Hi, my father has had a diagnosis for about 7 months. He's in his 80s and has had 2 resections, but the tumour doesn't look to be removable totally. He also can't have chemotherapy for other medical reasons and radio therapy is being held back as possibly the next step when repeated resections are insufficient.
It looks like this is not going to be curable, but will be a matter of extending life. However, that quality of life is so diminished. He is mentally capable and until recently was able to drive himself and be able to care for himself fully. Now he can't drive and is only able to walk short distances.
The biggest problem is he is suffering from huge fatigue, which seems to worsen after each resection. This is partly down to broken sleep as he must go to the toilet every couple of hours at best, but he also has other health issues which may be contributing.
The mental impact of the likely outcome, loss of independence & mobility, as well as the fatigue, is in some ways the most difficult thing to deal with, for him and for us. We know he has every reason to be down and we have no right to expect him to be different. But it is so hard to see him like this and it almost feels like we are dismissive of his difficulties if we try to cheer him up. We try to get him out and about, but this is limited to occasional trips out as he often doesn't feel up to it. We visit daily, but yet he isn't happy to have a care plan set up with outside visitors.
We are trying to support him, but there seems so little we can do.
There probably isn't any silver bullet for this, but just wondered if anyone might want to share their thoughts.
