My daughter Sasha is 41 and just been diagnosed. After about 4 years carefully watching a glioma with regular MRI scans, her specialist thinks that surgery in June is now the best option.
We would love 
to hear from anyone who can give help or advice in any way. Right now, the whole family are devastated as we try our best to support Sasha and her young son.
Have you any knowledge of new research or treatments? Any experience of how to cope before and after surgery? Any other useful advice or information, perhaps links to other sites overseas?
Please message on here as it may help others too.
Many thanks all.
Daniel
HI
a warm welcome to the online community. Sorry to hear about your daughter. Life's too cruel.
I have been supporting my husband through his GBM4 journey since he was diagnosed in Sept 2020 so can only speak from what I have experienced with him. The neurosurgeon opted to do an awake craniotomy to debulk the tumour. A week before the op we met with a speech/language specialist who took him through some basic questions that she planned to use as the baseline responses while in surgery. In my husband's case that plan de-railed slightly as he had a major seizure two days before surgery that changed his ability to understand and communicate. His original tumour was in the area that controlled speech/language and understanding. The op itself lasted about 5 hrs I think ( was a long time ago now) and he recovered well from it. He was home two days later.
About a month after his surgery he went through 6 weeks of oral chemo(TMZ) and radiotherapy in combination. He coped really well with this and there were no major side effects. He was up and about every day throughout. There was some hair loss around the area where the radiotherapy was targeted but this grew back fairly quickly. His main side effect was fatigue. That kicked in about week 4 and lasted for about 4 weeks after. He finished treatment in Nov 2020. He was offered further oral chemo (a double dose of TMZ) on a 28 day cycle (5 days of chemo tablets/23 days rest) in Jan 2021 but he declined this.
Between then and now its been 3 monthly MRI scans to monitor things. There was no regrowth until end Sept 2022. He's still with us but he is now under the care of the local palliative team.
Everyone here is unique and I've grown wary of published timeframes etc as these are best guesstimates based on averages and no one is average. We were never offered any clinical trials or research drugs but that's not to say these won't be available in your health area.
I can empathise with how you are feeling. This rocks the entire family to the core and there's no easy way to get through the journey. We have two adult children (now 23 and 25) and its been tough on them. It's been tough on us all. Take things one step at a time. Focus on the known facts and not the what ifs. Allow all the emotions to flow. It's the strongest most resilient people who express their emotions. It's far healthier than bottling it all up.
Talking to younger children is trickier. You want to be honest with them without scaring them and use language at a level that they understand. Kids are incredibly resilient wee souls.
There's a wealth of information in the main website. I took the liberty of looking up the link Supporting someone | Macmillan Cancer Support
This group is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We're all here for you,
I'm sure some of the other members will be along shortly to share their words of wisdom.
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 make sure that you take care of yourself too here. This is a gruelling rollercoaster ride at times so you need to ensure that you are in the best position to support your daughter here. Taking time for yourself isn't selfish - it's essential to keep those batteries charged.
I hope this has been of some reassurance.
For now I'm sending you all a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
