Making the most of it

Oh dear Kentish, words aren't my thing at the best of times, and they are certainly failing me now.  Such hard news to hear for you both.  Glad at least that the onco will circumvent the processes and get him onto Enzo. 

N's plan about waiting in hospital until a bed is available at the hospice sound like the best plan - security and stability for both of you.  

Sending love to all of you.

You are an inspiration to all of us struggling with this crap disease.

Keep strong but also look after yourself.

Love and thoughts to you and your family

Debby

Hi Kentish

I'm just back from our little soujourn in the Forest of Dean and didn't log on while away as we needed a break. I'm absolutely shocked and heartbroken to read this news. N must have a terrible form of this disease and his suffering has been unbearable to witness, even from afar. To feel that he is better off in hospital (for what it's worth I agree) shows how bad he feels and his acknowlegement of how things really are. I suppose at least he is being given a chance on Enza, its worked quickly for John but I have to say that his legs are back to filling up and the pain has returned (though intermittent) so I'm a concerned about how long it will last. Our onco appointment for Monday has been canxelled due to lack of staff so we haven't actually seen any results yet. However, it has made a difference and that's the point and hopefully that will also do something for N. From anecdotal evidence Cabazitaxel isn't so harsh as Doxataxel, so hoping that will be a possibility for you both. It's all borrowed time isn't it? That's why I am taking every opportunity to get out with the family, though even in the Forest, John wasn't able to come out for any of the walks, which felt sad. 

Teacups, your situation sounds so sad but you sound so stable and competent, I really feel for you though because i suspect that life isn’t much fun for you, my heart goes out to you both.   I don’t know your full situation (will read profile today), I guess on the plus side you have your man home, though time for a new, softer mattress that suits by the sound of it!

Kentish, I am thinking of you and hoping for a good response to Enza, John seemed to improve within a week plus upping his patches to 25ml, made all the difference to his pain.

my love to you both

Devonmaid xxxx

N was moved to the hospice this morning, I didn't actually believe it until he was safely tucked up in his bed by the window and I had unpacked his bags. For once it was a smooth transition, hurrah.

He is feeling pretty awful, nauseous, anxious and his bowels are on the go again. The hospice will look at how they can best manage this over the next few days to make him more comfortable. Onco came through with a radiotherapy appointment for lower spine mets, N was positive he wants this so we are off to hospital B for planning scan Thursday morning and zapping next Wednesday. In the usual poor communication , I read that N has spinal mets on his discharge letter, nobody has told us this, onco only told us about liver and lungs, its always not quite enough info isn't it.

Enzo has also been prescribed and I can collect this tomorrow, however, Hospice docs feel like it may have a more negative impact than any benefit and will try and explain this to N tomorrow without robbing hope. Ultimately it will be N's decision whether he takes it or not.

N wants to come home and he managed to voice how scared he was that this might not happen, a very nice social worker in the hospice helped him get this said, he's not one to put these kind of thoughts into words and it was tortuous watching him struggle with saying them but he was so relieved afterwards it was worth it.

Hoping tomorrow brings better symptom control.

I found it impossible to say goodbye to the awesome staff in the hospital, I just could not keep my lip from wobbling and I was afraid I would break into loud sobs if I tried. They were so lovely to both of us I felt awful but I'm sure they understood how near the edge I was. N kept asking if I was ok! I was worried that if he saw how upset I was he would feel even more depressed about going to the hospice. I have put together a hamper of treats and written a card and the Boy will deliver it to the ward on Thursday, I think many of the staff went beyond their duty for N to keep him comfortable. One of the doctors stopped on their way out to tell N it has been a pleasure to meet him and thanked him for being such a lovely patient. A few words can mean a lot sometimes, can't they.

Thanks, Phil.  Trying even to put one foot in front of the other is hard at the moment.

Kentish, have been thinking of you each day, and wondering how you and N were doing.  So, so, hope all is OK.