Glioblastoma malignant

HI Agness

a warm welcome to the group. So sorry to hear about your sister. I hope her surgery went well.

I'm supporting my husband through his glioblastoma journey so I can empathise with what you are going through. He was diagnosed in Sept 2020 and those early weeks/months were overwhelming.

I shared my initial experiences on here a few months ago in a community blog - (+) Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community- There's also a lot of information on the main website that might help - here's the link Supporting someone | Macmillan Cancer Support . There's another group on here that you might want to explore too (+) Glioblastoma multiforme brain tumour forum - Macmillan Online Community

As for how to help your sister - be led by what she needs/wants. In the early days and even now, my husband is fiercely independent and stubborn. Don't be surprised if she wants time alone for a bit. Its a huge amount for everyone to take in and process and once he'd recovered from his op, my husband liked to go for long walks to think/process everything.

Also please take care of yourself here. It's been a lot for you to take in too and you need time to process it all. Supporting someone on this journey is emotionally draining so please take time to recharge your own batteries. Taking "me time" isn't selfish, its essential.

This is a safe and supportive community. I've personally drawn a lot of support from it over the past two years or so. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're  not alone.

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.

For now, I'm sending you both a huge virtual hug. Stay strong.

love n hugs

Wee Me xx

Thank you ever so much. The surgery went well, she had awake craniotomy. They managed to take out 98% which is really good. We are living together so it’s very hard to be strong all day long. It’s just so overwhelming and I already feel exhausted. Every time she coughs or going toilet during the night I’m waking up. I don’t know what to expect from radiotherapy, and how I will manage to see her in pain. Thank you for listening 

HI

My husband had an awake craniotomy too followed by 6 weeks of oral chemo/radiotherapy. He coped really well with it. He wasn't in any pain from it although he did complain regularly that they squashed his nose with the radiotherapy mask. It's tight fitting. He wasn't sick with the chemo tablets. They gave him strong anti-sickness pills to take for the first few days while his body adjusted to the drug. The only side effect he had was fatigue. It kicked in about week 4 and lasted for a month after the 6 weeks were over. 

To be honest, over the entire time, he's not had much pain. More recently, he's had a few really nasty headaches but painkillers have helped and he's been ok again within a couple of hours. Since his treatment finished the only drug he's been on is Keppra to prevent seizures. He did have an issue with blood clots in his lungs post-surgery and was on blood thinners for a while. 

It is all overwhelming and exhausting but you'll surprise yourself. You'll cope. Even on the tougher days, you will get through it. They pass. If I'm having a bad day/tough day, I'll break it down into manageable chunks eg if I can get to 10.30 I'll have a coffee; if I can get to lunchtime, I'll go for a short walk etc. The key is to take it one step at a time and one day at a time. You'll get there.

love n hugs

Wee Me xx

Hi Agness, 

Welcome and sorry to hear about the diagnosis. My Mums going through the same but without surgery. I agree completely with Wee Me that it’s ok for you not to be ok. It is emotionally draining and I’ve found that the lack of control on Mums life is what bothers her the most. 
I have learned not to push too much but be there to listen, encourage and get the tea and biscuits in regularly. 

We’re here for each other on this forum. X 

Hi All

I'm going through the same but also no surgery - too risky due to the location if the tumour. Apparently too weak for radiotherapy at the moment too and the type of tumour means chemo will be better to start with - was meant to start radio this week, but maybe later now, and chemo starting soon instead. Scared. Trying my best to stay up and hopeful. Such a whole load of fluctuating feelings.