Hi im new

Oh netty my heart goes out to you that is every mothers worse nightmare … 

im not in the same situation as you I just seen your post and wanted to reply to offer some support as night time is worse ..

I suppose the nurses have already been into him and assessed him and his pain relief he should not be in any pain no way as if this evil disease isn’t bad enough but to be in pain like he is is not ok .. 

is there any medicine. That can be given don’t have a number to call to say the level of pain is not right and you want him settled …

so unfair for you I hope  you have support 

sending love and strength Lisa xxxx

Hes taking oralmorph and liquid parace too but they keep offering injections and he has anxiety over needles and anxiety over being off his head like he was in 2024 when this first happened.

I do all I can...hot water bottles cool packs massagers but its not even nearly enough.

He has nurses they know his pain but until he accepts the meds there's not much more then wot they are doing that they can do. Im hoping he has a catheter soon...he obviously anxious about that too but itd take a lot of unnecessary pressure of him having to get up and down.

Night time is definitely the worse...every noise im up and checking i cant breathe cant switch off just all the tears I hold in so he doesnt see them flow

Aww with him having a phobia makes it harder then as a lot of the meds are given with needles .. you must be living on your nerves but you are doing amazing by him he’s got really good care from you … 

im saddened that there was no more treatment for him to fight this evil disease and now he’s in so much discomfort he must feel so agitated by it 

I hope they put a catheter in asap as your right he wouldn’t need to keep getting up then .. I wish I could help you I truly do xx

Thank you for replying it helps more than you know. I have family around but still feel alone its strange.

Im hoping he will have some anxiety meds through the driver and maybe then he might handle the needles? Im unsure.

Me and his dad decorated his room all lovely got a new bed he cant use hes in a recliner  im going to ask the hospice nurse about the possibility of having a hospital bed but only in his room he says he still wants privacy.

I stay up every nite just trying to think of anything I can do to help him feel comfortable to make sure he feels love 

You are so lovely you really are you must feel shattered .. 

yes that’s a good idea my mother in law had a hospital bed they delivered it within 48 hours and it was a god send …. 

i lay awake night after night too worrying my problem is with my dad who is waiting to hear what his plan is as a tumour has been found in his esophagus I just feel so bad for anyone facing this it’s just evil isn’t it .. and your lovely son who is going through this you must feel heartbroken but you must take comfort in how lovely you are and have made it so comfortable for him and so cosy and nice.. a lovely home life is so important some don’t have that :( 

message me anytime we can chat always I just wish so much I could wave a magic wand a make things better .. I always have the radio on all night for back ground noise I can’t bare silence .. is your son managing to get some sleep ? Xx

Oh im sorry ur dad and urself is facing this,  it is completely exhausting in all honesty but I wish ur dad good luck always  i also have background noise to drown out the overwhelming thinking.

My son shawn manages a little sleep but not much but im definitely going to look into a hospital bed as I feel he may rest better.

I so wish I could do more...I'd take it all in a second if I could 

Hi netty how are you xx