Husband with Grade 4 Glioblastoma

Hi this sounds exactly the same as my husband. He had his op on Tuesday and was yesterday told that they couldn’t remove it all so will be starting other treatment. We have 2 young children my husband is 47 and I am totally heartbroken and scared. I wanted to reach out to you to offer support as I totally understand your fears. It’s devastating and just so unfair. Hope you and your husband find strength to get you through xx

Hi this is such a rollercoaster journey, my husband was also diagnosed with g4 in October last year.  The emotional effects have been huge for both of us, he had his surgery which also went well.  In January he started his radio and chemo , it was a tough 6 weeks but he got through it OK.  Since October though we have been trying to enjoy life and do lots of things whilst he is still well enough. I guess what I'm saying  is that although this is a totally devastating thing to deal with you and your husband can still have good times.  It's so important to try and stay positive and just take a day at a time.  The prognosis they give is an average and  people often go beyond the initial prognosis.  

I feel your pain and heartache though and sending lots of love.  Xx

Hi Sroses 

Its a terribly unfair and devastating thing to deal with.  We are nearly 8 months on from initial diagnosis and also have a 12 year old. We are living for each day as much as we can and refusing to think too far ahead. Sending lots of love xx

Hi love, yeah that’s the only thing to do live each day and make memories. Sending you lots of love and hugs xxxx

Your family are so young, do you have any extended family to help out. Our kids are grown up and they’ve been so supportive. How is your husbands state of mind

Yeah I have lots of family support. It’s so hard to explain to the kids and for them to see their dad not well. Just had another knock back as he was hoping to come home tonight but he now has an infection. Sending you all lots of love xx

HI MaryW

a warm welcome to the group. I had been about to say its a safe and supportive space but you've experienced that already I see.

I've been supporting my husband through his GBM journey since his diagnosis in Sept 2020. He had surgery to debulk the tumour followed by the 6 weeks of oral chemo/radiotherapy and then in Jan 2021 declined all other treatment. His tumour is/was in the area of the brain which controls speech, language and understanding so our journey has differed from many on here as he's had very few physical symptoms. His symptoms are largely cognitive/mental but that comes with its own challenges.

I remember only too well how scary those first few weeks/months were but be patient with him. It's such a huge thing for you all to process and come to terms with. My husband had some very dark days in those first few months then seemed to turn a corner. He's a fitness freak so that became his primary focus and still is. He was 50 when he was first diagnosed. 

He has two key coping mechanisms that have served him well for 33 months - running and denial. He refuses to talk about things related to his diagnosis, keeps most things to himself and sees that its just for him to deal with. The rest of us ( we have a son 25 and a daughter 23) see it differently as we know it impacts everyone.

G coped really well with the 6 weeks of oral chemo/radiotherapy and suffered no real side effects apart from fatigue which kicked in around week 4 and lasted for a month after the treatment ended. He lost a little patch of hair around his scar where they targeted the radiotherapy but it quickly grew back. His sense of taste altered for a while (he went off creamy things) but that soon passed too.

Please take care of your wee self here too. It's fine to be scared. I'm still scared all those months down the line. It's the strongest and most resilient among us who show their emotions and admit to them and that's a sign that you are dealing with them rather than bottling things up. Your world has been turned upside down and you've been flung headlong into this journey with no planning and no idea where its going- so who wouldn't be scared? Please take things one step at a time. Focus on the facts that you have been told and steer clear of Dr Google (He's scary). 

Yes there will be tough days ahead but there will be good days too ..well better days. On the rough days break it down into bitesize chunks and take it a section at a time. As I said this is a safe and supportive space so please reach out here anytime. There's always someone about as you've seen, someone 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.

Personally I've drawn a lot of support from this group and Glioblastoma multiforme brain tumour forum - Macmillan Online Community.

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 do to support, just ask. I'll be open and honest based on our journey.

As I said we are 33 months along the road. We are now in the palliative care phase but that said my husband walked 18 miles yesterday  then spent an hour on his bike in the garage. We take each day as it comes and see where it leads us.

I've waffled enough. For now, I'm sending you a huge virtual hug and lots of positive energy. Stay strong. You're coping so much better here than you give yourself credit for (You'll just need to trust me on that.)

love n hugs

Wee Me xx

My husband had an infection too. Ended up staying another week in hospital. He was doing really well when he came out of hospital but he seems to be getting more withdrawn and depressed 3 weeks post op. I think the reality of having to have radiotherapy and chemo is kicking in. He’s really struggling. He’s also been told to stop his steroids, think that’s having an effect 

Thank you so much for your kind words. They mean so much. My husband’s tumour was right frontal lobe, so really affected his emotions. The few weeks before his op were really challenging, it was like living on a knife edge and it was totally exhausting. Post op he’s much calmer, but very depressed. He says that he’s had enough already and he’s not even started his treatment. I’m permanently anxious and I’m having very little sleep 

Oh MaryW, I feel for you. This is a gruelling emotional rollercoaster for all involved.

I saw on the post above that  you mentioned the steroids. If you feel he is better on them challenge back as ask if he can remain on a low dose. It seems that a little can make a big difference so no harm in asking. Steroids can also impact mood. They make G grouchy but the benefits are worth the bad moods for now. He too has been told to stop and next week is due to be his last week on them. We'll see....

I've shared my "story" in a couple of blogs within the community over the past year. here's the links just in case there is something there that can help you.

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

I meant it when I said before that you need to take of your wee self here too. Taking "me time" isn't selfish, its essential to help you keep your batteries charged, Accept any help friends may offer too. (I'm taking advantage of that for the next couple of days. G goes away with two of his friends to a lodge with a hot tub and fire pit for 2 nights tomorrow - I don't want to even think about what 3 guys in their 50's will get up to  in a hot tub LOL)  Even taking ten minutes to sit with a book and a coffee or a few minutes to go for a walk can make a huge difference.

As I mention in the blog, I've found journaling really helps me. Once you write those thoughts down and see them in black and white they do seem less scary. Writing them down can take the "power" out of them. Try it.  I've filled about 6 or 7 journals over the past 33 months and even going back to re-read them can help brings things back into focus. Try it. You've nothing to lose.

sending you love and light and hugs

Wee Me xx