Wife recently diagnosed with glioblastoma, grade 4 ......

Welcome to the club that no one wants to be in! So sorry to hear about your wife. We are about 6 months ahead of you - my wife was diagnosed in November and had surgery then. She’s done the 6 weeks RT/chemo and is about to start 4th cycle of monthly chemo. 

I’ve found the community here incredibly supportive. I’m sure you will hear from people here with a lot longer experience than me - and it’s comforting that some have been dealing with this disease for a long time. There are people now who survive a long time, Many will tell you that they have way exceeded their doctors’ original prognosis.

You will have loads of questions. I certainly have. Good luck and try to pause the guilty feelings - you are doing an amazing job in tough circumstances. Sending hugs. 

Hi there,

Welcome to the forum and so sorry to hear your news. I care for my my wife who has a GBM and we're 11 months in now from diagnosis. Thankfully, like  your wife, she was able to have surgery and treatment and we finished the temozolomide in April. We now just go from one MRI to the next hoping there's no signs of active regrowth.

There's lots of really useful information on the Macmillan site about different aspects of 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.

Have you or your wife been offered any counselling at all? Either way 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.

All the best,

Chris

P.S. Hope you got back to sleep OK? I struggle sleeping at times so the GP has given me something to take when thing are bad as I really need to be alert during the day so I can provide the care my wife needs. 

Hi there,

I am so sorry to hear your situation. The early days are really hard, but you do settle into a new sort of ‘normal’. We are now 21 months into our journey (my husband has glioblastoma) and no one has ever given a prognosis.  I have done a lot of googling and it’s not great reading. Currently I feel it’s coming back but the scans don’t show it, which is hard and weird. The old cliche of enjoy each day/one day at a time is what I live by.  There is a Facebook group glioblastoma survivors to thrivers, which gives me hope, lots of people on there who have survived for many years. I wish there was a support group as well that could get us together. I feel it isn’t quite the same journey as other cancers, and family and friends don’t always get it!

i’m glad you reached out here…I only just recently joined and am very glad I did. 

please after yourself and go with the flow with how you are feeling. It’s awful for our loved ones but also not so easy for us. 

Sending love 

HI

a warm welcome to the online community. So sorry to hear about your wife. As you've already seen this is a safe and supportive space. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.

Chris has already given all the advice I would so i won't repeat it.

I've been supporting my husband through his GBM journey. He was 50 when he was first diagnosed back in Sept 2020- feels like a lifetime ago and five minutes ago all in one breath. Like your wife he too had surgery followed by the 6 weeks of oral chemo/radiotherapy combined. he coped really well with it and had no real side effects other than a bit of hair loss around his scar area and fatigue kicked in around week4 and lasted for about a month afterwards. The first MRI we had after the treatment cycle ended still showed a lot of post-radiotherapy inflammation but it was the one 3 months after that which showed things were stable. He declined all further treatment after the initial 6 weeks - a decision I had to respect. He remained stable until the end Sept 2022 when that MRI showed fresh tumour growth. He had his final MRI in Feb 2023 and after that we were passed off into the palliative care phase. That said, he's still physically very fit and ran 8 miles this morning. (No idea how he's managing that now but that's a long story for another day) 

His symptoms have almost all been cognitive due to the location of his original tumour. It was in Broca's area of the brain that primarily controls speech, language and understanding. His symptoms are more like dementia than cancer. Since the end of Jan 2023 he has struggled with his eyesight as the tumour is impacting the optic nerve.

We were given a prognosis but he's blown that out the water a long time ago. Something it takes a while to get your head round is that the prognosis is only a best guesstimate based on published averages- no one is average here. Everyone is unique and their journey will be unique to them so please focus on the facts as you see them and are told them and steer clear of Dr Google (He's a scary dude)

Please make sure that you take care of your wee self here. This is tough rollercoaster ride and I don't mind admitting that after 2 years and 9 months I'm exhausted mentally, physically and emotionally. Taking time to recharge your batteries isn't selfish - it's essential to help you keep those batteries charged so meet your friends for coffee/a pint, go to the gym go for a walk - whatever it is that you would normally do for you, do that.

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's anything I can help to answer, please just ask.

For now though I'm sending you both a huge virtual hug and lots of positive energy. Stay strong. And I hope you manage to get a better sleep tonight.

Love n hugs

Wee Me xx

Hiya, and thanks for your post. The club that no one wants to be in.... true... but made me laugh.

Hey MargateKid...

Welcome.  Nothing much to add.  Just wanted to say hello.

Knowing the prognosis is only really helpful in so far as it encourages you to take each day as it comes and plan to find as much fun as you can whenever you can.  Prognosis isn't that meaningful - it is the average of a large population - you never know where you will be on the curve.  It is a bit like saying that there is a 70% chance of rain five days - so what?  Doesn't tell me which days I need to take an umbrella! 

You can survive on less sleep for a pretty long time - but, as you have identified, it won't help you to function and to look after Mrs MargateKid.  I suspect that part of the problem may be that you get no time to decompress during the day, so the only chance you have to do it is at night.  I wonder whether you can call in the reinforcements to spend a little time with your wife during the day so that you can get out for a walk or something, or a beer with a friend.  I found that sort of thing very valuable at various points duing our journey.  But in reality - I'm sure it will settle down in time.

So for today... look after you.  People will keep saying that - but it is super-important.  Count your blessings where you can (son's wedding being a case in point).  Take things one day at a time for now... we found things pretty full on until my wife had done the radio and chemo, then things settled into a bit more of a rhythm and it got easier to plan to get out and do things. 

Thanks for sharing and letting us in.  People here have a wealth of experience and large reservoirs of empathy - we have all stood where you are standing.  It is super-daunting - but you've got this.  There are lots of resources that will be there to support you when you need them.

Big hug...

Pete