Glioblastoma and Follicular Lymphoma

Hi CoffeeCoffeeCoffee

a warm welcome to the group.

So sorry to hear about all you and your husband are going through. It's beyond cruel. Personally I've not heard of anyone suffering from both. Hopefully someone else within this community might have and be able to offer you some words of wisdom.

My own husband was diagnosed with glioblastoma in Sept 2020 so I can relate to an extent with what you are going through. He's a fitness freak (marathon runner) and his diagnosis was a total bolt out of the blue. 

This group is a really safe space and a supportive community so please reach out anytime. There's always someone around here who gets it, someone to listen and to offer that virtual hug when its needed too.

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.

There are another couple of groups that you might wish to explore further - Glioblastoma multiforme brain tumour - Macmillan Online Community and Carers only forum - Macmillan Online Community. I've drawn a lot of support from both over the months.

For now though I'm sending you a huge virtual hug. Please remember to take care of yourself too here. It's a rollercoaster ride of emotions and you need to take time for yourself too to recharge the batteries.

love n hugs

Wee Me xx

My husband has stage 4 Glioblastoma (October 21), my had dad died of the same cancer when i was young, not going to lie that felt pretty unlucky too!

As far as I understand, it's just one of those things, no lifestyle factors, no genetics, just pure dumb unluck!

I do try thinking about the other side, like thank god I live in a country where an operation won't bankrupt us, that we don't need to refinance our home for chemotherapy - It's cold comfort though.

Hi I’m new to this group and was just reading your post. If you don’t mind me asking how is your husband. My husband has surgery coming up for a tumour in the left temporal lobe. He is 47 and we’re so scared 

Hi Sroses, husband is doing very well, he had an awake craniotomy, followed by radiotherapy and chemotherapy. He came out with minimal deficits after the surgery, and has worked hard on recovery, fully meds compliant. He's even gone back to work.

Honestly didn't think it would be possible, it is scary, very very scary BUT age is on your side, younger people (even just the wrong side of forty) do seem to tolerate the treatment better.

There are alot of variables, but remembering how bad he was pre-surgery (managed 2 words beginning with the letter t), he has come back to being my husband, took a good long while but we've had so much more good time. 

Everyone comes through it differently, but I'm more than happy to talk anything through.

Thankyou so much for replying this is so good to hear I’m going crazy out of my mind. We have children ages 13 and 11 and it’s breaking my heart thinking about them losing their daddy and my loving husband. I made the mistake of googling for answers which I know was wrong but I’m desperate to hear stories of positivity. Where in the brain was affected if that’s ok for me to ask x

It's absolutely fine, it's left parietal lobe, so left hand side above his ear, he sports an impressive scar there, just where his language and processing skills are.

There is no empathy in a search engine result, and the percentages are heartbreaking for worst case scenario BUT the percentages are not your husband, when you dig into the stats older people fair alot worse than younger.

It is a massive surreal shock when you first get the news, but the waves of shock do pass through over the weeks. We spoke to the Ruth strauss foundation about how to talk to the kids about the diagnosis and treatment, which helped alot too.

My husbands is left temporal lobe. I’m trying to be positive for my husband and children and he is so strong and he’s worried about me more than himself. 

we’ve told the kids as we didn’t want it to be a shock when he goes in for his operation (fingers crossed) 

I just feel helpless and a wreck. You’re right it is an absolute shock because the doctor put him on anti depressants saying he was depressed and stressed. Than for it to turn out to be this it’s unbearable.

Thankyou so much for your words of hope, I’m just praying for the best outcome x 

Small steps, and lots of self care, and keep talking with your husband, check in with each other and be honest about your ups and downs. Wishing you strength for the coming weeks, amd check in whenever you need 

Thankyou so much xx