I understand your feelings!  The younger the patient the worse it is.  I’m 69 and almost into year 3 of treatment for inoperable Cholangiocarcinoma.  The only thing you can do is make each day as good as it can be.  I take great comfort that my wife, children and grandchildren will be ok.

Hi, I'm not sure what I am going to say either but I had to reply as I have recently gone through the same with my younger brother who was 67 at the time. Last March he had a funny turn and ended up in hosp thinking it was his diabetes which was very high. He spoke oddly and the team tested with the devastating news a glioblastoma in the front of his head. It was an aggressive one and prospects of only months. He listened and wanted an op to remove which he bravely went through. Within six months he quietly slipped away. During that time the family had some good times with him which has given us some fond memories. He never complained of pain and I really don't think he suffered a lot during this which gives us a little peace. All the hosp staff and hospice nurses were wonderful I can't fault them. It's been nearly a year now and think of him all the time, very sad but as I said I don't think he suffered.  All the very best...... 

Hello,

My dad was diagnosed with grade 4 gbm and was gone 5 months later. Due to his unstable condition, there was nothing the doctors could do (no treatment or surgery), so we had a real sense of hopelessness. It's terrible to be there and not being able to help. 

During the first 1-2 months after diagnosis, my mum was able to sort most of the admin stuff (like passwords, bank accounts, etc) or household with him before he started to forget them. 

So that's a very practical thing to do.

Also, anything related to memories. Going through family photos and write down anecdotes to pass down to children.  We did a bit of that. However, I was pregnant and we also talked about the future, how he would like his grandchild to call him, making the baby gift list, showing clothes. 

I remember that he loved when I showed him photos of my everyday life (work, office, travels....)

There's no right way, no easy way and it is very personal. What I found helpful is to be there with him as much as I could and being able to share my feelings with him in the end.

Take care xxx

Hi Tractorgirl, 

I'm really sorry to hear about your brother and what your family is going through. He is so young. 

Lost my Dad three weeks ago to GBM and he got 8 months from diagnosis. Do you have a good palliative care team or a contact in your local hospice? They are amazing if you want practical advice about how to support him and cool heads to talk to when things get difficult.

The night nurses and hospice team really seem to get what this cancer puts the person through and what the family needs. Is your brother talking about how he is coping? 

Also, totally obvious, but spend as much time together as possible. It's the hardest situation but it can bring out the best in your family. 

As to feeling guilty about not being emotional, it sounds like you are completely focused on what he needs and how you can help him through the next few months. That's the bravest approach you can possibly take and the tears will come. 

You are going to be exhausted but you will be proud of the care you give your brother.

Take care of yourself

C

Thanks Odea, I'm so sorry for your loss and really appreciate you taking the time to reply at what must be a hard time for you.

He has his next appointment next week so hopefully there will be some positive news. 

I'm really not sure what support is available. My brother does talk about it but he isn't interested in any of the groups as he also struggles with anxiety and depression. Currently waiting on a 'buddy' through Macmillan so fingers crossed that is good for him. 

I just wish there was something more I could do, something useful. 

We are spending more time together though which is really lovely and we will make the most of whatever time we have.

Thank you so much for your advice,. Take care of yourself, S

Thanks Siona, I really appreciate your advice.  

More than anything I want him to know how much he is loved and that he is not alone.

I guess what is the hardest thing is not knowing what is to come but hopefully as a family we will be able to give him the support and strength he needs to fight this. 

Take care x

Thanks for sharing Frogeye. I really do appreciate it.

My brother has been struggling with anxiety and depression throughout his life and about 18 months ago it seemed to get worse, affecting his sleep and his appetite. We're not sure when the cancer started to grow but I think it was around the new year when he developed a 'tic' and experienced some numbness in his hand. This became more frequent, with more extreme episodes until one day at work they thought he was having a stroke.

This was when they discovered the tumours and everything changed forever. 

Who knows what the next year will bring but it really does help to talk to people who know how it feels so I really do thank you for this.

Take care x

Thank you Bob C.

I think it's so unfair at any age but I must admit to thinking 'why him?' and 'why now?' a lot since we received the news.

I will do everything I can to make sure he has all the love and support he needs as this is the least I can do.

Stay strong Bob and keep fighting, you've got this x

Good luck S to your brother and your family. Keep your eyes peeled among the health professionals because there will be one or two who will be total godsends.