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Original poster

DH49 glioblastoma - shock & disbelief

121 replies

balkanscot · 15/05/2022 20:01

My DH49 has been diagnosed with glioblastoma stage 4 last Wednesday. Op is tomorrow but with GBM stage 4 it’s not curative as it almost always reoccurs. It’s such a shitty bastard cancer as it virtually gives you no hope whatsoever. Prognosis is usually 12-18 months. I can’t believe we went from “It’s probably a stroke, let’s go to A&E to get it checked to GBM diagnosis. He is losing the use of his left arm, his left lip is drooping considerably, he has difficulty forming words. He also has seizures - facial ones (left side of his face seizing uncontrollably for a few minutes). He is on Keppra & steroids at the moment.

How could this bastarding brain tumour be so fecking deadly and seem to come out of the blue? No indications that anything was wrong. Then 26 April happened (when we went to A&E he had slight difficulty forming words, drooling and left side of his mouth drooping slightly). Now he is shuffling around in his dressing gown like an old man. 😥

We have DS10 who is already showing signs of grief - anger, disobedience, defiance. He himself had a brain op almost 4 years ago to treat his epilepsy. I have also had cancer twice (breast cancer, then recurrence which was still considered primary as no spread beyond lymph nodes) and have BRCA2 gene.

It feels like I am living my life beyond a filter. Lovely sunshine, happy people smiling & enjoying life all around, and I feel like I am the only one suffocating.

Just wanted to vent. Glioblastoma, what an utter fecker! 😡

OP posts:
FrontRowSeat · 15/05/2022 20:07

I’m so sorry. My mum had exactly the same so I know how shit it is. Sounds like you and your family have had a hell of a shitty few years. Sorry I have no advice but sending un-mumsnetty hugs 💐

OrangeBlossom28 · 15/05/2022 20:11

Huge sympathies to you. The same happened to my dad in 2014. Went from nothing wrong, presenting as a possible unusual stroke to GBM4 in a few hours. Nothing anyone says will make things any better but we're here to listen.

MVision · 15/05/2022 20:13

Hi there
yes it’s an awful cancer - a person close to me had it. Make sure you get support as a family as this will be a lot to deal with and especially with your cancer diagnoses as well. If your husband feels up to it (and he might well not) see if you can record some videos for the children before he looses speech. I am sorry you are having to deal with all this.

MichelleScarn · 15/05/2022 20:13

It is a bastard op, this is a good place to come And rant and swear.

Strikemepink · 15/05/2022 20:14

Balkanscot I am so sorry to hear about your DH, you and your family have been through so much already and now this. It’s so unfair. I don’t have any experience with what you are going through but I wish you, your son and your husband lots of love.

BeyondMyWits · 15/05/2022 20:14

So sorry xx

my Dad also had this show very suddenly - he rolled his car when away in the middle of a different country... so many complications.

You have my sympathy. It is a shitty hand to be dealt.

kitcat15 · 15/05/2022 20:16

💐 I’m sorry this is happening for you all

tkwal · 15/05/2022 20:16

I'm truly sorry to read your post. It must feel as though your life as you had planned it is being stolen from you, especially after everything else you have already had to deal with. I hope the hospital will put you in touch with MacMillan as they are really good at offering practical and emotional support. I hope you and your family manage to find a way to comfort and support one another. You all have my very best wishes. 💐

thefirstmrsrochester · 15/05/2022 20:16

I am so very sorry, cancer is an absolute bastard, an indiscriminate bastard, there is nothing fair about this. I’ll hold your hand whilst you scream at the heavens.

WindyKnickers · 15/05/2022 20:18

It's a fucking awful disease. My sibling died from brain tumours at age 41. How can life be so shit.

BattenbergdowntheHatches · 15/05/2022 20:19

This reply has been withdrawn

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RandomMess · 15/05/2022 20:19
Flowers
FlowersFlowersEverywhere · 15/05/2022 20:22

Sending unMumsnetty hugs. It’s shocking how it can be stage 4 when the day before they were fine. Was the same for my Dad. It’s good they can operate though. That wasn’t an option for my Dad.

greenmoney · 15/05/2022 20:22

So angry on your behalf. Cancer is such a bastard.

ChiswickFlo · 15/05/2022 20:22

Oh, this is so shit.
I'm so sorry op x

ChiswickFlo · 15/05/2022 20:23

Oh, this is so shit.
I'm so sorry op x

LetitiaLeghorn · 15/05/2022 20:23

I'm so sorry. How awful. You've been through so much, it must feel almost impossible to put one foot in front of the other. There's nothing I can say but I send the three of you love and hope the time you have together can be spent making happy memories.

Firstshoes · 15/05/2022 20:25

I am so so sorry for what you are all going through xxxx

LIZS · 15/05/2022 20:29

I'm so sorry. A friend lost her husband a year ago to this snd like your dh thought it was initially a stroke. Flowers

TheVolturi · 15/05/2022 20:42

So sorry op FlowersFlowers

cloudjumper · 15/05/2022 20:45

So so sorry. Yes, it's utter shit, couldn't agree more. My dad was diagnosed with it, too. I feel your pain. Sending lots of hugs Flowers

bloodywhitecat · 15/05/2022 20:45

It's a bastard diagnosis to receive, sending love, un-mumsnetty hugs and a listening ear so you can rant 'til kingdom come Flowers

picklemewalnuts · 15/05/2022 20:50

I'm so sorry, OP, you've had an unfair share!

We lost Dad to this, but he was at least a decent age, unlike your husband. Dad responded really well to the operation- he recovered very quickly and enjoyed life after his operation.

I'm so sorry.

TheVanguardSix · 15/05/2022 20:50

Damn it to hell, OP. You have my entire vault of sympathy/empathy.
I watched my uncle struggle with the same cancer as your DH.
My brother died last year from pancreatic cancer.
Out of 7 siblings, all of my mum's have had various cancers, including mum.
Glioblastoma is such an 'Oh! Look who showed up uninvited and out the fucking blue' cancer.
It and pancreatic are the biggest assholes of the cancer 'family' (all of them are bastards but those two are just utter dickheads).
You have my love, my handhold, my sympathy.
There are no answers and there's not a whole lot of meaning to this life when we're faced with the prospect of prematurely losing our most beloved people. But the time we have with the people we love is all that matters. And that will comfort you... not this minute but down the road.
I wish you all of the love and strength as you face the road ahead.
There are decent meds out there to help your DH control symptoms and discomfort, which is a relief for all of you.
Your poor, poor lad. Only 10. I really feel for you. My nephew just turned 9 a couple of weeks after his dad passed. One year later, just last month actually, we marked my nephew's 10th birthday and he's really ok... he struggles, it's been a hell of a bad year for him, but he still has the ability to grab onto life with both hands and enjoy it. Children are pretty remarkable that way. Still, I feel so much for your little boy. He is loved and he has your love. This will carry him. This will carry all of you.
I'll add that my nephew wathched his mum struggle with illness for 4 years. She recovered and dad, my brother, was then diagnosed with cancer. So I can understand how hard this is for you all and how worried you are for your little boy.

Rebelmcstreettuff · 15/05/2022 20:51

My brother died at 49 with a story very similar to your DH's OP
It really is such a cruel cancer with limited treatment.
My every sympathy to you and your son.I lost my father as a young teen,only advice it to let him talk about his feelings and hold them both tight.
🙏