Hi everyone,
My name is Alex, and my mum has recently been diagnosed with a Glioblastoma.
An otherwise fit and healthy 60 year old, a few months ago, mum developed foot drop and left sided weakness.
A few GP trips later and after chatting to the doctors and physios, we were expecting nothing more than a bulging disk. A spinal MRI showed a completely normal back. This prompted worry from the doctors who then issued a 2 week wait referral for mum, however they still didn’t expect anything sinister. Mum then started having what now know as focal seizures. An ambulance came out and they determined it to be a “compressed nerve” and nothing much to worry about.
My gut told me this just wasn’t the case, so one day later and another seizure later, i was taking mum to A&E. 7 hours later we were seen by a doctor who said “well it doesn’t seem like the hallmarks of any seizure or anything too nasty but we will refer you for some MRI scans within 48 hours.”
After waiting all of the next day, we were then told that the consultant had deemed mum not urgent and to be booked as an outpatient with an estimated waiting time of…. 33 weeks. Thankfully, my sister had recorded mums seizure and I sent that to the hospital, unsurprisingly she had her appointment the day after.
I had moved to London on this day, with plans to return at the weekend. Then a phone call from my sister, “mum has a brain tumour.” Nothing really prepares you for a call like that. I can recall just throwing a bag together and driving back home not really thinking anything.
Mum then had a contrast MRI which confirmed the tumour and a few “flicks” to which we were told that this is likely a GBM4, but would need a biopsy to confirm. Two weeks ago, the tumour bled, causing mums left arm to go completely dead. Last week she had a craniotomy to remove the clot and confirm the diagnosis with a biopsy.
We received the full diagnosis on Friday, brain cancer. We are now awaiting for transportation of mum to our local hospital so she can begin radiotherapy and chemo.
I guess in joining these forums, I’m hoping people can share their experiences with this horrible disease and offer any positive stories about their loved ones.
Thank you for reading my story about mum so far!
Alex :)
Hi Alex,
Welcome to the forum and glad you found us. You've all been through a lot. You're right that there's nothing that can prepare you for hearing "brain tumour" for the first time. Even when we suspect something untoward is happening, to actually hear those words was a terrible shock.
My wife is 48 and has a GBM that was diagnosed last June. She's had debulking surgery, radiotherapy and done 6 months of temozolomide which tends to be the standard first line chemo treatment. From what you've said it sounds like debulking surgery wasn't an option with your mum?
There's lots of really useful information on the Macmillan site about different aspects of this cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges you may face.
It’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
This is a tough gig so don't forget to look after yourself as well. You'll be going through trauma as well so go easy on yourself.
Do just come back with any questions you might have about all this or feel free to just have a rant. There's quite of few of us on here so we can all empathise with your mum's situation and can often offer some practical help on managing the various things this will throw at you.
All the best,
Chris
HI Alex
I'd like echo Chris' warm welcome to the group. So sorry to hear about your mum and all that you have been going through. Nothing prepares you for hearing that diagnosis.
My husband then 50 was diagnosed GBM4 in Sept 2020. He had surgery to debulk the tumour followed by the 6 weeks of oral chemo/radiotherapy then refused all further treatment at that point. He's still with us despite the prognosis we were given at the time. Physically he's in miraculous shape (he was a marathon runner so that fitness has stood him in good stead) but the majority of his symptoms are cognitive/mental, presenting more like dementia than cancer most of the time.
I don't want to repeat Chris' sage advice here but would echo that this is a safe and supportive space so please reach out here anytime. I've personally drawn a lot of support from this community.
Over the past year or so I've written a few community blogs for MacMillan and thought this first one might help a little with the stage of the journey you are at
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
This is a tough emotional rollercoaster ride so please make sure you are taking care of yourself here. Don't underestimate the impact this news has had and know that its ok to take "me time" to recharge your batteries. It's essential. After almost 34 months riding this rollercoaster I'm not too proud to admit that I am an exhausted- mentally physically and emotionally. It can be a tough gig.
For now though I'm sending you 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
Hiya.
thank you for the message, it’s much appreciated.
I’m so happy to hear he’s still here and by the sounds of it, doing well all things considered! 
I can completely understand what you mean with the dementia side of things, my nan has dementia and it can be tough to hear some of the things that happen, so in a way I understand how things might be for you. I really admire your attitude towards this however, you are a true inspiration to us going through this journey, and I really appreciate it!!
im doing my best to ensure I’m having “me time”, I thankfully have a wonderful support network, including my partner who has been my rock since the start of this nightmare.
Thank you again for your message, sending hugs to yourself and your family, I’m wishing you all the best and will see you around 
Hey Grace,
Thank you so much for sharing your dads journey. It sounds like both you and your family have been through a literal rollercoaster, and I admire the fact you’re still here sharing the positive messages.
iI am so happy to hear he’s seeming more himself this last week, despite the memory issues, I can imagine compared to how he has been, this is a huge moment for everyone in your family!!
Like yourself, I wish I could offer any sort of advice, the only thing I can say is that, if you ever need to rant please just drop me a message and I’d be happy to talk anything through.
Please don’t apologise either, I really appreciate your strength in sharing both your dads situation and your situation/ feelings, I know it isn’t easy to do so.
Thank you so much again for sharing and responding. Sorry if my replies are missing anything; I’m running on empty as you can imagine 
Take care,
Alex
