Glioblastoma, like a grenade going off.

Another one that cries in the shower here. That way the kids don't hear. My wife is also in her mid-forties and it is all shockingly bleak isn't it. We're trying to focus on the postives; 20 years of happy marriage, healthy children, wonderful memories. It is a very hard thing to do but we try to just take every week as it comes. 

Always just feel free to pour out all the bitterness here, it's a very cruel illness and we all feel similarly.

All the best to you both

HI WarmScarf

a warm welcome to the group. So sorry to hear about all you and your wife are going through. These tumours are evil beasts.

As Branoc has already said, please reach out here anytime. Everyone around here gets it. You're not alone. There's always someone here to listen and hold your hand and if needed offer that virtual hug.

My husband (then 50) was diagnosed GBM4 in Sept 2020 totally out of the blue after a funny turn while out running. Yesterday dealt us a blow as you've perhaps seen from my post in the group. To go from one tumour in 2020 to being told a month ago that there were 2 to now having seen for ourselves that there's 2 active new ones on top of the original plus 2 or 3 potential tumours was heartbreaking.

Over the past two years I think I have cried absolutely everywhere, including walking round Tesco doing my shopping. I've been through more emotions than I thought was possible but every day I still pick myself up and tackle the day. 

This is a gruelling journey for all involved. It's a complete emotional rollercoaster so please make sure you are taking care of yourself here as well as your wife. Don't let your own wee batteries go flat.

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.

For now I'm sending you both a huge virtual hug. Stay strong. Remember to breathe.

love n hugs

Wee Me xx

Thank you for replying Branoc, there is a comfort in knowing that others understand the fear, anger and sorrow that we are experiencing in this nightmare.

We also have children and telling them the reality of the situation is one of the hardest conversations I have had to have. It feels like I have catapulted them into adulthood prematurely when they should have many years ahead being carefree and not worrying that I might die sooner than expected because of a random chance.

I have to believe that we will get through this, at some stage emerge albeit in a different form from what we expected from life and lead a happy life, however most days I just want to pause time or crawl under a stone and hide.

Hoping tomorrow is a better day for all.

Hello Wee Me,  my wife also ran marathons and triathlons and went to the gym 4/5 a week. Until recently she was still going but chemo has curtailed that, my fitness record is not as impressive.

Slightly random question and I am not sure if I have imagined this but do you know about there being a correlation with glioblastoma and being bi or trilingual- my wife speaks English and two other languages fluently and can get by in another one. Not that it makes a difference to anything but just curious.

The random crying is quite a revelation, it can stop conversations at 20 paces. I think I am past caring now but the issue of the “tell me what I can do to help” makes me see red. I am becoming very adept at saying a lasagne would be fantastic! I have stepped outside of my comfort zone.

I am trying to make time for me in this but mostly just feel utterly exhausted and like I could sleep for months if given the chance although the insomnia torpedoes that mostly.

thank you for the links, most helpful.

HI

oh hopefully once she gets through the chemo she gets back to her running. My husband is convinced that's what's kept him going, He could be right.

The language question is a good one and I wish I knew the answer. I believe Chemo can cause some confusion which could lead to short term language issues. In our situation, my husband's tumour was in the area of the brain that controls speech/language/understanding (Broca's area).  so most of his symptoms and issues have been language related. His short term memory is all but gone but weirdly long term memory is fine. Ask to run a marathon and off he'll trot quite happily. Ask him to read this message or to go into the kitchen to make a tea and a coffee and he'll fail miserably. It's bizarre.

These early days are tough on everyone so don't beat yourself up about feeling exhausted. It's all such a huge thing for everyone to process that it takes time. Be patient with yourself.

sending you both love and light and hugs

Wee Me  xx

An update - my wife was tolerating the chemo and we had become familiar to the routine that went with it. At the last chemo session we walked out of the hospital and I knew we would not be back. My wife died at home as she had wanted having deteriorated very quickly we were out and about on Wednesday and she died on Saturday evening. Her mobility became very compromised in a short space of time, stairs were a struggle, her confusion had increased and her previous voracious appetite disappeared overnight. She lost a lot of weight overnight, her body had reached the end.

She had the peaceful death that you hear about and we didn’t have to transfer to a hospice or hospital, we are now in a fog that doesn’t feel real and then feels far too real.

I wish you all well with the time ahead, it is the path we didn’t ask to be on and the destruction it causes is devastating. For now we take each day at a time, there is no other option.

So sorry to hear this but really glad the end was peaceful. Thoughts and best wishes with you and the children as you try to rebuild your lives.

Oh WarmScarf I am so sorry to hear this. Glad that it was quick and peaceful but still so traumatic. My heart breaks for you. 

I'm dreading that part and I can see it coming....

It is still early days, but please remember that this community is still here to support you. The helpline number is below should you need to reach out to them.

There's a lot of support material on the main website if and when you feel ready to take a look. Here's the link.Coping with bereavement | Macmillan Cancer Support

There's also Bereaved spouses and partners forum - Macmillan Online Community again for if and when you feel ready.

For now, I'm sending you love and light and hugs. 

Wee Me xx

Dear Warmscarf,

I am so sorry for the loss of your young wife, and the suffering you all had these last months. It's been so rushed and traumatic. I hope your family and friends can support. My husband died 3 months ago from glioblastoma and I find this site really helpful to accompany me in my grief and understanding of what happened. This cancer strikes healthy athletic people. It's difficult to comprehend.

May your wife rest in peace 

So sorry for your loss, a very cruel illness and at such a young age.

please take comfort that your wife is peacefully looking over you daily, cherish your memories and don’t let gbm rob you of your happy memories. Your wife will be pain free and flying high . Just take one day at a time and try to rest and eat well .

All the best , please keep us updated on how you are coping/ feeling.