Terminal Brain Cancer

Hi Mumf

a warm welcome to the group. Sorry to hear about all that you've been through and all that you're facing. 

My personal experience lies in supporting my husband through his terminal brain cancer journey. (We'll avoid the name as you suggest but I suspect its a similar one) He was 50 when he was diagnosed in Sept 2020, otherwise fit and healthy and a marathon runner. HIs symptoms were and are cognitive as his original tumour was in the area that controls speech and understanding. He too had surgery to debulk the tumour then had 6 weeks of oral chemo/radiotherapy. At that point we were told he had 12-15 months.

Over the past 28 plus months things have stayed pretty stable. I've also come to realise that timelines are best guestimates based on published averages and that no one is average. Everyone is unique!  

These tumours impact people in so many different ways that it is hard to offer advice as such. I do think that a positive attitude, a sense of humour (however dark) and a good fitness regime do help here from what I've observed with my husband. In the past year he's run 2 marathons- he set a PB of 3:15:28 in Manchester last April then ran London in 3:33:34 and was raging that he never got a PB! He's been on a skiing holiday, he's been on a city break to Paris with me, he's been away with friends and he even managed to get a role as an extra in series 8 of Outlander.  Basically, he's lived the life he has wanted to live to be best of his ability - timescales be damned.

I appreciate though that not everyone is in his situation and if his tumour had caused physical symptoms then the story would be entirely different. 

This group is a safe and supportive space so I am confident that others will be along shortly to share their stories and experiences and words of wisdom. There's always someone around here to listen who gets it, someone to hold your hand and offer a virtual hug when its needed. You're not alone.

I guess what I am also trying to say is be led by how you feel and do what you want to do (within reason!) Throughout the 6 weeks of treatment he coped really well with it. By week 4 he was suffering from fatigue but he was still up and dressed every day. The fatigue passed about a month after the treatment cycle ended.

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.

There's also a wealth of information on the main website - here's the link for when you feel ready to check it out Diagnosis | Macmillan Cancer Support

For now though I'm sending you a huge virtual hug. Stay positive. Focus on the facts that are relevant to you. Stay away from Dr Google's tales - he's a scary dude! 

love n hugs

Wee Me xx

1. Hi there so sorry to hear that.  Its a very similar situation to my husband,  he had surgery in November and we are just waiting for treatment to start end of January.  He's 58 and been fit and healthy all his life,  his consultant said brain tumours are random and you're just unlucky to get one as they aren't linked to anything else. Bit of an understatement I think! We are just taking things a day at a time.  He's feeling OK in himself which is amazing really so we are trying to do things before he starts his treatment. It's  a horrible disease and so hard to process, my thoughts are with you  xx

Thanks for what is ,to my wife and I , a positive response. It’s made her a lot more positive,so thank you. I am a man with a positive and cheerful attitude anyway. Even now. 

Sounds like we are both in the same boat! We are a very similar age and similar situation.I too feel ok. In an odd way ,we feel happier that it’s not just us. IE ,not our fault if that sounds right? Thanks for your reply. It reall y helps. 

Absolutely, I totally understand that.  We felt exactly the same but the consultant reassured us several times that there was nothing we could have done differently to prevent this.  We are also very positive people but wow this stuff really tests you doesn't it! I honestly believe a positive attitude really helps with a number of things. My husband was so very angry- he's spent his life staying fit and healthy then this happens.  We talked about it and said that all that fitness will absolutely mean he's going into this strong and able to tackle whatever he needs to.  I hope you and your wife are ok - always here to talk x 

I know what is coming,but I am keeping my positive attitude. A happy attitude . Nor do I waste time. The family cannot understand my “tomorrow is another day, don’t worry” way of thinking. I don’t clutter my mind. Does that make sense? 

my wife and I are ok. It’s taking her time to accept it. She gets it though,as she has had breast cancer! Anyhow, thanks for your response. A cup of tea now .x