'm sending you a huge virtual hug. Stay strong. You're coping so much better than you think you are (you'll just need to trust me on that). Remember to breathe.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
