My husband(56YRS) was diagnosed with Gbm frontal lobe tumour in May last year, he had the tumour debulked, radiotheraapy and is having chemo therapy.Although physically he is quite able at the moment I feel his personality has changed significantly and I feel quite alone in that the husband I knew is no longer here .
Hi slh,
Welcome to the group and so sorry to hear about your husband. I cared for my wife until she passed away in February. She had a GBM in her right frontal lobe. Below is the info I give everyone when they first post on the forum but first I just wanted to respond to your post specifically.
In my wife's case her cognition was affected and there were many tasks she could no longer do. She had real issues with time and place confusing her. I would describe it as being like a moderate case of dementia. I do know from having now read dozens of stories on here that some people personality changes in much more difficult ways. I read stories where the person becomes aggressive and rude for no reason which must be incredibly difficult and again not unlike some examples of dementia.
I know exactly what you mean about feeling like you've lost a part of him already. I felt exactly like that because sadly that is what's happened. Our relationship changed immediately from being a life partnership to me being a carer and her a patient which is so tough to accept. Especially as the one person you would normally confide in when times are tough can't support you anymore. My heart really goes out to you. We do know here just how you feel.
Sorry that's not much help but if you get nothing else from this forum please know you're not alone.
Chris
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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
Hi I totally relate to this. My husbands personality has changed dramatically. It's quite literally minute by minute and I have no idea what I'm going to get. He was a really warm gentle and calm person but now it's the opposite. He can go from normal to being mean, snappy and more recently he has incredible paranoia and insecurity. To the point I can't leave the house without him commenting or telling me to just do whatever I like in a very mean way. I keep telling myself it's not him it's the tumour but I do find myself getting annoyed and very upset. His short term memory is terrible so I'm convinced he doesn't even remember most of what he's said.
I was meant to go to the theatre tonight with a friend but I cancelled as he was so awful about me going out which then made me feel guilty 
I hardly recognise him these days, there are moments when he's himself but they are getting fewer and fewer.
Hes also very emotional and cries a lot and keeps telling me it'll be over soon as he will be dead in 3 months even though no one has ever said this! It's beyond upsetting.
Sending a huge hug, I hsve no idea what to advise as I'm struggling with that too but you're definitely not alone with the personality changes
Love xx
HI Slh
a warm welcome to the online community. So sorry to hear about all you and your husband are going through. Life's too cruel at times.
You can read the gist of my story in my bio (I'll not bore you here). G's personality changed almost from day one. He had a major seizure less than two weeks after his diagnosis, two days before his surgery, and to be honest was never the same person after that. There were glimmers of the "real" G throughout his journey but as the journey progressed they became fewer and fewer. Steroids also have a dreadful impact on personality - they made him so bad tempered! I kept telling myself that it wasn't the real G i was living with and tried to rationalise things by saying that the tumour/s were causing the changes. The "real" G was still in there somewhere.
From my experience with G, these tumours are doubly cruel as they do leave you with someone that is more akin to a dementia sufferer than a cancer patient and that's incredibly hard to cope with. We'd been together for 35 years, married for 28 of those, and the day he asked me what my name was tore me apart on a whole new level.
A couple of weeks before he passed away, the local community hospice nurse was in for her weekly visit. As she was leaving she asked if I was ok. (He was very difficult to live with by that point) I replied with my standard "I'm ok as far as I can tell." She answered "You're done, aren't you?" I nodded. She then added "And you're living with a total stranger?" With tears on my cheeks I agreed with her. By then he was a very broken stranger but I still clung onto the hope that the real G was still inside.
I'm not big on advice and to be fair Chris has already given you most of it in his reply but take each day as it comes and accept the person it brings with it. Know in your heart that the real person is still in there and that the version you have each day is just a bit broken and try not to take anything he says or does to heart. Easier said than done, I know.
A GBM journey is an emotional rollercoaster ride for all involved but please know that you are not alone. This is a safe and supportive space so please reach out here anytime. There's always someone about to listen as you've seen, someone who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone. We've got you.
Sending you a huge virtual hug and lots of strength.
Love n hugs
Wee Me xx
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