Hi Jobo

oh so much of what you say resonates with me. 

G ran throughout his GBM journey. He was a marathon runner pre-diagnosis and even the dr said that his fitness level helped him deal with his GBM. He ran two marathons in 2022 having been diagnosed originally in Sept 2020. His short term memory was  awful and he had no recollection of running half of the 2022 London marathon.  If it helps your husband to run, let him. His body will soon tell him when its time to ease up.

The eating- that's the joy of steroids. I gave up trying to stop letting G eat "crap". It was a battle not worth the fight. Let him eat what he wants. If you want to control it slightly, don't actually buy the things he's snacking on. I did try that on occasions.

The personality changes sadly seem to be an all too common part of the GBM journey and I totally understand where you are coming from with the struggles there. It's not easy to live with a person when you don't know which version you are getting from hour to hour or day to day. It's hard on everyone involved but try to distance yourself from it, especially if he says something hurtful. It's the GBM talking and not the "real" him. 

As wife's/carer's to a large extent sadly we are helpless here to say or do anything that helps the situation. We are tied into this uninvited emotional rollercoaster ride to the bitter end but you will find the strength to get through it. I know it doesn't feel like it at times but you will make it.  By the final couple of months of G's journey even the hospice nurse commented that I was living with a stranger. I was- a very broken stranger- but the man I fell in love with was still in there somewhere. 

One step at a time. One day at a time here, Jobo. Please don't be too hard on yourself here. This journey takes it toll so please make sure you are looking after yourself. I understand that work helps. I worked right up until the last week of G's journey. Work brings a slice of normality to far from normal days- I get it.

Please reach out here anytime. It's a safe and supportive space and we're here for you. We get it. You're not alone.

Sending you a huge virtual hug and lots of strength. 

love n hugs

Wee Me xx

Hi wee me thank you so much for your reply. It makes me feel much better and that 'm not going crazy! I agree about just letting him get on with things, whatever helps him to get through it really  

I think what's so hard is seeing him be himself and I think itll all be ok and then out of nowhere its totally the opposite.  It really is a rollercoaster. 

We are still doing things together and I'm planning lots but it's that uncertainty that's the hardest. 

Hope you're doing ok too. Lots of love x

Oh Jobo - I could be writing this too! It’s so hard and I used that phrase only the other day ‘I feel like I’m walking on egg shells’ .. my husband is so similar (not the running part though - that’s me!) …. he snaps at our two boys so much and he always used to be so laid back. We picked them up the other day from a friends as we had the hospital and so they went there after school - they got in the car and he didn’t speak to them at all .. I was asking them about school, the football tournament our youngest had been on .. and my husband just sat looking at his phone. It makes me so sad. I’m working too but not at home, and I have left him some important jobs to do as he needs to call Pensions and also speak to his union … every day I get home, and he hasn’t done it - it’s so frustrating but deep down I know it’s not his fault. I have applied for an LPA but this hasn’t  been completed yet. I may need to take some time off to sit and do these things with him. I feel your pain Jobo …. I wish there was a magic wand but it’s just blimmin’ hard and heart breaking … 

Sending love from one wife/mum to another x x 

Hi sunflower yes it's so heartbreaking.  I feel the pain for my son so much , he's dealing with it ok though and sometimes better than me when he's telling me it's not dad's fault. 

I got an lpa early on but it took ages, we also tried to sort the bank accounts etc to make things easier.  My husband doesn't do any of the paperwork or admin at all, he struggles with the right words and gets frustrated so I do all of that.  

I feel like sometimes I'm becoming hardened to things just to be able to get through it & it feels like I'm a single mum already.  

My husband is similar to yours, he takes himself off to the bedroom with his headphones on and doesn't really want to be part of things. I think he struggles with more than 1 person in the room and when the big kids are here (25&23) he can't cope with the chaos particularly if they are all together chatting etc. 

Sending hugs to you too xx