Hiya, thank you for sharing your experience. I'm deeply sorry to hear about your lovely Dad and what your family are going through. I too am struggling to find consistent information online, I find this forum helpful but specific GBM4 threads are less common - Thank you for creating one! If you don't mind my asking, how did your Dads tumour respond to the chemo?

My lovely Dad was officially diagnosed last week. He first passed out 20th November 2021,ambulance rang lots of test done but discharged as a 'slight faint', he passed out 4 More times until we rang an ambulance again on the 19th December 2021 thinking he'd had a stroke - left side weakened, face drooped, speech slurring, difficulty walking - he'd been running marathons, travelling the world and fixing oscilloscopes for the past 40 years so all of it was definitely out of character.  He was operated on the 22nd they removed all they could and amazingly he was discharged 3 days later on Christmas Day! It was a wild week to say the least. We've recently learnt from biopsy results it's bad news, Dad is currently still so well, he's able, working at low capacity, he's due to start radio and chemotherapy next week and I think the nerves are starting to hit him, but he's trying to keep it from us I feel. Honestly I'm worried too, to see him physically unwell will be a first for us. 
 

I couldn't imagine going through this with a small baby too, my daughter is 5 and usually has her head in the clouds anyway so that's a small relief for now. Well done Mama for getting through yesterday, today and tomorrow! I am sending you strength, hugs, love and coffee. I hope you're able to catch a break for yourself (I know that's unimaginable at times!) and I pray for your Dad, for comfort and for as much time as possible with his loved ones.

Best wishes.

Thank you so much for your reply. I'm so sorry that you're going through something similar, it's such a hard situation for everyone involved, especially when your dad sounds like he is usually very fit and able. That sounds similar to my dad who was in the merchant navy and army and has always been very fit! Not like a 'normal' 75 year old at all usually.

From the MRI they did after the treatment, the tumour had not shrunk but looked 'puffier' which the consultant put down to it *maybe* beginning to break down from the treatment but he couldn't be sure until some time had passed since his treatment ended. I'm hoping he will have another MRI soon, they were waiting to see how he felt before bringing him back in. 

Unfortunately due to the location of my dad's tumour it is inoperable so the treatment was all they could offer. 

Sending you lots of love, even with a 5 year old it still must be as tough as she is used to seeing Grandad and how he usually is up and about?

X

Nothing could ever prepare you for this could it? It's such contrasting behaviours from our usual healthy amazing Dads. Your Dad sounds like an impressive man, I truly wish him all the best with this journey.

I'm sorry to hear it's inoperable and in a tricky location. How's your Dad handling it all?
 

She's my beacon of light on the darker days as she always has been, but she doesn't understand why she can't jump on Grandad and go swimming like they used too. He was there when she was born, they're the best of friends so I'm unsure what or if at all to say anything to her just yet  

x

No nothing can prepare you at all! We went from my dad being prescribed physio for a 'neck issue' that was causing headaches to this diagnosis. 

He's not dealing with it well to be honest - he's been put on antidepressants as he's finding everything really negative and lacking motivation to do much at all. I think because its such a change to his usual active self he's found it even worse! Being someone who's usually really independent and living alone, he now needs help to do lots of things and he's found that hard too. 

How has your dad dealt with it so far?

I feel like that about my 2 year old, she has no idea what's going on but her cuddles make me feel a bit better on the difficult days! So lovely that your daughter and dad have a good relationship, it must be so tricky that you can't explain why things are different now!

X

Hello - I was wondering how you and your dad are getting on? 
 

x

Hello flower, thank you so much for checking in! We're doing well. Dad has finished his radiotherapy and chemotherapy, we've been told it'll be 8-12 weeks for another MRI. We organised a charity head shave (my dad, brother and brother in law) and raised over £2,500 for our local cancer treatment centre! That was a great focus and positive event. 
 

How are you and your dad? 
 

sending well wishes and virtual hugs 

A x

Good morning. I have GBM4 (aka Brian) and  I have had it since July 2019. I am currently on chemotherapy with MRI  approximately every 3 months. I was stable for 2 years but in September last year it came back and is now inoperable. However my last MRI at the end of January said it had gone stable again. We will not know if still in same status until next scan either end of April or May. My wife and children (both grown up) struggled at first to cope with it but we take each take at a time. Everyone is different so timescale for this all over the place. The treatment was difficult at first but it passes honest. I am 59 (60 next month) and will keep on fighting Brian until one of us throws in the towel. I have no intention of it being me. 

John

Hello! 
 

That's amazing! I'd love to do some sort of fund raising but I have a 2 year old and a 4 month old at home so it's a bit out of the question at the moment! Life is very busy and hectic.

I'm glad to hear your dad has finished his treatment. Did it go ok? Or as well as can be expected?

My dad has decided on no more treatment as the first round really took it out of him - he's basically been stuck at home as he finds it really hard to walk and up until recently was adamant he didn't want to try a wheelchair. We have had to arrange twice a day carers as he was struggling with basic tasks and forgetting to take his tablets which made him feel much worse! I think the worst thing has been his inability to realise what time of day it is - this is because he often falls asleep in the middle of the day then wakes thinking it's the morning when actually it's the evening.

Generally he is ok though - quite chirpy still and chatty. 
 

Thanks for getting back to me!

x

Hi John,

Thank you for replying! I'm so sorry to hear of your diagnosis, but your outlook is fantastic - I keep saying to my dad how positivity is the best way to handle things. I hope Brian is behaving himself and you are not suffering from any abject side effects!

x