Hello

Hi there,

Welcome to the forum and sorry to hear about your situation. I care for my my wife who has a GBM and we're about 10 months in. Like your husband, she's had surgery radio and chemo and is now on a treatment break until something else is needed. So just like you we are now living scan to scan or until she deteriorates significantly. 

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.

Have you or your husband 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.

You're clearly quite a way down this journey so sorry if this all stuff you already know!

Glad to have you here as a member and do ask questions or feel free to just vent anytime. 

All the best,

Chris

Thank you so much for replying Chris.  I haven’t accessed a lot but have been finding things a bit harder at the moment and I don’t really know why. This popped up in my email just at the right time.  Wishing you and your wife well. Thanks for all links!

Donna

HI

just wanted to echo Chris' warm welcome to you.

I've been supporting my husband through his GBM journey since his diagnosis in Sept 2020. We're a ways further down the road and are now in the palliative care phase. That said, G remains physically very active. In fact, I can't get him to stay in these days.

As Chris says, everyone's route through this journey is different. Almost all the symptoms we are dealing with are cognitive and more like dementia than cancer. 

This community is a safe and supportive space and personally,  I've drawn a lot of support from it over the past two years plus. There's always someone about 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!

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.

Please make sure that you take good care of your wee self here too. This is a gruelling emotional rollercoaster ride so taking some "me time" to recharge your own batteries is essential. So got for that walk, that coffee with friends, sit with a book and a cup/glass of something. Do whatever helps you to relax and unwind. For me that's taking a walk, practicing yoga first thing in the morning and writing or journaling. I also love listening to music and will escape to gig/concert whenever I can. I'm not too proud to admit that 33 months plus along this journey I'm exhausted - mentally, physically and emotionally.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Thank you so much for your response.  I wish I had made contact sooner! So sorry your husband is in the palliative stage, but sounds like you are ill managing to do things together. My G sleeps a lot but is still working. He is in a wheelchair if he has to walk far. His cognitive skills are not as they were before but it’s the headaches and the physical symptoms that affect him most. It’s so different for everyone isn’t it. 

Sending hugs to you too.  

Hey Donnagary,

The disease and the treatment do affect people.  I know that Chris and Wee Me can both attest to that.  I'm impressed that your husband is still working - but clearly he is having to deal with some pretty monumental challenges.

I guess I'll pick up on your comment "I have been finding things a bit harder at the moment and I don’t really know why".  I think that is just the pattern of being a carer.  You have a constant stress.  I think of myself as a bucket that can contain so much stress.  Most of the time I have pretty good capacity, but when I was caring for my wife most of my stress capacity was taken up with caring for her.  That meant that I had much less space to take on additional problems than I normally would.  So it didn't take much for me to overflow.  And some days / weeks / seasons are harder than others.

It is perfectly reasonable for you to be struggling - you have already been through a hell of a lot and you have to deal with uncertainty every day.  That is exhausting.  Be patient with yourself.  More than that... make sure you are as kind to yourself as you would be to someone else who was going through what you are going through. :)

Hopefully you have a few good friends / family members who you can be open with about how you are feeling and who will listen without trying to solve the problem (hint: they can't).  Preferably people who can get you out of the pressure cooker occasionally so that you can do something else for a few hours.

As the others have said... keep looking after yourself as best you can.  It is tricky to do that, but this is a marathon, not a sprint.  And remember... you are doing a really important job... keep going!

Big hug...

Pete