Struggling with my husband's recent diagnosis of a brain tumour

There is a lady on here here name is Wee me she posted on here and seems to be going thru the same thing. maybe send her a message, she might be a good sounding board as she will know what treatments  and such like., but  check out her post and never think your alone in all this. there is always someone on the end of a phone that will listen. I'm always on the phone to our local hospice seeking advice  for one thing or another especially now the hospitals are locking down. 

HI Ozz76. I am so sorry to hear you're on this horrible journey too. I really feel for you. As Mines.a.coffee.. says my husband is going through a similar experience. MRI and CT scans discovered a golfball sized glioblastoma in the Brocas area of his brain on 26 Aug. He had a seizure on the 7 Sept which was beyond scary - cue blue light amubulance ride to the hospital 30 miles away- then had an awake craniotomy on 9 Sept to de-bulk the tumour. He's just completed 6 weeks of radiotherapy/oral chemo in combination. 

I'll not sugar coat this - life has changed forever around here. He's not the same person he was and never will be again. Speech can be tricky at times as he forgets words, uses the wrong word or just says something that makes little sense whatsoever. HIs eyesight has been compromised too by the tumour - he describes it as trying to look through wet polythene. He can no longer read properly either but has added an app available from RNIB to his laptop so that it read out loud to him. 

I understand the loneliness and the feeling trapped ....you could also add useless and guilty and lost in there too. I've been through every emotion in the book I reckon and some of them all at once. There will be some days you feel ok and others where you just want to curl up into a ball and cry....and that's ok. I've been assured  by the family support worker from the local hospice that that's all perfectly normal. 

I too want to protect my other half but he's a stubborn independent bugger! It's hard but you have to be led by your husband to an extent as to how much TLC he needs/wants. My husband is a fitness freak so despite having developed multiple small blood clots in his lungs post -surgery, he still insists on going for long walks on his own and the occasional 5 km run. My heart's in my mouth every time he leaves the house but he's an adult and hates to be treated like an invalid. 

Not sure I've said anything that's of any use here to you. If you di nothing else, ask questions of the medical team, find out who you can go to for emotional support etc. I'd encourage you to get a Power of Attorney sorted out sooner rather than later if it's not something you have in place already. (We're still working at putting that in place- more from a welfare/health angle than the financial aspect although both are important.) Make sure you look after yourself. Take time for you. Talk to your friends and family. They won't likely know what to say to you but they'll be there for you. And reach out on here. I've had a lot of comfort from this group over the last few weeks.

It's a rough road we're all facing but you're not alone here.

love n hugs

x

Thankyou for your reply 

Aww thankyou.very informative and I can relate to everything you have said.Martin is stubborn and never sits down so just going by his lead?

He has a nap during day as not sleeping well on a night.Hoping to start treatment 17th December his tumour is non operable due to positioning of it.its just been such a whirlwind of events but like he says we have to find beauty and happiness in life and just enjoy everyday. 

How is your husband? 

Hi Ozz76  he's as stubborn and pig headed as ever. Before all this started he was a fitness freak - a marathon runner., a cyclist, a rower.  Now that his chemo radiation is finished he's determined to get back to doing some of these things and is worrying the life out of me in the process. But, what's the point in stopping him? He's so determined to hold onto his independence for as long as he can, he's actually shutting out the folk who care and are trying to help as best we can. It's difficult and frustrating but I have to go with what he wants.

If he's exercised as much as he can during the day, he ends up tired and the brain too is tired. The fallout out of that is that he's more confused language wise so conversation becomes a bit of a guessing game. Good job we all like charades!

hang in there

xx

Oh we good at charades too now lol!! Hes very good a swear words though? They come out loud and clear but at least we can laugh with him. His symptoms have worsened last few days and has started dragging his right leg without even noticing. He had his MRI yesterday and goes tomorrow for mask fitting and ct planning.Doctor has upped his steroids to see if that helps so will see what happens. Keep your chin up we are all in this together even though everyone has a different story to tell.You have helped me in a way and I thank you for that.you feel like u r alone and nobody else knows how you feeling until I've come on here and can relate to alot of what you r saying.

Take care.you know where I am if u need a chat xx

HI Ozz76 Have fun with the mask fitting. Not sure if your local hospital will offer the same thing but at the end of the six weeks my husband was allowed to bring his home. He did have it on briefly in the car on the way home that day and got very odd looks from the car beside us at traffic lights! It's now sitting in our conservatory with a light inside it. It's kind of creepy.... 

xx

 Not sure if we could keep Martin's bless him but you never know hes always been mad about how stuffs made so will probably have it in bits on dining room table. Xx