Boyfriend brain tumour prognosis

Hi Vicks83, I'm so sorry to see the prognosis. We do have people living longer than the prognosis, but there's no certainty with this horrible disease. I hardly know what to say. I am 70 so my husband and I have had our lives and the thought of his prognosis of only 5 more years is hard enough. At least I have our lives together to be grateful for. Is he well at the moment? Have you had any therapy/counselling to help you through? If not, it's well worth contacting your GP or finding some online counselling. I'm sure it's been mentioned before, but the helpline, 0808 808 0000, is manned by caring experts who could help with advice. There's also this page which has a lot of information about carers and emotions.

Hugs,

Hi Vicks83. I am fairly new around here and still getting my own head around my husband's glioblastoma diagnosis but I can empathise with your situation. Nothing could have prepared me for the diagnosis we got last month. Shocked doesn't begin to cover it. I never knew it was possible to experience so many emotions, sometimes all at once. I never knew it was possible to shed so mnay tears. We've been told 12-15 months assuming the raddiotherapy/chemo combination works. No matter how long a timeframe that's given, it never feels long enough.

Hang in there. Treasure every moment and make the most of the time you have together

hugs

x

Hi Wee Me, I'm new to this too.  My husband collapsed, convulsing, on the 2nd October. Prior to that he was fit & well, apart from having a heart attack 5 years ago, & his prostate removed in February this year, making a complete recovery from both, & we were hoping for many more than the 41 years we've been married. Everything changed on the 2nd October. He was put in an induced coma & I was called in to be asked if he would want reviving if he didn't wake up naturally,  oh & he had a brain tumour! I wouldn't be able to see him after he was transferred to a specialist head trauma unit due to the COVID restrictions here in Merseyside. Thankfully he woke up & could converse with the doctors, but our lives had changed for ever. He was diagnosed with a GBM & a prognosis of 18-24 months. The bulk of the tumour was removed 4 weeks ago & he is now waiting to start radiotherapy & chemo. He came home a rather different man. He had no patience with me, & his manner could be rather aggressive, not like him, but has improved since his steroid dose was reduced considerably. He doesn't talk about how he feels at all, or the proposed treatment. As far as I know he hasn't read any of the literature given to him. He is an intelligent man, & had a successful career in the law. I have been feeling anxious, tearful, helpless, totally inadequate & feeling as if in a daze ever since. Our son & his family live locally, but we can't even have a hug & they're not supposed to visit at all due to COVID,  I feel in need of practical support, but know it's virtually impossible due to COVID. I have spoken to my GP, so he's aware. Reading your reply here tells me you know only too well what this is like & at least now I know that what we're experiencing is the same as others, & we're not alone, although with COVID restrictions it often does feel that way. Sorry to go on at length, but think I'm still in a state of shock about it all as you say you've been too. 

HI Crosbybantam I really feel for you and I understand where you are coming from. Watching them locked inside themselves, obviously angry and scared and frustrated is so hard to cope with. My better half like your husband was/is an intelligent man. He had a high fying career in IT and is a fitness fanatic so for this tumour to rob him of his ability to always effectively communicate, understand and see clearly is beyond cruel. At times I feel he is deliberately locking himself away from me but then he'll verbally lash out and although you know in your heart he doesn't mean it, those words still hurt. I've seen a wee glimmer of hope today though as he visited the Maggie's centre that's nearest us and he's said it helped and he'll go back. I have no idea who he spoke to about what as he can't/won't tell me but at least its something he's drawn comfort from. As for us, at least we have this forum to reach out and communicate and share our feelings with.

Hang in there. Stay strong. Big hugs xx

Thank you everyone who replied. I am so sorry to hear your stories and it is so difficult. I am having counselling already because I lost my dad 6 months ago and I have started talking to her about this stuff now too. I kind of forgot for a while about my boyfriend and his future because I was so lost on my grief. Now I’ve woken up a bit, this news about my boyfriend feels like a terrible shock, again. 
take care all.

Hello again, thank you so much for getting back to me. To know there are others facing similar difficulties & to know you are there & understand is hugely reassuring. These things are beyond cruel, as you say, but I was interested to hear your better half has visited a Maggie's centre. Something similar may be a way forward for us too. I want to thank you, & everyone who's taken the time to read this. I can tell you it is very much appreciated. 

Thanks for the hugs, & I send same to you. Xx

Hello everyone, 

I can’t believe it’s been over two years since I wrote that last post. In all honesty, we have been getting on with life which I suppose is the whole point. I don’t know what made me come back to the forum - other than that we are waiting  for the most recent scan results. 
It is weird how your mind plays tricks on you - I see that two years ago, my (now husband!) had a prognosis of 7 more years - but I was telling someone only the other day that it was 15 years. I guess I am still living in a level of denial  about it. 
I hope everyone is coping ok and I wonders whether anyone had any thoughts on when his tumour might reoccur. I know it is down to the individual/type/grade etc etc but I find the waiting for his tumour to return just intolerable. When he has a clear scan, everyone around us is almost congratulatory - and all I can think is ‘it wont be next time’. 
I continue to procrastinate about having fertility treatment so we can have a baby. I will be 40 in March and I still haven’t got my act together about it.
I also feel really bad that I feel so resentful that it has impacted on my own life so much - sometimes I feel like I made the wrong decision to stay and I feel terrible even writing that down here. 
I find it so hard living in both worlds at the same time - the world where we live and get on with life and the world where  his tumour might/has come back. I feel like I swing from one to the other and most of the time, I also feel bad that I feel bad or frightened  at all - because he isn’t unwell at the moment and he has been well for such a long time now, I can’t really imagine him being unwell again. Sometimes I think he will live forever and the hospital must have made a mistake. Sometimes I think people look at us and they are thinking ‘why hasn’t he died yet’. it really is all very confusing. 
much love to all. 
V

So weird but reassuring to read your reply two years on. I'm at the beginning of the journey at the moment so I can't imagine what I will write in two years. At this time I can't bear the hope,  because each appointment we go to seems to get worse.  Reading your two years on has made me realise there is a bit of hope when for a short while.