Making the most of it

User

Posted 20 Feb 2019 at 22:10

Thank you Chris, very much appreciated. Xx

Teacups, oh my lovely, that's heartbreaking. Is he taking anything for the nausea, I'm afraid I use the POA to override N on the palliative meds. I go and ask the nurse to bring his pain meds without telling him. I asked the pain management team to come and review it and would have agreed to it even if N had said no. N makes the decisions regarding intervention (nephrostomies etc) but when he is in so much pain I don't think he is able to sometimes.

N is pleased today that the increased dose has made him more comfortable but often drifts off while talking to me. Quite disconcerting to watch his eyes roll up mid sentence.

One of the nurses quipped "he goes straight to sleep when you arrive" I take it as a compliment that I make him feel safe and relaxed so he can sleep.

I do hope your oh can be made more comfortable than he is at the moment. The Almost Human consultant asked me yesterday in the corridor if I was OK as I seemed quite down (understatement!) All I could say was that it is incredibly difficult to watch someone in pain and be unable to help make it any better.

All I can do is sit with him, so I'll do that. And make coffees, very small ones now he's back on restricted fluids.

I hope today brings something better. Sending you love and hugs.xxxx

User

Posted 20 Feb 2019 at 22:40

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

User

Posted 20 Feb 2019 at 23:40

Originally Posted by: Online Community Member

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

I think we are all very proud of you.

Thanks Chris

Edited by member 20 Feb 2019 at 23:41 | Reason: Not specified

User

Posted 21 Feb 2019 at 00:51

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.

User

Posted 21 Feb 2019 at 07:18

Thanks Devonmaid,
Glad oh is feeling an improvement. Enzo clinic is Monday, same time as the nephrostomies, this would be the 4th postponement. I went down to the clinic to tell them that the nephrostomies have been arranged for the same time. I asked if there was any way someone could come up to the ward and go through the "new patient" assessment with him as it is beginning to feel like he is never going to get far enough to even try to start the Enzo. I have left it with the lovely receptionist in the day unit, I'm hoping they are going to have found a way when I pop back in later.
Even if he's not fit enough to take it now, at least they can keep checking his bloods in case he is in a couple of weeks.

Teacups, glad it's a little bit better. It's so easy to feel like we have no control, I can only imagine how our oh's feel about it.

User

Posted 23 Feb 2019 at 22:00

Things just see-sawing at the moment, when one thing improves something else deteriorates.
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.

User

Posted 23 Feb 2019 at 23:30

Nice to hear that someone was brave enough to speak up to the miserable consultant, maybe the nice doctor that gor upset, about time I’d say. sorry that things are so up and down, more down than up by the sounds of it. I will admit to you that John’s digestion is our major concern, it is currently causing almost all of his daily issues, except the complete and utter exhaustion and sadly, the return of pain in the hips (not liking that at all). John veers constantly between constipation and the runs, nothing in between, often he is a nice yellow colour, but if he can go to the loo he returns to pink. He is nowhere near N’s situation but it is a daily trial. I have noticed that the oedema is back too, makes me concerned that the Enza might be short lived. Pain also now quite severe in the shoulders and neck, hoping its not anything but will find out on March 4th our next onco visit.

meanwhile, the 70th birthday went wel, today, a visit to Rick Stein in Marlborough for the two of us. A delightful day.

Enjoy the kids stories, lovely to have them home, cuddles if allowed. Tomorrow is a new day.

love and hugs Devonmaid xxxxx

User

Posted 23 Feb 2019 at 23:56

Oh dear, is there room on that see saw for all three of us? We are still in hospital, but working on getting him home. He will be much more settled in familiar surroundings where people aren't telling him what to do. Seeing them distressed is so damn hard, isn't it. Now on a syringe driver, so pain better, but even sitting up a little in bed for the first attempt at a shave yesterday was hard.

Hope N gets to enjoy all the stories from the skiing. We are getting updates from the 18 year old granddaughter who is on her first tour of Europe and that is providing some much needed distraction. DM - the weekend sounds fabulous, so glad you got to do it. But sorry to hear the worry in the rest of your news.

User

Posted 24 Feb 2019 at 07:17

Dear DM and Teacups,
Sorry to hear your oh's are struggling too. You can both share the seesaw with me if you like, let's see if we can get it to stop crashing up and down and instead gently rock!!
Sending big hugs your way, I hope for all of us, today is better than yesterday.xxxx

User

Posted 24 Feb 2019 at 18:34

Dagnammit, N too nauseous to take any meds at all, put on a drip for the day and given anti sickness meds. Now got the trots, must have changed him a dozen times, thank goodness for proshield spray and lotion for keeping skin from getting sore.
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.

User

Posted 25 Feb 2019 at 21:56

Nephrostomies removed without issue, yay. Eating and drinking well ( albeit only 1.5 ltr) and stopped pooping for England.
No beds at the hospice today, maybe tomorrow or Wednesday. Otherwise he wants to come home and go into the hospice from home for a while. He doesn't want to stay in hospital any more which is a positive frame of mind to be in.
Very frail, kids came in and were a bit shocked but regaled us with tales of crashes and awesomeness on the slopes, very entertaining and more stories to come tomorrow when they visit again.xx

User

Posted 26 Feb 2019 at 05:22

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.

User

Posted 26 Feb 2019 at 20:06

Got out of bed, whoop whoop. Sat in the chair while I remade his bed. Eaten 3 meals and generally had a good day. No beds so just waiting. Left him planning what he is going to try tomorrow, sitting in the wheelchair and having a look at the rest of the ward if he can.

Taken down for a ct scan first thing this morning, onco had requested it in January when we saw him and they rang us on Friday to arrange N coming in for it😂😂😂 I said he's upstairs and been here for 3 weeks! Oh my days, our world of modern technology is sometimes not very efficient.....anyhow, another thing ticked off for onco to get a baseline if N ever makes it onto Enzo.

Absolutely shattered now, and trying to squash down the horrible thoughts of wondering how long this little high will last. Given N's track record I can't help but be scared. I've just got to not let it be the loudest voice.

User

Posted 27 Feb 2019 at 21:19

Teacups, I hope being home is going ok and that you've managed to get some more support. It sounds lovely to be sleeping next to one another. I really miss being together, I sleep really badly, finding myself sprawling all over the bed and awake at 4am wondering if it's time to get up...I'm so tired I can't think straight but don't seem to be able to sleep any better.
N is not sleeping on and off all day like he was, and managed to stand up for a couple of minutes using his walking frame. No beds yet but feeling positive about how stable he is. Sodium back up to 130 which makes a big difference and hb stabilised at 75 and climbing slowly each day.
N has the goal of the next clinic in mind. Rescheduled for mid March, he's aiming to be able to tolerate sitting in the wheelchair so he can attend this. Having trouble maintaining his blood pressure because of the low fluid intake, averaging at around 99/65, which leaves him feeling quite lightheaded when he sits on the side of the bed with his feet on the floor. Not sure what can be done to improve this.
Back to not pooping, docs think it was the co-amoxiclav giving N the trots and stopped it after 3 days, N has probably got another uti as he spiked a temperature 2 days in a row. Back onto the movicol to get things moving sooner rather than later, N doesn't want to do any more enemas if he can avoid it.
I can't believe 4 weeks have passed since N was admitted this time, the days just disappear even though we don't do anything!

User

Posted 28 Feb 2019 at 10:46

I could have sworn I typed a reply this afternoon - but obviously managed not to post it. I too can't believe that it is 4 weeks since N went into hospital. But I bet at times it seems way longer than that.

Our see saw does seem to be rocking more gently just at the minute, doesn't it. Pleased to see some more good news in your post. Standing, even for a short time, is a big achievement. And more alert is great. We have celebrated the consumption of half a banana yesterday, and today half a piece of toast and half a banana!

The last few days have been a whirlwind, some support kicking in, visits from community nurses, care service providers, OT and on it goes. Exhausting and mentally challenging. But today was on the whole a much better day than we've had for a while. And yes, feels much more comfortable sleeping in close proximity. Although I am discovering that our spare single bed which we've pushed next to the hospital bed, could really do with a new mattress 😁

User

Posted 28 Feb 2019 at 20:59

😄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.

User

Posted 28 Feb 2019 at 22:50

Hi Kentish,

So glad that today was a good day.

Fingers and toes crossed for tomorrow. Thank goodness for commo sense from your urologist.

Love and hugs,

Vicky x

PS A yam yam is a person from the Black Country 👍🏻

Broken crayons still colour

User

Posted 01 Mar 2019 at 09:20

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.

User

Posted 01 Mar 2019 at 12:43

Although N is feeling marginally better in himself the reality is pretty awful. Ct scan showed extensive liver and lung secondaries, so bad the onco didn't feel Enzo would be very effective but is happy for N to try in the hope it may improve N enough to try Cabazitaxel.
He was straight up with N that his liver is coping but is so badly diseased it may fail at any time and there will only be weeks left at that point.
Onco will circumvent "new patient " clinic and prescribe the Enzo. N understandably knocked for 6, we didn't expect anything other than bad news given his current state but it's still hard to swallow.
He doesn't want to come home now if there isn't a bed at the hospice, I get that he feels precarious and stress is not helpful in feeling any better.
Back to one foot in front of the other :(

Edited by member 01 Mar 2019 at 12:45 | Reason: Not specified

User

Posted 01 Mar 2019 at 20:39

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.

User

Posted 01 Mar 2019 at 20:42

xxxx

User

Posted 01 Mar 2019 at 21:11

Thanks ladies, sending love to all of you and yours. This is b****y hard😢

User

Posted 01 Mar 2019 at 21:14

Thinking about you. xx

User

Posted 01 Mar 2019 at 22:30

Dear kentish , I’ve followed your posts and felt your struggle,all I can do is offer my best wishes .
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

User

Posted 01 Mar 2019 at 22:38

Hi Kentish,

i follow your posts daily, and prey that N has a better day every day. I dont know where your finding the strength from, but im glad you are.

words are difficult to find, i hope you can forgive me. just want to say im thinking about you so much, and am wishing you the very best.

sending love and strength

xxxx

User

Posted 02 Mar 2019 at 10:01

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

User

Posted 02 Mar 2019 at 14:47

Thinking of you all daily. Very frightening !
Strength and wishes xx

User

Posted 02 Mar 2019 at 20:57

Words are all I can offer you both right now, loads of hope and love, keep strong .

Chris.

User

Posted 02 Mar 2019 at 20:59

Thank you @ Deblc

Thank you @Merrivale, I think “struggle” is a good description, nothing about this has ever been easy has it!. It’s so easy to get caught up in frantically trying to make things better that its easy to lose sight of the actual living bit. N and I played Rummy (card game) today, for the first time in a long time it felt like we were doing something other than thinking about this disease and its effects. I’m trying to keep myself healthy in both mind and body but I’ve just got over a rotten head cold and the tears keep falling, I don’t know about strong, I think I’m just dogged.

Thank you @ Mrs & Mr L, I don’t think there are any words, just thoughts, and cyber hugs and knowing that I’m not alone even if your paths are not the same as mine. Everyone has experienced grief at some point and can identify with how we are feeling. I appreciate your words, I often don’t know what to write on other posts either.xx

Thank you @Devonmaid, Glad to hear you got away, sorry to hear John wasn’t able to come on any walks, its really tough when they are left out/behind. I don’t know how you feel but I feel really guilty about doing anything “nice” that N couldn’t join in. That’s awful that your appointment was cancelled, I hope your new appointment is soon. Waiting and wondering is exhausting as is the effort of trying not to wonder!
This mornings urologist said he had spoken to the onco and asked if we had too, N said “yes, its not good” and the urologist agreed and said that it would be better to stay in hospital until there is a bed at the hospice rather than going home on Monday if there were still no beds available. After he left, N said to me “You know if I go to the hospice this time I might not be coming out” It’s so sad to hear him acknowledge this out loud but I’m glad I don’t have to pretend otherwise. In his usual way once this was said he moved on to a different subject and when asked by others how it was going, told them he was going to start a new drug and hopefully build himself up for the chemo. Whether this happens or not is irrelevant, his intentions are what’s important.

Thank you @ Chris J, I am only ever scared of the unknown, being told about the scan and the likely symptoms N will experience is truly awful but not frightening. I just want to know how his symptoms can be managed as they arise to relieve him of pain and discomfort. This doesn’t always mean being off his **** on OXYNorm!! Although he does seem to quite like it 😉.

Sending you all big hugs and best wishes for you own situations.
xxKatie

Edited by moderator 02 Mar 2019 at 21:21 | Reason: Not specified

User

Posted 02 Mar 2019 at 22:33

I am so sorry that things have become so hard for you both and pray that there is something that can be done and that a hospice bed is available soon.
Thinking of you and praying for you.

User

Posted 02 Mar 2019 at 23:22

Dear Kentish,

Sending love and hugs to you all. Heartbreaking for you,

Vicky xx

Broken crayons still colour

User

Posted 03 Mar 2019 at 08:57

Hi Kentish
Sending hugs. Been reading your posts recently and feel for you. You are doing an amazing job. Lots of love.

User

Posted 04 Mar 2019 at 04:00

Kentish, Hope the past day or two has been OK. So hard to hear N acknowledge what is happening. But yes, both recognising it does help somewhat. Bless him for always looking forward to the next possibility too. Like you, I am best when I have some idea of what is to come. But it does still frighten me. As you say, managing the symptoms and comfort are the aim. At our place we are doing that, but the result is one sleeping beauty a lot of the time.

Devonmaid - I loved hearing of your weekend away. So good for you both to have that time with the family. We have very fond memories of time spent near the Forest of Dean - have stayed a couple of times at Symonds Yat. But yes, it is very hard when you can't both enjoy walks. And hard to enjoy something you once would have done together. My profile is a very brief sketch, I'm afraid. But it gives you a general idea.

Love to you both.

User

Posted 04 Mar 2019 at 22:48

Thanks lovely people,
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.

User

Posted 05 Mar 2019 at 11:08

Great news about the move back to the hospice. Is there a view out that window? Must admit I am thinking a little longingly about the support that being in the hospuce would be. Sorry - one of those days.

I don't know how you manage to hold back those tears - you are amazing. I seem to be just on the verge of tears all the time. Only takes someone to look slightly sympathetic and I'm off. The lovely comment you had from one of the doctors would have done it for sure.

Good luck with the trips for radiotherapy planning and treatment. Do you need to double check that there is a nurse allocated and that plentiful pain meds are available??

Hope you both have had a good night.

User

Posted 05 Mar 2019 at 13:50

I hope things go well this week for you. You are both so brave. I am so glad that the staff were so kind to you and that you will have the support you need. Thinking of you.

User

Posted 07 Mar 2019 at 14:01

Teacups, Kentish, I am so moved by your stories. You both truly are an inspiration and should be so proud of yourselves that you are up there fighting for your OH's so magnificently.

I hope that all goes as well as it can for you both, and also for those in the same boat but are not strong enough or wish not to share their journey on here.

Good luck,

Phil

User

Posted 09 Mar 2019 at 04:37

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.

User

Posted 09 Mar 2019 at 09:34

Morning Kentish

I'm so pleased that the move to the hospice has gone ahead, i am hoping that radio silence means that you are getting support and some rest and nothing sinister. so lovely of you to send a hamper into the ward staff, i have no doubt they will appreciate it and remember you both. I’m wondering how the kids are doing? Their lives are so disrupted but I know the hospice have specialist social workers who can help them, so that's good. I’m so glad that N was able to speak from his heart, if not now then when?

Teacups, can I ask if you are able to get Hospice support? It would really help both of you. Life sounds pretty grim for you at the moment. We are ok right now, that’s all I can say, the little break did us good. I’m going on my annual retreat to Portugal in two weeks, a week in the mountains, no food or caffeine, just juice and yoga and sun and my daughter for company. No PCA for a week, worried sick about leaving John of course, but going (I think) as it does me such good.

I'm rattling on hoping that silence means good here.

thinking of you all

with much love

Devonmaid xxxx

User

Posted 09 Mar 2019 at 10:05

Thanks for your thoughts everyone.
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

User

Posted 09 Mar 2019 at 12:18

Oh, Kentish, I was worried that it hadn't been a good week. I'm glad at least that it is easier for you and the kids to go in and out. I do hope you all get a bit more sleep, and some settled time together.

Devonmaid - thanks for your concern. We have support from a palliative team. And I have made an appt for some counselling over the phone. H in some ways is well, but has bone mets and fractures and has lost a lot of strength. They are worried that any weight bearing may make the fractures worse, so he is on bed rest. Cognitive function was not great before this, and morphine hasn't helped. But the strong will is still there. So he feels that he is in jail, and I am the prison guard. Really, really don't want the end to come with him hating me. Your retreat in Portugal sounds wonderful.

User

Posted 09 Mar 2019 at 12:48

Dear Kentish; Teacups and all others in a similar situation my sincere good wishes and prayers go out to all at such painful times. Living with Prostate cancer is certainly a prolonged and challenging experience!!! My love to you all xxx
Tom

User

Posted 09 Mar 2019 at 15:04

Thanks Tom, that's very kind of you.xx
DM, I didn't see your message when I uploaded earlier, I must have been writing it as you posted.
The kids are "ok", I think this is as good as it will get. They realise that N is iller than ever and we have talked about him maybe not being able to come home this time. It is easy to just sit with one another at the hospice and they need to be with me and N after such a long period in the hospital where they only visited a few times.
They aren't interested in the social workers, they have both had initial meetings and then declined anymore. I think they talk more to the staff especially the auxillaries/csw's, they are very down to earth and just come straight out with the difficult questions.
Lots of people offer to sit with N so I can have a break/rest but at this stage I don't really want to, I'm not sure everyone understands this or me, I want to sit while he's sleeping, I don't feel any desire to get away from it and I just worry when I'm not here. I am not "waiting" we are just being together. We haven't had long enough together and I don't want to miss a moment, I want to make the most of the moments when he is wide awake and it's so easy to miss these.
Everyone does it differently, and at the moment I need to be with him to make me feel ok.
I hope you are able to go to Portugal, it sounds lovely, I would add surfing into the mix for my ideal week away, and catered, I'd never manage a week without solid food ;) In my mind, me and the kids will be going away together to readjust at some point this year. I hold onto that thought as a point of light in the future.
Oh Teacups, I know what you mean, I really don't want N to resent being kept at the hospice or having any interventions that make things worse, it really is my one of my biggest worries. I try to give N control over everything he can, when to be washed/changed/eat, what to eat and who visits and what drugs he wants/doesn't want otherwise I feel like he has no control anymore and is just being "kept".
I hope the support you get helps you through this really difficult time. Thinking of you.xx

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Posted 09 Mar 2019 at 17:33

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

User

Posted 09 Mar 2019 at 22:18

Kentish

A very moving post. Thinking of you, extra big hugs to all you ladies.

Thanks Chris

User

Posted 11 Mar 2019 at 00:33

Dear Kentish,

Sending the biggest hug ever,

love from Vicky xx

Broken crayons still colour

User

Posted 12 Mar 2019 at 23:16

Thank you Vicky, I hope you and your family are ok ish. I get proper fed up of people asking me if I'm alright, of course I'm not alright....but I'm ok ish. I'm not a collapsed heap of snot covered tears and I've washed every day so I think ok is about right.
Doctors rounds in the hospice today and N asked their opinion of his prognosis as he was talking about coming home in a few weeks and building himself up etc. They asked him if he really wanted to know, he said yes and they said 2 months at a stretch. It was heartbreaking, I really don't think he thought they would say such a short time. They left us to talk about how this affects what he wants to achieve in the next few days and weeks, mostly he just wants to come home for a bit, we talked about staggering this if he is able to get in the wheelchair but I'm not sure he has the energy.
I collected the enza and it's sitting on his shelf, he's thinking it may knock time off if he reacts badly to it, who knows, I really want him to take it but I'm also really afraid it will make him poorlier, the doctors are on the fence on this one.
I talked to both the children tonight about today's meeting, they're smart kids and knew it was bad but it's still really hard to hear. Lots of tears and hugs, they were both brave enough to say they would rather Dad stay in the hospice as it's so likely he'll be rushed back to hospital if he comes home. We had a lovely belated birthday lunch at the hospice today with the kids and some other family members, they are so good at chattering on about school/work etc. N doesn't join in much but likes the buzz around him.
I'm hoping for a few more of those days.
Pain/nausea is under control, bowels are an ongoing issue of continuous evacuation or a day of not going and N feeling desperate to go but unable to. No happy medium to be found.
When I left tonight he said "I haven't given up you know" I don't think people always give up, they do what they can until they can't. I don't want him to think we felt he gave up, it's amazing he's still here after the catastrophes he's been through.
Sending hugs out to all those who need them this evening.xx

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