Hi everyone
conscious its been a over a week since I shared where we were at. Life's been a complete emotional rollercoaster.
So to backtrack to a week past on Saturday when G was re-admitted to the hospice, they upped his Keppra to the max, upped the steroids and had him on oxygen for a few hours to stabilise things. He was still having seizures but they were smaller. His moods were all over the place and there was no reasoning with him. He had a temper tantrum over nothing on the Sunday afternoon, stormed out of the room in an effort to escape and set the fire alarm off as he tried to leave via the fire door.
By the Monday (7th Aug) the doctors had determined there were two possible causes for the current symptoms - A - blood clot in his lungs or B - the tumour is compromising the brain stem or C- a bit of both. They said they weren't going to do any further investigation- fair enough. And also didn't want to treat the clot with blood thinners in case it wasn't a clot. Fair enough. The doctor sat the kids and I down in a quiet space on the Monday morning and said he may only have days or a few weeks. It was a day of difficult conversations as you can only imagine but on the Tuesday we brought G home again.
He kept threatening to run but we managed to convince him to pedal on the garage on his bike instead. At least in there we know where he is and the neighbours aren't scraping him up off the pavement. On Friday my daughter noticed his left leg looked swollen... cue call to the hospice nurse, emergency appointment at the DVT clinic at the local hospital and yes, you've guessed it- ultrasound has revealed a DVT. Again, no plan to treat it. In fact it was my daughter who took him to that appointment as he refused to go with me. Her answer was perfect- she took him for ice cream afterwards.
Yesterday he decided he was going to try to run again. My nerves are shot with this! He set off and after an hour there was no sign of him coming back so my son went out in the car to look for him. He found him quite happily running slowly along the main road so left him to it. Stubborn B****r ran 6 miles. I give up! He also disappeared off out for a walk in the afternoon and walked another 5 plus miles. I give up trying to reason with him.
Mentally/cognitively are where things are really quite poor. His short term memory has been pretty much gone for a long while but now he quickly forgets what's going on, can't understand why his leg is swollen and tender and generally doesn't seem to grasp that this is serious. As I've said before his symptoms are more like dementia and we are struggling to cope with this as a family but we'll get there,
His behaviour is erratic....last night he binned his socks instead of putting them in the wash.
So now all we can do is watch and wait and try to keep him safe.... you really couldn't write this one!
love n hug to you all Stay strong.
Wee Me xx
Wow! You're so right you literally couldn't make this up! I think this should be made into a film WeeMe. How can someone be so physically fit (ignoring the DVT for a moment) yet apparently so near the end. It's amazing and heartbreaking all at the same time.
I really can't imagine the stress this is putting you through. I get stressed when my wife put things in the oven and forgets about them but that's child's play compared to disappearing for epic solo runs whilst on death's door.
Thanks for updating us and always know that we're here whenever you need someone to listen 
Chris xx
we're hanging in there and taking it all a day at a time. That's all we can do.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI
I really am at a loss as how to describe our current situation as in many ways it sounds unbelievable!
G is still being as stubborn as ever. He ran 3km yesterday (slowly), walked another 6 km then pedalled in the garage for 2 hours in the afternoon. His left leg that has the DVT looks as though it should belong to an elephant. I've no idea how he's actually getting his foot in his shoes. I joked earlier that he'll be in his welly boots by the end of the week as they are the only things wide enough.
Last week's revelation was steroid induced diabetes. Who knew that there was such a thing! the hospice nurse arranged for the district/community nurse to come out yesterday to do a blood sugar check but because he'd been pedalling for the 2 hrs before she arrived that skewed the result so we are no further forward there.
Trying to have a conversation with him these days is a challenge. He's very confused and quite irrational at times. As I've said many times, this is more like dementia than cancer in many ways. He can be quite nasty too which hurts but, back to that elephant analogy, I've developed quite a thick skin. Our daughter hasn't and she was really upset last week by some of the things he said to her. I could have throttled him!
The doctor from the hospice is due out to see us later in the week. Last week, the nurse who was in commented that she saw a big difference in him in the space of a week and added that he wasn't too far away from the point where she would be advising he goes back into the hospice. The doctor hasn't seen him for 3 weeks so we'll see what she says.
We'll see what delights this week brings. I really don't know what else this GBM can throw at us.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
