DH49 glioblastoma - shock & disbelief

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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! 😡

So so sorry, op, for all of you. Cancer is just a complete shit show and this one sounds a right shocking bastard. Been through different but with similar fall out. Cruise was useful to my family; camsh less so in helping my kids.

www.teamverrico.org/who-we-are/

If you need a second opinion or help with paying for counseling this charity can help. I came across this charity after my partner died from his brain tumor and I joined WAY ( Widowed and Young).

Sending hugs xx

@BellaVita my entire heart goes out to you and your family.

My DS is 21 and this month has been told his blood cancer is in remission however he is wracked with guilt that he is here when others he met on the ward are facing much harder times ahead.

Cancer is so horribly indiscriminate, a bastard which doesn’t care who it touches.

Love to all going through this xxx

A friend of ours was also diagnosed out of the blue with the same thing. Similar symptoms too. His is too far in the brain to operate, but they're giving him radio therapy and chemo. The cancer is growing so fast I'm not sure he's going to make it to the end of the treatment.
He's deteriorated so fast - it's like he has Alzheimer's. He's 61.

@BellaVita as a Mum I cannot imagine how your world has been turned upside down. I send you and your darling son my best wishes and really hope that his treatment is not to arduous and everything crossed that it is a success 💐💐💐X

I am so sorry OP. I lost my hubby when he was 50yo, so my heart sank when I read your post.

Pls google all the info on CBD, THC and cancer. I don't think they can use PDT on brain cancers, but ask, it is an effective treatment.

Sending you a big hug xxx

I can’t say anything that will help or offer any advice but I am sending you an absolutely huge unMumsnetty hug. I’m so sorry x

I’m so sorry. My mums friend lost her son, who I grew up with, to this horrible cancer. He was in his early 40s. I wish I could say something clever or comforting hmm but it’s just all so bloody unfair.

So sorry to read this op.

Hi OP. So sorry to read this. Please look up Dave Bolton on Facebook. He was diagnosed with this 7(I think) years ago and defied all the odds and is pretty much clear of it now. He followed a keto diet etc. he’s started a charity called Ahead of the Game Foundation. He helped Tom Parker through his fight with this shitty disease. I’ll try and attach a link to the fb page. Wishing you and your family all the best xx
Ahead of the game foundation

@BellaVita I am so sorry! 😢 25 years old! It’s randomness of it all that’s so unbearably hard to comprehend. It sounds as though you are making those invaluable memories which we are not. Physically & mentally DH is not in a position to travel. He spends most of his time in bed.

DH was hospitalised again at the start of August, it was touch and go when he arrived at A&E. Has been back at home for 10 days now, on a new regime of drugs around the clock (well. It feels that way). Has finished 1st cycle of chemo, due to start the second one on 12th Sept.

He just doesn’t care what he says, I am usually target of his verbal escapades, I can’t do anything right, I have to answer his random questions/do random tasks there and then (otherwise he gets so stroppy), get confused about days/dates… Walks with a stick now, he has fallen outside twice in a week but still insists he can walk by himself when out… low tolerance for everyday noise, everyday conversations. If I am unable to find something/do something his stock response is “I don’t care that you can’t do it/don’t know how to do it, just do it.” Too many distressing snippets like these to mention.

Was adamant I need to see a doctor so that he prescribed me anti depressants because “you can’t cope anymore”. Wants our 10 year old son to go on anti depressants as well. He has lost the plot.

I am finding it immensely difficult to cope but I do cope because I have no choice. For our son’s sake. I am broken and am all out of sympathy for DH. Awful to say but that’s how I feel. He has been replaced by a scared, angry, bitter, petty, confused creature that I don’t like.

i go to all the counselling but my life is still just one massive shitshow. Cancer is a bastard but brain cancer takes the biscuit. Vile beyond belief.

Thank you all for listening to me and sharing your experiences. It has only been 4 months since life as we knew ceased to exist but it feels like a lifetime. Like this is the only life we have ever lived.

@Sugaredlump he looked Dave Bolton up but that was early on in his diagnosis. 😢 Now he just doesn’t care anymore. He has been utterly broken by his latest hospital stay.

I am so, so sorry. My husband was also diagnosed with a brain tumour after a seizure at home. Prior to that he had absolutely no symptoms whatsoever. Brain tumour research receives a shockingly low amount of funding and I don’t know why that is.

It’s so incredibly unfair and cruel.

Oh love. I don’t know what to say but wanted you to know that people are here to listen.

Can you wrestle an hour or two for yourself tomorrow to walk and breathe in the air, or sit alone for a while? You sound so squashed by all this.

Also - it’s okay to argue with him and dislike him at times. I know I felt wretched and guilty a lot when my husband was incredibly difficult to live with and I found myself getting angry with him. Be kind to yourself.

Oh my gosh. So sorry OP to read your update. I don’t have any words.

Thinking of you at this horrible time xx.

Oh god, OP. I am so sorry. That's an awful lot of shit life is throwing at you. I hope you have lots of good support around you.

My heart goes out to all of you affected by this awful disease. Today (31st Aug) is actually the 10 year anniversary of my mum's death to this.
We were lucky I suppose, in that hers was originally operable & we got another nearly 4 years with her before complications meant there was no way forward.
It is a truly awful disease, & one that receives so little funding. It's meant to be so rare but I know of several people who have had it.
Nothing I can say will help ease the pain but you are not alone

So sorry to read this. My MIL was diagnosed with this in 2021 aged 87. She’d outlived bowel cancer, not had covid but had this.

Too late, frail and advanced for operations etc. But she did have decent quality of life for 4-5 weeks and was only really ill for a week before she passed away peacefully.

Terrible for you, my heart goes out to you.

Not sure what is available where you live but contacting hospice at home well before it was really needed was most useful and comforting to both us and my MIL.

Whilst they were primarily there for her they helped everyone. Started as a daily visit/chat into 4 visits/day and the odd overnight.

Is it worth you contacting them on his behalf? They may have some advice for you. Sending you a hug xx

I'm so sorry. You have had more than your share of bad breaks. There is not much one can say but feel free to vent here. Terribly sorry.

I'm so sorry. Remember everything you're feeling is valid. You're also grieving the life you had pre-diagnosis and juggling anticipatory grief. If you can, try to schedule in some duvet days. Easy food to eat, watch movies with DS. My parent was seriously ill most of last year, I had to dial back every expectation because it was all so exhausting.

I am extending some Aussie empathy to you and everyone else here whose loved ones are suffering from brain cancers or have left us as a result. My mum had secondary brain cancers and while she was always a difficult person, she became increasingly aggressive as a result of personality changes and the steroids. I was the brunt of it and was severely traumatized afterwards, even though I knew logically why she was so hostile. I hope you are getting time to have some therapy or even some sleep. Our medical system does not cover in-home care, so I paid for a few nights of it in Mum’s last weeks as exhaustion and trauma were winning out. Please speak to your nursing support about setting that up sooner rather than later so that you have the energy you need to be the wife and mum you need to be. Xxx