Hospice or home... this is coming close

It did feel like it went on forever but he was comfortable and I sat with him and talked to him. Our dog slept on his bed as well so he was not alone. I was a nurse myself so I was hyper aware.

I also found this helpful, it has helped other people on here as well , it gives a good overview but remember that every person is different. 

https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline

Sadly there are no hard and fast rules there either. G had nothing by mouth from Saturday night's dinner through til he passed away the following Friday afternoon. The hospice care team will guide you through the final stages when the time comes. They won't allow him to suffer.

We had a box of "just in case" drugs at home from March to October that were there for the community nurses and hospice nurses to use when they were needed. It included all sorts of drugs including painkillers, anti-sickness drugs, drugs to stop excess secretions, something to keep him calm. Most of it was in injection format. 

When the time came  that box was a Godsend as there was just enough there to keep things under control for the 24hrs before they were able to transfer G to the hospice.

I totally understand that facing the end of the journey is terrifying for all involved but for me the key was having that emergency phone number that I could call 24/7 and get help for G. Communication with your local team is key so please try to ensure you know who to call when you need them and be aware of the response times too.

One step at a time though. Take each day as it comes and see where it takes you.

You will get through this.

hang in there. You are doing an incredible job here.

love n hugs

Wee Me xx

It is comforting to know that he was comfortable. It definitely helps when your a nurse / having some nursing background.  Seeing a needle puts me to panic mood, so I will have to rely heavily on others for that. Thank you for choosing to be a nurse, you really help a lot of sick people in your line of work! 

Your right Wee Me, once he's home and I got that emergency number, and that I call, and a real person picks up, I will feel much more confident with any situation arising. I need to wait for that step as it approaches, we are not there yet. Hugs and thanks always for your responses. 

Thank you for this link. It's good reference and yes, anything that prepares us, although we will never be prepared enough, is most helpful. He is young, only turning 43 years old. 

Hi everyone, almost 2 weeks now.. He's home for a week and in good spirits.  The stress, the arrangements to bring him home were immense but worth it, seeing how comfortable he is.  While his mother is now hoping he can stay with us for months more... I am not sure if that's really best for him. He is semi-conscious, nods and shakes heads when we ask things, remembers most of us, but he never feels any pain, any discomfort, un-mobile, bed-ridden, in pads... is this really a life we want to see our loved one continue to fight for? I am not sure. Take it day by day! 

Hello again fellow friends.  There were a few changes noted in his condition the last few days, wondering if anyone else has gone through the same... ? We noticed there is bump on his head (is it further swelling?) He had racing heart, pair with high blood pressure which came and went in episodes several times a day and caused him to sweat excessively..  He was not able to open eyes to look at me or respond just in-out of sleep...  is this possibly his new "norm"? 

HI Sparkles123

Have you reported these changes to the medical team? G's head was more swollen in the last few months but no one ever really commented on it. By that stage we knew his tumour/s were huge so we put it down to that. He rarely mentioned headaches though. G was also very hot for the last few weeks too. Towards the end he was definitely feverish.

If in doubt, call any new symptoms out.

sending you love and light and hugs and lots of strength

love n hugs

Wee Me xx

Hugs. thank you love.  I did report them, we will see what they suggest. I am trying to hard to advocate for cannabis or other forms of pain meds (currently hydromorphone but doesn't seem to do the relief as much as I like to see and the family refuses to give him all the doses due to the side effects - drowsiness). What does one do?