Mums Future

HI Little Else

a warm welcome to the online community. So sorry to hear about all that's been going on. SO much for you to cope with. Life's too cruel.

I supported my late husband through the 3 years or so of his glioblastoma journey (the gist of it is in my bio) and I can assure you at the end it was peaceful. He knew nothing about those last few days. G kept physically very well until about 8-10 weeks before he passed away. The last week or so he was beyond difficult, I'll not lie. His issues were more cognitive than physical throughout. He had developed a DVT in mid August 2023 (we have no idea how as he was physically active) and had issues with focal seizures from Aug through to the end at the end of October. I was warned from day one that a seizure would be the more likely cause of death then the tumour itself. In the end I'm not sure if it was a seizure, a stroke or the DVT blowing but it all changed very quickly.  

We had one very traumatic day with him at home on the Sunday. The local hospice couldn't admit him until the Monday but the local community nurses and carers were a Godsend on the Sunday. He was transferred to the hospice on the Monday afternoon but was barely conscious. The medication through the syringe driver that had been fitted on the Sunday saw to that. There were intermittent periods of agitation on Monday to Wednesday but the local hospice nurses took care of everything that was needed to keep him calm. From late Wednesday through to the Friday afternoon when he slipped away peacefully all was calm. 

Our oncologist had passed us off to the local palliative care team some 8 months earlier and while that seemed like a dramatic step it was the best thing that happened. The local team swooped in and took care of us all as family for those 8 months. Weekly calls/visits as needed and most importantly to me a number I could call 24 hrs a day and know that there was someone on the end of that line who would be there shortly to help.

I'll not lie, a GBM journey is a rough one but in our case it definitely ended peacefully and the way G had hoped that it would. 

This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you. 

You might also want to explore Glioblastoma multiforme brain tumour forum | Macmillan Online Community I drew a lot of support from that group during G's journey as well as fromCancer carers forum | Macmillan Online Community.

Please also make sure you take time to care for your wee self here too. Taking "me time" isn't selfish. It's essential to help you recharge your own wee batteries. Don't underestimate the physical, emotional and mental toll this journey is taking.

For now though I'm sending you a huge virtual hug and lots of strength.

love n hugs 

Wee Me xx 

I am so sorry you have lost your dad. My mum died last Saturday from a gliobastoma. The steroids turned her into a different person which was frightening to see. Like you we had to fight to get anything.for mum and even at the end she wasn't given morphine in her driver as it was deemed she wasn't in enough pain. It took her a week to die after she fell into a coma. Watching a parent/loved one slowly fade away is the worst thing I have ever experienced in my life. The care company they NHS finally agreed mum needed were amazing and kind and I can't thank them enough for treating her with compassion. 

I hope you get time with your mum, hug her.as often as you can as I so dearly wish I could hug my mum. 

Hugs to you and your family. I'm not religious but I send positive healing thoughts to you at this difficult heartbreaking time for you x

Little Else, what a terrible year, I’m so sorry you’ve had to go through that ️

if it helps, I do think of my Dad’s death from a GBM as a good death. It took six months from diagnosis to death, and he was barely the same person toward the end, but at least he wasn’t afraid or in pain. The Marie Curie and Macmillan nurses were amazing, visiting every day. Home care is so much easier than hospital care for a terminal patient - I hope you can also find a way for your mum to pass painlessly.

I was diagnosed with a grade 4 astrocytoma two years ago and am doing well, but I know my time is limited. The time spent with my dad (and my dear brother who died one year later) makes me understand that sometimes death can be kind. I hope with all my heart that your mum has a similar experience - sending a warm hug xxx

and hope for the best for your sister too

Thank you so much for the helpful information. Prior to dad's death I did a lot of research on what the experience might be like including watching videos of end of line patients whose families had very bravely shared those moments. It sounds somewhat grim but I was prepared as it was possible to be (not very) for what was to come. Mum is already very different, she's very frightened but seeing your husband deteriorate so badly must have been so damaging for her.

Thanks again and much love. 

Allison

X

Thanks, and sorry you've lost your mum. It seems hospitals start with the lowest possible dosages of medicines to combat pain. I'm strongly of the view that needs to change. If you know someone had weeks what do adverse affects really matter? Just take the pain away. He was lucky he had a family to fight for him, what about the poor souls who don't?

That's why hospices are so precious. 

Dad was on Fentanyl and Oxycodone and when they were administered correctly he was very peaceful and comfortable. Sadly they were rarely administered correctly.

Much love to you. 

Xx

So sorry for all you are facing, and it's amazing to see you have a feeling of hope.

Much love to you and thanks for such helpful information. 

X