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Making the most of it

User
Posted 18 Mar 2019 at 20:35
Teacups, my heart goes out to you. It really is a thin veneer isn’t it, and it doesn’t take much for the brittle edges to crumble. I hope H is still comfortable, it sounds like you are in peaceful surroundings. Sending you hugs. The sun has been streaming in through N’s window, I’d love for him to want to come outside with me for a bit to feel it on our faces, I wish it wasn’t so cold, he turned down the offer to swaddle him in blankets and wheel the bed out through the patio doors!
N has improved a little, no more chronic nausea and the tiredness has abated enough for him not to fall asleep mid sentence. Another blood test today to see if that is an improvement in the sodium or just him adjusting to the new low level, results tomorrow. A quiet day yesterday with the kids visiting and enjoying a game of cards together and today N and I have watched a 30 min programme on his kindle, the first time we’ve watched tv since January. These really are “making the most of it” moments, the kids are ok, as well as can be expected, finding it hard to focus but managing the necessities. I try to keep a consistency with expectations but everything is negotiable, Son came in his lunch hour today but daughter may not see N until Wednesday so I’m thinking maybe an early morning coffee with him tomorrow for 5 minutes and then a longer stay on Wednesday, or going to collect her from school early if he’s having a good day and squeezing in a visit then. After Friday’s horrible deterioration I think they need to see him as often as possible but this is really hard to balance with school.
“Discombobulated” love it, I think that is an apt description. I’m going with your “badly expressed concern” and trying to convince myself of this every time someone asks if I’m ok, which is often. Perhaps my resting face has taken on a permanently miserable/worried look, it’s exhausting keeping up N’s spirits, and the children’s and the visitors….
I do feel like I have lost the connection I had and I didn’t previously give a second thought really to how I was perceived by others at the hospice but your right, I am questioning everything that I took for granted before, staying late, going early, sleeping over, making food, coffees, washing, shaving, cleaning. I spoke to my mum and sister in law today about it and they both thought it was probably concern but agreed that it was a funny way to express it, they also suggested that maybe it was the staff who felt that I was somehow saying that they weren’t doing it right. I suppose that’s a possibility but not likely. Anyway, as long as N is happy there and he is, then it doesn’t really matter, I’ll just get on with it and think more carefully before I do stuff.
Wishing everyone a quiet night.xx
User
Posted 19 Mar 2019 at 22:04

Ladies, I meant to update my thread but I have forgotten what I called it, I'll take a look later. I wanted to update you both on our excellent oncology appointment yesterday. We hadn't had any results since John started the enza but knew that it was working just by the reduction in symptoms. Well, its great news, PSA has dropped to 12! All his other cancer markers are much better, HB is 97 so not fab and that's dropped as have many of his RBC, WBC markers so the underlying issues remain but what a turn around from the extremely poorly man I had here over the Xmas hols. Given at the right time this drug is pretty awesome, but being honest, my Gleason 10 husband is a very unusual person in relation to his cancer. It is pretty rare to have someone with the top Gleason score and spread to bones and lymph on diagnosis  (spine, pelvis, ribs and leg, head of femur), to go more than eight years and still soldier on. I don't know why but whatever it is it's extraordinary stuff. When I think that the doctor told me that had I brought him in a week earlier, given the state he was in, they would have denied him enza on the basis that he was too ill to have it, I can only thank providence for that delay.


I know you won't mind my happy post in all the sorrow, I just wanted to say that Enza can be amazing, I hope N can benefit from it if he is well enough to try it Kentish. Who knows if it might just help.


My love to you both tonight.


Devonmaid xxx

User
Posted 19 Mar 2019 at 23:04

That's fabulous news DM,  I'm so glad for you and John. Long may it last.xxx


N is looking at the "horse pills" with a suspicious eye. He did ask if he swallowed them or if they went up the b*m they're so big!


Sodium only up to 118, another radiotherapy session cancelled but N happy enough between naps. Can't ask for more than that at the moment. X

User
Posted 20 Mar 2019 at 00:55
Fantastic news Devonmaid - was it the Enza or the new baby that gave him such a boost?

Kentish, hoping for another peaceful uneventful day for you tomorrow x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Mar 2019 at 01:37

What wonderful news, Devonmaid.  Gladdened my heart.  To have that time when he is feeling better, and then to have the results confirming  is wonderful.


And Kentish, happy enough between naps is indeed a good thing.  Long may it continue.


We are still here and amazed we are.  But family have managed to fly in in time now.  I think this extra time has been a gift, really, and allowed me some breathing space.  


Love to you all.

User
Posted 20 Mar 2019 at 06:59

great news devonmaid xx

User
Posted 21 Mar 2019 at 12:05

In our spirit of keeping things real, I felt that I should post our latest sad news that we lost H today.  At the moment feeling numb, and sad.  But grateful for the time we had, and all those years when we did 'make the most of it', as Kentish's thread is titled.  Grateful too, that the struggle is over, and that he was not in pain.  


Love to all of you.

User
Posted 21 Mar 2019 at 12:19

So sad to hear your news but no more suffering for your husband now. Thinking of you and your family. 


You have been amazing through all of this.


Take care xx

User
Posted 21 Mar 2019 at 12:26

Teacups, so sorry to hear your news. I have tears in my eyes and hope that you find some strength in having your family close now at this difficult time.


Phil

User
Posted 21 Mar 2019 at 12:43

So sorry Teacups.   I'll be thinking of you xx

User
Posted 21 Mar 2019 at 13:08
So sorry. Sending warmth and strength x

If life gives you lemons , then make lemonade
User
Posted 21 Mar 2019 at 13:30

So sorry to hear this saddest of news Teacups. 


 


Ann

User
Posted 21 Mar 2019 at 13:45

Feel sure you will receive the much-needed support from your family & friends at this extremely sad and difficult time for you ... the kind of support that you are so generous with when you make your sincere Posts helping others on this worthwhile site. Our thoughts are with you.

User
Posted 21 Mar 2019 at 15:13
Teacups So sorry
Hugs
User
Posted 21 Mar 2019 at 15:37
Hi Teacups

So sorry to hear the news.

X

Pete
User
Posted 21 Mar 2019 at 15:52

So sorry to hear this Teacups. Thinking of you.

Ido4

User
Posted 21 Mar 2019 at 16:23

Oh Teacups


The most dreaded of moments has come and my deepest sympathy goes to you for all that you both have endured and for the journey you will now embark upon without your beloved man. We have discussed how it can be a relief in the immediate aftermath, no more pain and confusion, thank heavens for that. It's over but also, it's over and now you have to endure. Please accept my condolences, I am thinking of you and hoping you can find peace, you did everything you could, you were a wonderful support and an amazing wife. No one could ask for more from their beloved. I hope that time will blunt the edges of what you have been through but that's not for now. My love and heartfelt sympathy go out to you.


With my love across the airwaves, I hope you can feel it


Devonmaid xxxxx

User
Posted 21 Mar 2019 at 19:08
So sad when you click on to the latest conversation, and a "sorry" message appears.

My condolences for your loss.

dave
Do all you can to help yourself, then make the best of your time. :-)
User
Posted 21 Mar 2019 at 19:30
Dear Teacups,

My heartfelt sympathy goes out to you. I'm so glad H wasn't in pain, it's what we all want isn't it, to have someone go gently and peacefully. Lean on others my friend, sometimes it's hard to let go for fear of never being able to get up.
I wish you peace in the coming days, and I wanted to say that your grief is welcome here if you need to share it.
Xxx
User
Posted 21 Mar 2019 at 20:09

Teacups


So sorry to hear the sad news of your loss. Please accept my sincere condolences. Take care of yourself.


Thanks Chris

 
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