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.

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.

It's been a rough week in many ways. Excellent transfer to the hospice on Monday, conversation with the doctors on Tuesday not so favourable. N told them his plan, go to radiotherapy, get on his feet and come home again. They were encouraging that that is what we'll all work towards. I talked to them afterwards about how realistic were these goals, not to take away hope from N but for me to gauge how much encouragement I give, to get a balance between him feeling hopeful but not under pressure to do whatever. I hope that makes sense.

We are going to have another review on Tuesday as they said they needed to have him here for a little while to get a better picture.

Thursday morning was awful, he asked to go home and they set the ball rolling straight away. He was so miserable, tired from so many nights of broken sleep and the dawning realisation that he was unlikely to start the Enzo or go for radiotherapy. He was supposed to go Thursday morning to the planning scan but decided Wednesday evening he was too tired and wanted a rest from interventions. It took a couple of hours and eventually a conversation with the social worker and nurse to adjust the sleeping tablets before he changed his mind and cancelled going home. I would never say no but I am terrified of having him home and getting back on the merry-go-round of 999 and long stays in hospital.

2 nights of good sleep and he's a little happier.

Nausea has been a problem and they have adjusted the antisickness drugs to combat this but the downside is he is a bit more spaced out.

It's lovely to be able to go back and forth and for the kids to pop in and out, it's a more "normal" existence for the family but this time it feels different. The only "hope" I have is that he can be medicated to a discomfort free place and stay there.

I think I've cried more than ever this week Teacups, thinking of you and all the others who have reached this place.xxxx

Tom

Kentish

Thanks for the update, it feels justifiably sad as you relate the reality of this stage for some men. On the plus side the Hospice is easier on the family and the visiting more ”normal”. I get the kids point of view with the formal counselling, its often easier to be open with people who flit in and out but who you sort of know.   

I would also be scared of taking him home, i don’t know how it would be possible to cope. I totally understand the need to be at N’s side, this is a time to do what you and your children want to do and forget everything and everyone else. Your family has to come first.

A week drinking juice makes you feel wonderful, its easy to do, no food smells so not hard. Lots of yoga and walking, fresh air and sleep, sounding nice yet? Nearly always a celeb or two there (posh or what?). It revitalises me and helps me get through the stress of this illness. Only holiday you come back looking great and ten pounds lighter from!

Hugs and love

Devonmaid xxx 

Oh, Kentish, how hard it is.  Sending hugs.

Your kids are stars, and obviously a credit to you and N.