Husband has glioblastoma

Hello,

I'm nearly 3yrs along this horrendous journey and I've realised that I'm the best judge of my husband's condition so if you are worried and the symptoms are new I would contact your Macmillan nurse and they can advise.

My husband has never had seizures so I can't advise on that,is he on medication for those?

Hope you find some reassurance.

Hi

I am so sorry to here about your husband's symptoms and the worry it is causing you. I was diagnosed late Dec 2024 after being found unconscious on my kitchen floor late on Xmas eve which the medics said was a likely seizure.

I have had about 6 awake seizures since where my right leg shakes/tremors for around 4/5 mins. I was surprised to learn the medics classed these tremors as seizures.

I was left disabled in my right leg after the resection to my anterior parietal lobe. I'd never had a seizure since my adjuvant chemo ended Oct 2025 but I had another two just last week. I rang the hospital to see if my 3mth scan next month should be be brought forward but they were not overly concerned.

I am happy to share a video (off forum) of what my leg tremors look like if you feel that would help you but I suspect everyones journey here is different. Probably the best person for you to chat to would be my wife Claire if you feel that might help but be warned she can talk the hind legs off a donkey. 

Kindest Regards 

HI Heartbroke

a warm welcome to the community. So sorry to hear about all that's going on. Life's too cruel for words sometimes.

I supported my late husband through the three plus years of his GBM journey. He had issues with focal seizures for the last few months of his journey. I would encourage you to report the changes that you are seeing to the medical team ahead of the appointment. if nothing else it will bring you a little peace of mind, I worked to a three strikes and I'd call it out rule - if i saw the same issue worrying me three times then I would report it. 

This is a safe and supportive space  as you've already seen so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

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 though I'm sending you a huge virtual hug and lots of strength.

love n hugs 

Wee Me xxx

Hi .thankyou for replying its good to chat to someone who understands how difficult it is to be the wife/partner of someone going through this horrendous journey .my husband is on anti siezures tablets as his first siezure in april 2024 was originally diagnosed as epilepsy .unfortunately it turns out that it was the tumor that caused this and took another 5 month to get a proper diagnosis after a visit to A and E with a slight droop to his left side of his face warrented a scan .tumor diagnosed 3 inch in size .i wasnt sure what questions Mcmillain could advise on so thankyou for clearing up my confusion .

Thankyou for your lovely reply its nice to hear im not alone as most days it feels like im going through this on my own floundering and everything is on my shoulders.i think the hardest part is not knowing when and if things need reporting or if it as i said b4 ."a new normal".He now needs a walking stick to help get up the stairs which he didnt need before his last awake siezure and he isnt eating or drinking much even though they upped his steroids last week.I think maybe ringing McMillain one day could be a good start and thankyou for making me realise im not alone in this horrible journey with my husband 

Hi .thankyou for your kind reply im sorry to hear you are on this horrible journey and wish you well.its lovely to realise im not alone.this horrible illness make me reclusive as i am with my husband at home most of the day now so i dont get to talk much to anyone else so loneliness is a huge problem for me .my husband had a slight tremor in his hands for years but since he had his awake siezure just over a week ago it has increased alot .At first his left leg gave way he couldnt stand up lasted about 20 mins and he was not well over weekend .drowsy and not really with us .Hospital said it was most likely a siezure and upped his steroids .now both legs and hands  have a tremor but as he can stop them when he realises even for a couple of minuits they wont change his medication .he has difficulty cutting food up on his plate carrying items and needs to drink from a water bottle as cups spill over .he uses a walking stick to help get up the stairs which b4 the siezure was not needed.I have no idea if its a progression of the the disease or if he will regain his strength etc .I wasnt sure if to McMillain concerning my worries but from reading some replies i thimk that it cud b a good idea from now on .good luck on your journey and it would be nice to chat if your wife wants to .

Hi, I have messaged you with my wife's contact details but not sure if the message function is currently working. I will check again tomorrow. Take Care.

I know how you are feeling, I am in the same position, my husband was also diagnosed last September with Glioblastoma and also had an operation within  2 weeks of diagnosis followed by radiotherapy and chemotherapy; which he did handle very well.  But since Christmas he now seems to have declined mentally with short term memory now non existent and his mental capacity is not good almost you could say verging on dementia .  He struggles to follow instructions or keep up with conversations, gets very anxious, disorientated and confused.  The past couple of weeks he now has sundown syndrome where the hours between 12:00 midnight and 5:00 am he is unable to sleep, wandering around the house, which is now very difficult to cope with, with lack of sleep coping emotionally with caring and still trying to work from home.   Has anyone else had these symptoms of dementia which seems to have appeared suddenly , is this the normal and how worse will this get if  anyone has any advise on how to cope.

Hi .sorry to hear about your husband and wish you both good luck for the future. my husband has no vertually short term memory now which was made worse last month after a siezure at home.his memory was bad after the operation but now its vertually gone.he too has lost alot of ability .my father has dementia and i see lots of similarities which scare the heck out of me .for the first time the other night he got up bout half 1 and went downstairs stayed up watching telly all morning .he said he didnt realise wot time it was.mostly hes in bed early which makes my life very lonely .every day is a new learning day now but its the same for him as he zones out alot and stares at the telly not watching it but looking into space at it .We dont have conversations no more as he doesnt carry conversations on no more .he struggles also following instructions and seems to forget wot he was doing within minuits.he is on 6 month chemo now which is causing more worries and making me feel like im a paranoid parent now .not a wife sadly .the love and affection disappeared the day the tumor appeared .good luck i hope things get a bit better for you both and you get some help .i explain everything to the consultant and ring the specialist nurse if things get worrying which calms my nerves alot and help me not panic too much .good luck 

Caregiver,

I sadly can relate to all of that, before my husband's hospital stay the sundowning syndromes were the worse thing to deal with,hallucinations as well.

They gave him halodyl in hospital and he now has this at home morning and night which has made things much calmer, maybe that is something you can mention to your care team.

Take care of yourself x