So sad and scared

I am so sorry :( 

It is so cruel, you have all been robbed and it is so unfair.

How is he doing in the Hospice?  

xx 

Hi Mrs Uni,

Welcome to the group and I'm just so sorry you're here. I cared for my wife who had a GBM. Like you I have children (17 and 15) and it is very difficult to accept all those future moments of happiness that she will miss.

I've put below some of the info we've passed to Paige. Given how fast he has gone downhill I have also put some links to end of life info from the website. 

Please don't ever feel the need to apologise for venting here. Many of us have been where you are now and know how lonely and painful it is so do use this space to let off steam. I know it seems impossible that anyone else could imagine the pain but we do really get it. It is unspeakably cruel.

Don't forget to look after yourself if you can. Try and get short breaks where possible to just go for a walk or have a cup of tea. I know the emotions can be exhausting as it all just feels like it's happening so fast.

My heart really goes out to you both

Chris xx 

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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.

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.

End of life advice

There is some guidance on the website about end of life which you may find helpful to read. It can be a difficult read, but unfortunately this is something which is unavoidable for so many. I think it is better to be forewarned and prepared, however just read what you are comfortable reading.

www.macmillan.org.uk/.../end-of-life

www.macmillan.org.uk/.../the-last-few-days-of-life

HI Mrs Uni

Oh my heart breaks for you and Paige. My late husband was 54 when he passed from these evil tumours in Oct 2023. It's beyond cruel to watch the journey unfold.

I don't have much to add to what Chris has already shared other than to reach out and let you know I'm here for you and I get it.  My kids were 23 and 25 when their dad passed. 

As Chris has already said, please try to take care of yourselves here too. My son and I spent 5 days in the local hospice with G who was unconscious for most of that time and even taking 10 minutes to go out and walk round the block for a breath of fresh air can make a huge difference.

There is no right or wrong way to feel right now so be gentle with yourself. Bad days/nights are allowed. Know that we are here for you both so please feel free to ask anything or vent. PM me if you'd rather do it away from the open forum.

Sending you both love and light and strength and hugs

Wee Me xxx

Hi

we didn’t know if we had made the right decision putting him in a hospice as we didn’t want him to think that we had given up on him. He thinks he’s in a hotel.. bless him.

However, he is settled and it allows us to have quality time with him as a wife and a daughter rather than his carers xxx

Oh thank you so much for your kind words.

Sometimes you just want someone to say it’s going to be ok. I’ve always been the one who takes control of things, but the fight has gone from me. 
A wise person told me to not think about the future for now, just think about the here and now and that’s what we are trying to do on an hourly basis.

My daughter said that Gods strongest soldiers have the heaviest crosses to bear…

xxx

Thank you for your kind words Chris.

I hope and pray that we just have one more day with him.

He is the love of my life and always will be

It is so hard to know what the right decision is but it sounds like you are absolutely doing the right thing for all of you. 

I’m so pleased to hear he is feeling settled. Hospice was amazing for my dad and for us, we were in your place just over a year ago, I get it xx 

You guys are on my mind a lot xx 

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I chat with Paige quite often and just wanted to send you my love. Something we realised more recently was we only ever spoke of our dads diagnosis, or prognosis, or symptoms and not the men they are/once were and there wonderful lives. I know that can be bittersweet but it really changed my perspective more recently to reminisce of all we achieved and all we did together xx

Too true Jess1204, this terrible disease slowly takes away everything, but it will never take away the wonderful memories we made as a family, the good times we had together and shared. Paige had a blanket made for her dad with loads of pictures on showing when we went on holidays and her dad holding her in his arms. I know this blanket is priceless. He has it with him all the time and we often sit on a night looking at the lovely family photos on it. We will forever hold this close in our hearts ♥️ 

Sending my love to you and your family … stay strong and cherish every moment xx