Making the most of it

Kentish

John is on a 25mg Fentnyl patch, its made such a difference to his pain, its topped up with oramorph as and when, less needed since the Enzalutimide as that has clearly worked. Happy birthday for Monday, so sorry you are feeling low, its not surprising really, I'm ok on a dose of Sertraline, it really helps me cope. I struggled on for years then accepted medical help. We are going away for our short trip for John’s 70th birthday which happens this weekend, i still cannot believe it. My prayers have been answered even though I don’t really believe. i asked for four years and have been given more than eight. 

Teacups, my heart goes put to you, you are so brave and a womderful wife. What a band of women we are. I for one am proud of us,

love to you both and all of those suffering 

Devonmaid xxxx

Pleased to to report a much better morning.  And thank heavens, it would want to be.  Yes, nausea meds now taken.  Much more logical thought and conversations possible.  

I do take over the decision making sometimes, Kentish. Yesterday was one of those days when my strong willed man needed to feel in control.  If he was still as bad today I was going to over rule him.

DM - so good to hear the Enzo is working.  And to hear about the 70th and the weekend plans.  Have a wonderful weekend.

Love to us all.

Pain well under control but dreadful constipation as a consequence. 2 enemas and 4 satchets of movicol later and I can't change him fast enough.

Sodium meds started but awful nausea almost straight away so injectable anti sickness drugs given and all other oral meds stopped.

I had to come home as the kids are back from their ski trips and needed greeting, oh rang me from hospital and cried but didn't want me to go back. I rang the ward and asked if someone could go and sit with him for a little while. I despair that we'll never leave.

I think someone must have spoken to the mean consultant as we have seen him 3 times this week and he has been lovely to oh. A real change in approach, I'm so relieved as when I saw him come onto the ward my stomach churned, if I feel like that I wonder how oh feels about him?

Disappointed with the clinics approach to new meds, still insisting oh has to go and have a new patient meeting. It's a pointless exercise, if they do a blood test and he's well enough to take them he may improve enough to go to a clinic, without them he is only going to deteriorate further so will never go to the clinic in the first place to be able to improve.

In his current state of nausea he wouldn't take them anyway but it would be nice to have the option wouldn't it?

Kids have had a fabulous time away and have lots of stories (someone skied into a house!)to share with us. I'm going early in the morning and kids are on standby to visit when N is feeling well enough to listen.

N has decided he's having a medication holiday and will go back to restricted fluids, thoroughly fed up and now wanting to get to the hospice.

Nephrostomy removal tomorrow, if there aren't any emergencies that bump him off the list. Hoping to get out by Wednesday if the sodium level is an acceptable level.

I'm enjoying all the positives in your post.  Hope the hospice bed comes up and you can transfer smoothly.  

We are home, which is good in many ways, and worrying in others.  I need to organise more care, and that seems to harder here than it is where you are.  But at least tonight we are sleeping in beds side by side in the loungeroom, and looking out on our trees.

😄Teacups, the same goes for the fold up foam bed I am using when N comes home. I am obviously to fat for it as when I lay on the most worn part in the middle I am touching the floor!!!

I think eating is the biggest indicator of how well our oh's feel.  I never push N to eat, just suggest things he might fancy and hope he'll want something...anything. it was a Belgian bun this morning for breakfast, he remembered the hospital shop sells them, he only had a third but it's better than nothing. By this evening he had livened up and had veg hotpot and syrup sponge from the hospital canteen. The dietician has given him free reign of the canteen as well as ward meals (they are quite limited and after 4 weeks a little repetitive! ) so he has ordered chips every day😅.

A little magic this morning, urology consultant asked when N's oncolgy review is, I said in a couple of weeks and he said why can't the oncologist see N on the ward. I replied I had asked the clinic to do this and that we had to postpone every week because of one thing or another and onco had rescheduled clinic for 3 weeks time which coincides with review. Urologist went away and arranged for onco to come to the ward tomorrow to review N!! I can't quite believe it, I did ask why as I feel there is perhaps some not very good news from the ct/bone/Mri scans but he just said "we'll it makes sense doesn't it rather than N having to come back in again, he's here now and can be reviewed. It seems silly not to do it while he's here."

So onco will come to see N tomorrow, I am a little (lot) worried about it. N and I talked about the possibility of it not being good news, really difficult to face now he's feeling so much better, I'm hoping that he'll at least offer N the chance to try the Enzo regardless of the state of affairs.

I think the problem with my bed is the opposite of yours, Kentish - doesn't seem to have much give in it at all.  Another quite good day here, phew.

As the urology consultant said, it does make sense for the review to happen while you are there.  So crossing everything that it goes well.  But I bet your brain is in overdrive.