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Making the most of it

User
Posted 09 Apr 2019 at 21:28
P.s Oh and there was me being all rude about our gp, the 2 doctors who run the practice are on holiday but the 3rd doctor (the one who sent N for a PSA test in the first place) rang me yesterday and asked if she could pop by after surgery to check in on us!!!
They had received the discharge letter from the hospice (not the month I thought it would take.....) and wanted to just see how things were going. I should not assume every person/department we come across will be inefficient, humble pie eaten.
User
Posted 09 Apr 2019 at 21:30

Don't know what to say Kentish.   Just sending hugs x

User
Posted 10 Apr 2019 at 10:15

Oh, Kentish.  So pleased you've had your peaceful week at home, with family time.  Hang onto the memories of this time.  And sad to hear that N's condition means that he needs to move back to the hospice.  While there will be more support there, it won't be as peaceful.  There is no right/easy answer is there? For my part, in hindsight, I am pleased that we did move H back into hospital - I'm glad that I am not looking around me at home with memories of that time, if that makes any sense.


I wish there was something I could do other than send love and hugs to you and the family.  Just know that you are in my thoughts each day.

User
Posted 10 Apr 2019 at 12:22

Originally Posted by: Online Community Member


I wish there was something I could do other than send love and hugs to you and the family.  Just know that you are in my thoughts each day.



 


I would second that, as I am sure many other people who don't post often will. It is hard to find the right words, just know there are many people out there sending love and wishing we could do more to help.

User
Posted 10 Apr 2019 at 16:14

Just one of the many others - sending you love and wishing you comfort and strength. xx

User
Posted 10 Apr 2019 at 16:27
Kentish
Thinking of you and sending hugs.
User
Posted 10 Apr 2019 at 21:49
Thinking of you all and sending best wishes and prayers for the coming days. Hoping you will be able to get some rest and I am glad you had your peaceful time together at home.
User
Posted 10 Apr 2019 at 22:32
Thank you for your lovely thoughts. It was a smooth transition to the hospice from home this morning. We were all packed and just nattering over a sleeping N when the ambulance arrived. They treated him so gently and again we are so fortunate to only be 5 mins away.
We were unpacked in time for a spot of sweet and sour chicken from the kitchens for lunch. He only eats a tiny bit but enjoys it still, he swings between disorientated, fully conscious, very sleepy/fatigued and vacant. We watched the last episode of a TV series we had been following. That felt like a mammoth achievement to have got to the end! It's so hard to justify him being there when he is lucid and I wonder if we could have just manged a few days more. But this time is different, we had several people advising us that N would be able to be more comfortable if he returned to the hospice and we were able to do this in a calm and planned way, so different to our other experiences.
Going to try and get some sleep. It's hard to stay asleep when he's not here but I wouldn't sleep if I was with him anyway...
I had an opportunity before he came home to talk to family support about how I felt, we went through how sometimes the right thing is said at the wrong time, it's so easy to be hyper sensitive but that sometimes the professionals don't recognise this is how you are feeling in the moment.
I think I just don't want to be left with lingering regret, I need to feel in myself I did everything I could for N.
Xx
User
Posted 11 Apr 2019 at 00:13
You have and continue to do everything you can..
User
Posted 11 Apr 2019 at 21:17

Hello Kentish


i feel very sad that N has had to go back in but I guess the week at home will go down in the memory banks as a time of ease and love and homeliness and that’s a lot to be grateful for at a time like this. It feels from your post that the time is fast approaching when things are going to get worse and the advice from the professionals seems to point this way. You seem very accepting and I think from being here so long, that this is what happens. I hope I can be the same when the time comes, I’m very afraid of panic and scaring my girls. 


I think of you every day, even though I don’t always come in to the forum. You are so brave and a wonderful wife and mother. I hope your strength will carry you through.


with love


Devonmaid xxxx

User
Posted 12 Apr 2019 at 08:13
Thank you DM & Francij, I think you're right about acceptance, we've known for a while that this was the only path and what I so desperately wanted was for it to be a gently sloping one. It feels like in the last week we've managed to do this. N is as comfortable as can be, a syringe driver was put in yesterday with the secretion medication, kind of a signal of the beginning of the end in the hospice.
I'm just on my way back in afer a very sleepless night wondering whether I should stay or not. I'm taking my Jim jams with me today, I don't know whether I'd be more tired staying there or trying to sleep at home but listening for the phone.
Xx
User
Posted 12 Apr 2019 at 08:48

Thinking of you Kentish xxx

User
Posted 12 Apr 2019 at 08:51

Kentish, I have no words of wisdom to impart, only to say that you are an inspiration to all of us. Your journey has helped me so much to understand how my wife feels on our own personal journey and for that I am eternally grateful. You may not feel it but you are very good at putting your feelings down for us to understand. I hope it helps you to do that as much as it helps us.


I wish for you and your young family that the rest of this difficult journey is as peaceful as possible. Sorry, but the tears are coming again.


Sending all my love and hugs and hope you have a good day today with N.


Phil

User
Posted 12 Apr 2019 at 13:38
Thinking of you at this time. Hopefully the hospice will be able to keep him comfortable and pain free, Look after yourself.
User
Posted 12 Apr 2019 at 16:37

Thinking of you all Kentish.


 


 

Ido4

User
Posted 12 Apr 2019 at 21:22

Thinking of you all and praying that you can get some rest yourselves. I hope the children have someone they can talk to as well if they want to - a really hard time for you all and I am sending prayers.

User
Posted 12 Apr 2019 at 21:36
Saddest story I’ve read in 4 yrs on this forum , especially with you all being so young. I can only wish you love and strength as ever x
User
Posted 12 Apr 2019 at 23:00

My thoughts are with you all too. Best Wishes. xx

User
Posted 13 Apr 2019 at 12:25

My thoughts are much the same as Chris J's previous post. Thinking of you all. I feel humbled by the courage and dignity you are showing. Take care.


Ann x

User
Posted 13 Apr 2019 at 13:29
We are thinking of you all Kentish.Best wishes Geoff
 
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