Hi All,
I'm Nikki, in my 30's, 3 kids aged 13, 11 and 7. My mum is Sarah, 59.
Mum went into A&E on the Fri 19/04/24 thinking she'd had a mini stroke (words slurring, face slightly dropping, intense headaches) She was in hospital for a week and had all sorts of tests (I'm struggling to recall what - at this time I wasn't making notes as didn't quite know what was going on!) including MRIs, tests carried out showed no stroke, but a lesion on the frontal lobe, after further scans we were told on the Tue 23/04/24 that it's a brain tumor/cancer.
Since then we were told that we'd have an "action plan" on the Fri 26/04/24 (she was discharged this day too) which was then pushed back to Mon 29/04/24 due to not having all the test results back.
At the appt 29/04/24 (I was in the meeting via video call and didn't catch everything) they said: Brain tumor; Grade 3/4; 3x3cm.
Two options : 'big op' take as much out as they can and then chemo or 'small op' take biopsies and treatments to "manage" it.
They needed to do further MRIs to see if it's in an area that would impact on her speech 'area'. Apparently because she's left handed her brain could be different and if the tumor is in the 'speech area' they won't be able to do the 'big op' as it would cause too much damage.
MRI scan booked for tomorrow 03/05/24 so they aren't messing about.
Wondering what the likelihood is that we'll find out more tomorrow at the MRI?
At what stage do we get a prognosis as such? After the op?
Thanks, Nikki x
HI Nikki
a warm welcome to the online community. So sorry to hear about all that has been going on with your mum. What a whirlwind few weeks you've had. I hope the scan today has gone smoothly.
I spent just over 3 years supporting my late husband through his stage 4 Glioblastoma journey and the memory of those initial scary weeks will live with me for a long long time. (You can read the gist of our tale in my bio).
Ok first thing I'm going to say is breathe. Pause and take stock. You have had a huge amount to process and please don't underestimate the toll this is taking on you.
With regards to future appointments etc can I suggest that ahead of the appointment you write down all your questions/fears/concerns and your mum's and take those notes with you. There is no such thing as a daft question so ask them all. Use the notes as a script to make sure you don't forget to ask something that is important to you both. If you don't understand the answer, ask for clarity as these early appointments as your discovering are completely overwhelming.
Stay away from Dr Google. He's a scary dude! Focus on what your mum's medical team are telling you as they are ones best placed to give you the relevant information.
In G's case, he had a scan on 26th Aug 2020 that confirmed a primary brain tumour in Broca's area of the brain. Initially the plan was to biopsy but we learned on 2 Sept 2020 (our silver wedding anniversary) that the MDT meeting had decided to skip straight to , as you put it , "the big op". We met the neurosurgeon on 4th Sept and he said that day that he was 90% certain it was a Glioblastoma. Surgery was arranged for the following week and a week after that we got the full diagnosis/prognosis.
As time went on there were maintenance MRI scans every 3 months and we had to wait 2 weeks roughly for the results of each of those.
Prognosis is one I personally struggle with, largely because G blew every timeline out the water. Focus on how your mum is physically/mentally and try not to think in timelines. Everyone is unique so there are no hard and fast guarantees with any of the timelines a doctor may give. We were initially told 12-15 months but in the end we had 3 years 2 months and 1 day.
This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it. someone to hold your hand and to offer you a virtual hug when its needed. You're not alone. We've got you.
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.
If there is anything else that you want to ask me please drop me a message. Happy to share my experience with you.
For now though I'm sending you and your mum a huge virtual hug and lots of positive energy. Stay strong and take this one step at a time.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thanks for your reply. We had no idea that being a lefty could cause such a fuss 
but thankfully the tumour wasn't in that dodgy area, so they've 'chopped it all out' as my lovely children have taken to saying!
It certainly seems like Mum is in very good hands, and things are happening at quite the pace!
I feel like I've lived a year in the last month, but Mum is so positive, which is massively helping her - and in turn helps me.
X
