How does this all end?

1. We are exactly a year since diagnosis.  I cannot help with end of life as we are not there yet but I  do know that we have had some good times as well as the difficult ones. There are times when our relationship has been strengthened and I concentrate on those.

• Hi, Happy New Year to you. Unfortunately I don’t feel happy. My husband was diagnosed past September, he is 50….. I’m just struggling today, very emotional. With everyone being so happy and I feel as though my world has stopped. Thank you for replying, much appreciated x

My husband is 48 so a similar age. The sadness is always there and the unfairness of it all. Hold on to good memories and make as many new ones as you can.

• Happy New Year....take each day as it comes, live in the present & try not to think too much about how the future could be...my husband turned 50 last month and was diagnosed in September, it has turned our worlds but im trying so hard to be positive, some days are harder than others. Dont focus on the stories, none of us can predict the future, stay strong and take time out for yourself, even a few days in a different environment. Its very overwhelming i know, xmas was hard as so much pressure to be celebrating & happy, but we managed a nice xmas. Take care & be kind to yourself, you can do this, everyones stories are differentxx

Thank you xxx

Hi

Oh I wish I had the answer ...for both of us and for everyone else going through this horrendous journey...but there are no simple answers. 

Everyone going through this is unique and everyone's GBM4 impacts them differently. Yes, there are some heart breaking scary tales on here and they scare me too. My husband as you'll no doubt have read in the posts on here has been travelling this path for 28 months. When we spoke to the oncologist in Nov I asked what symptoms to watch out for and he said fatigue and loss of motor function on the right hand side. That's over and above the usual headaches, nausea and seizures.  My other half now has 4 GBM4 active areas doing whatever they are doing inside that head of his so I'm worried that the end may be closer than he realises. Denial is his key coping mechanism.

I hope the end doesn't need to be traumatic but there are no guarantees here. In an ideal world, I'd rather he died from a massive stroke or seizure while out running - at least that way I'd know he passed doing something he loved rather than being ill in a hospital or hospice. I appreciate that that may sound cold and cruel but its what he would rather too, He's said that himself.

It might be worth a call to your GP to put your mind at ease about what help is available when the time comes that you need it or speak to your CNS. I spoke to our GP a few months back and it really helped me knowing that all I need to do is call them and they will put whatever care support is needed in place for us. It was a hard call to make but it did give me some peace of mind.

There's some guidance on the main MacMillan website - here's the link If the person you care for is dying | Macmillan Cancer Support

As you've already seen from  the other responses below, this is a safe and supportive space for you. There's always someone about to listen who gets it, someone to hold your hand and offer that virtual hug when its needed. Yes- we're all scared and broken but you're not alone. We can be scared and broken together.

The helpline is also there to help get you through this journey. The number is below so please don't rule out giving them a call.

For now though focus on the moment. If there are no outward symptoms, that's great. Be led by what he wants to do but try to find some enjoyment in each day and where possible make memories. Not easy I know but all any of us can do is take this one step at a time.

Sending you a huge virtual hug and much strength. You'll get through this. We all will. 

love n hugs

Wee Me xx

Thank you x it’s so hard to live for today and not cry thinking of our future, I’m just broken right now. I’m the same as you, it sounds awful but I wish he just passes quickly, stroke etc…. The thought of my proud man, the kids dad going through a slow painful death is horrific to think about  

I can tell you that my elderly Dad's death at home from GBM4 in 2020, having been diagnosed 4 months previously and not offered any treatment whatsoever, was peaceful, gentle, calm and spiritual. Family members holding his hands, expressing their love and gratitude. No medical presence at all (although for the previous 4 nights we had had the assistance of Marie Curie carers). 

Dad slowed down and had a hospital admission 10 days before he died. He discharged himself against medical advice. Dad knew what he wanted and that was to die at home. We wanted to fulfill his last wish. It was unrelentingly hard, exhausting and emotional yet also soothing and heartwarming.

I spent hours after his diagnosis reading accounts of end of life with GBM until, with the aid of a bereavement counsellor, I realised this was wasted time. Cliche but true, if you can, focus on the time you have with your loved one, moment by moment, day by day.

With all best wishes.

Thank you for your post. It has really helped. You are right of course about reading about it too much.

Thank you so so much for sharing your story, I’m sorry you had to go through this, it’s such a horrible disease  it has given me some peace hearing your story. I just wish my husband was an elderly man and not 50 years young xx lots of love Nic