Dad (59) recently diagnosed with Grade 4 Glioblastoma (Subtotal Resection). Looking for experiences with motor/speech recovery and general advice.
Hi Reddit,
I’m (23F) in the UK writing this post straight after the discussion with my dad’s neurosurgeon and his formal diagnosis of a stage 4 GBM in his left temporoparietal region. I am his primary caregiver in this circumstance alongside my mum supporting me. I’ve been reading posts within this community to understand others’ experiences to better support my dad, and it’s been greatly helpful for myself - so thank you in advance for this read and solidarity.
My dad (59) had a sub-total resection on August 7th and we are currently waiting on his MGMT methylation status and IDH mutation results. His speech, language and comprehension have declined rapidly, with initial word retrieval symptoms first appearing 1st-2nd week of July.
Following resection, his speech and comprehension has deteriorated significantly. We are a bilingual household (English and Gujarati), and his English been affected more. He has also developed right-hand dexterity problems affecting using utensils/cutlery, doing fiddly things and when cooking.
My mum and dad run a small newsagent together with minimal staff. I’ve taken a leave of absence from my job to step in, manage the household/business admin, and support them full-time.
His priority is preserving his function, dignity and quality of life. He is very worried that chemoradiotherapy may worsen his symptoms, especially as his recovery from surgery has been slow.
We would really appreciate hearing from anyone with experience of:
· Bilingual aphasia and whether one language recovered faster
· Speech or hand function improving as post-operative swelling settled
· Early speech therapy, OT/PT, home exercises or useful adaptive tools
· Subtotal resection and whether molecular results changed treatment
· Exploring clinical trials before radiotherapy
· Supporting a loved one’s independence while taking over practical responsibilities or a family business
· Someone who has had a GBM or brain tumour in a similar region
The current preliminary plan recommended by his team is 5–6 weeks of chemoradiotherapy, followed by 6 months of maintenance chemotherapy.
How did you balance the possibility of more time against preserving the person’s ability to live that time as they wanted?
Thank you for reading, any experiences or practical advice would mean a lot.