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Making the most of it

User
Posted 13 Mar 2019 at 02:03

Dear Kentish,


I’m heartbroken for you all. I‘m at a loss of what to say. So, I’ll do my best to reassure you that you, N and the kids are coping remarkably and are truly amazing. You really are making the most of it and still managing to create magic moments to last a lifetime. I think that N knows, that you know, that he hasn’t given up. He is so thoughtful and is making sure that he tells you before you go home. 


We aren’t at this stage yet but it’s coming. On Laurence’s initial oncologist report it states ”12 months overall median survival.” He was admitted last June and had tests during his two week stay. DRE, CT scan, MRI and biopsy.  The subsequent results formed the basis of his prognosis. We too are making the most of it. Today we watched two episodes of ’The Wire’, one episode of  ’Mother, Father, Son’ and an episode of ’Vera’. Rock and roll it ain’t but L made us a lunch and we sat cosy and warm while the rain poured outside. L dozed at times (The zomorph zzzz’s) and the dog snored. It’s at these times that I have to force my mind to not wander too far into the unknown.   


I am at work tomorow so i suppose I’d better try and sleep. I’ll send you love and strength to face the day ahead. 


You are in my thoughts. You are remarkable.


love from Vicky xx 


 

Broken crayons still colour ❣️

User
Posted 13 Mar 2019 at 07:11

Thanks Teacups, Thanks Vicki.


You're right, this is hard, it's a mental, emotional and physical exhaustion. The people around us give us the support to keep putting one foot in front of the other.


Cosied up in this horrible weather sounds lovely, N's got a window bed and a radiator so we can watch it but feel snug too. Fingers crossed for a lovely boring uneventful day.xx

User
Posted 13 Mar 2019 at 07:42

Oh, ladies, just at the moment the thought of being cosied up sounds blissful.  Hope today is indeed a boring, uneventful one, Kentish.


We are back in hospital, sadly.  The last week at home has been very difficult, and sadly in H's very confused state he has decided that I wasn't getting him the help he needed, so is now so angry with me and doesn't want me near him.  Heartbroken doesn't begin to describe it.

User
Posted 13 Mar 2019 at 08:41

I am so sorry. You know him better than anyone ans will understand that he does not mean everything he says. I can't begin to imagine what you are going through but my prayers are with you.

User
Posted 13 Mar 2019 at 14:09
Oh Teacups,
That's horrible for you both, I hope they are able to settle him so he is able to be more like himself. Thinking of you.xx
User
Posted 13 Mar 2019 at 15:22

Originally Posted by: Online Community Member


We are back in hospital, sadly.  The last week at home has been very difficult, and sadly in H's very confused state he has decided that I wasn't getting him the help he needed, so is now so angry with me and doesn't want me near him.  Heartbroken doesn't begin to describe it.



Teacups I feel so much for you. Hugs and more hugs. Hope he comes to realise that you have done your best in very difficult circumstances.


Kentish Hugs to you as well, keep going you are doing so well.

User
Posted 13 Mar 2019 at 23:02

Oh Kentish


so sad to read that they’ve given a timeframe, it could be right but maybe not, its always hard to know what to wish for when someone you love is so ill. i have a very strong memory of my most loved brother in law, throat cancer, one year prognosis, made three months and looking at him and knowing that there was no way he could carry on, it helped me, if not my sister at the time, though yes, it does now with the passage of time, he was 52 years old. That’s one of the many reasons I feel so lucky that we have had more than eight years, despite the challenges along the way. I hope what I’ve said isn’t insensitive, I think we tend to be realists here, with our humour and our empathy and our dogged determination to say it like it is. Please forgive me if I have been insensitve, I hope you know that I’m trying to say that it’s not wrong to want it to end when the time comes, even as painful as that is. crying now at the thought, its very raw for us isn’t it and brutal.


I think you are all immensely brave and an amazingly loving family, your childen are such a credit to you and their chit chat must come as a welcome distraction and a joy. They sound so mature even though what they are going through is the worst thing anyone can imagine.


I hope that N decides to stay put but i think hospices can arrange for short home visits if you both want it and can cope. My friend (Mo, who was a massive contributor here) brought her beloved Mick home for one day, he had SCC so it was quite something to organise. 


Teacups, my heart goes out to you, not only do you have a seriously ill husband but you are getting all the blame, it’s so unfair. I hope with the right meds he will see that you are doing your best, what more can any of us do. I know my sister has a lot of unresolved conflict from being shouted at during the last weeks of her husband’s life, it was genuinely awful and has left lots of mental scars. Understanding it is one thing, forgiving is another and easy to do given the situation, but forgetting, no never, that’s much more difficult.  It cannot be resolved, only forgiven and left in the past when the time comes, but that has taken a long old time, and will never completely fade. I think that’s where hospice support really can help as she had none until his last few hours on NYE, yet another one our family would like to forget - it always seems to be NYE that bad things happen to us. Hugs.


sorry for the ramble, no alcohol was consumed, just thoughts on a sad subject, close to my mind for obvious reasons. How will I cope, when this comes my way? I hope i can learn from those who have trodden this sad path before.


on a brighter note, John seems to be quite reasonably well at the moment, bloods taken today in prep for oncology on monday, our first results since he started on the Enza. I am truly grateful for each and every day.


Thank you both for updating, my love goes with you both.


with love


Devonmaid xxxxx

Edited by member 13 Mar 2019 at 23:07  | Reason: typos as usual

User
Posted 14 Mar 2019 at 01:19

Devonmaid, you aren't rambling at all.  You are always so understanding and insightful.  And thank you for sharing some of those stories.  I thought seriously about whether to post my message yesterday, but as you say we've always tried to be real here.


I'm happy (boy is that an understatement) to report that today is a better day.  While he is in hospital he is actually on an oncology/palliative ward, under the care of palliative specialists.  They've changed/ increased the sedative, so I came in this morning to hugs and tears.  We feel something is likely going on in his brain, but whether it is meds, mets, or whatever else who knows.  His emotions are all over the place, and he has been holding his head a lot.  But at least he is comfortable, well cared for and not too far from home.  And thank god I've been able to hold his hand and tell him I love him. And like your sister forgetting may be difficult.


Love to you all.

Edited by member 14 Mar 2019 at 01:21  | Reason: Not specified

User
Posted 14 Mar 2019 at 07:48

What wonderful, strong and loving ladies you  all are. When i read your updates i am usually driven to tears. I hope i have learnt from your stories to understand better my other halfs journey is parallel to mine but not exactly the same.


All i can say is i send you all my love and hugs and hope today is a good day for you all.


Phil

User
Posted 14 Mar 2019 at 09:18

Teacups


Your update made me so happy, mad isn’t it? Hospital admission and meds makes you happy, are you nuts woman! Well, in this case that your lovely man is now comfortable and more the man you know and love is so wonderful, I cried to read it. I have sometimes been shocked about what wives have had to do to care for their love mainly because my sister was left to it as she is a nurse, but she was his wife and that was forgotten 15 years ago, so I’d rather assumed that this wouldn't happen these days, but then nursing care has changed so much too in that time. When my daughter gave birth recently, i noticed the next day that her hands were covered in dried blood, she was bed bound and hadn't been washed after a traumatic birth and post natal surgery, well some bits had been but not her hands  and she'd been feeding a new baby. nor had they offered to bring water to help her brush her teeth, simple things that are about care, decency and comfort and they are missing. There was also lots of blood up the delibery room wall, and it wasn't recent, shudder. 


another ramble, sorry!


We had a weird night, John woke me saying he couldn't breathe, his chest was so tight. I took his blood pressure (as he is on Enza) and it was very high, but in the orange zone no the red. I gave him his inhaler (he has mild asthma) and pondered if a heart attack was underway. Then he promptly fell asleep. Was it a panic attack? A dream where he was scared, something real?  I hesitate to mention to the oncologist on monday in case they withdraw our lifeline of Enza. Think I might see the GP, right now I'm in ponder mode.


Thank you Phil for your lovely comments, not all PCA goes this way by any means. But this forum is a lifeline for us all and even sharing the horrible bits is cathartic. 


Love Devonmaid xxx

User
Posted 14 Mar 2019 at 22:22

Devonmaid,
“its always hard to know what to wish for when someone you love is so ill.”
You hit the nail on the head there, after the children and I talked all three of us agreed that although we want N to stay we all wished it was over for him.
I don’t think anything you have said is insensitive, I think you are honest and keeping thoughts like these to ourselves hurts because we feel so guilty for wanting it to be over even though the motivation for the thought is for your love’s relief from pain.
The sodium has taken a nosedive again and the hospice felt it would be a good idea to try the demeclocycline just one more time and that they didn’t think the previous attempts were the cause of the horrendous symptoms, just a really unfortunate coincidence. So, psychosomatic or not N is feeling pretty ropey today and has had 2 extra doses of anti sickness meds, lost his appetite and is very, very tired.
He’s also developed a phlegmy cough and bubbles when at rest but because he’s so deaf, I don’t think he can hear it, though I’m finding it quite distressing to listen to!
When I’m at the hospice, I change N, wash him, help cut up food etc, get drinks. The staff are always asking if I need help or want to take a break, I feel so useless just sitting there waiting for someone else to do it. He only asks me to take his dentures to be brushed, if I didn’t do it then he probably would have stopped using them. I also wash his fingernails, this is something they don’t do either in hospital or in the hospice, strange that they wipe bottoms but don’t use a nail brush…I don’t know why.
I hope the enza is having a positive impact and the chest pain was just a dream, love and hugs to you both.xx


Teacups,
Hoorah, I’m so glad you feel he is well cared for, it goes an enormous way to feeling that you can carry on when you know that they are being looked after when you are not there. There are always moments in any relationship that are hard to forget, mine would be when I was pregnant with my second and turned into a psycho, I punched N in the arm I was so angry, we both put this down to raging hormones and decided we would stop at 2! I suppose what I’m trying to say is those moments are often caused by something extraordinary, which is perhaps easier to live with than if they weren’t.
I hope today has been peaceful for you both. Love and hugs to you both.xx



Phil,
Thank you, I hadn’t really thought about it like that, I try very hard to support N but I can’t always know how he is really feeling or what he is actually thinking, I try to offer openings so he can tell me to “go home” or “stay the night” and when I think he doesn’t want to tell me but does really need to (if you know what I mean) I act all strong and capable and encourage him to share it so he doesn’t feel the weight of it on his own. Then when I go, I cry, a lot.
I read your profile, I get the needing to know, when you’re feeling uncertain and the worry is getting to you it can be so hard to get on with anything else. Best wishes and hugs too.xx

User
Posted 15 Mar 2019 at 21:45
A pretty rotten day for N, chronic nausea and tiredness. A combination of very low sodium and very strong anti nausea meds means he's confused and "out of it". I'm half expecting a phone call to go back to the hospice he seems so poorly. I didn't know whether to stay or come home, torn between our daughter and him. I know they'll call me but I just want to be sitting there.
I'm struggling today, I suppose because he has deteriorated again so quickly, from playing cards last week to not knowing what he's saying or doing today. It's like the third or fourth run at grieving the loss of "him" and I'm not sure he'll come back again this time.
To add to this stress a doctor asked to talk to me earlier, I thought about N's rapid deterioration but instead it was to say that it had been noted that I was doing most of N's personal care and that I was at the hospice a lot, I don't know if it was meant to come across as a negative or if that is just how I've taken it but I feel judged. I thought I was looking after him in the only way I can now but now I feel uncomfortable because they are taking notice of this. Then I wondered if perhaps N had said something yesterday or whenever and would like me to stop doing this, he was in no fit state to ask today but I'd stop if he wanted me to.
I'm too embarrassed to ask the staff if he did. I feel a fool, my previous post saying all the things I could still do to show him I cared and this evening I'm not sure whether to pour him another glass of water or not or to check if he's been to the toilet before I left.
I'm tied up in a knot of anxiety over ringing to see how he is, going back or going early tomorrow or just going at 9am like I have been.
User
Posted 15 Mar 2019 at 22:10

Dear Kentish,


I honestly dont know where you find the strength to carry on. I’m so sorry N is having a bad day, I’m praying he rallies after a good sleep. I’m sure its just out of concern for you the staff are mentioning the amount of help youre providing, and who wouldn’t help their loved one as much as possible. I think of you every day, and the struggles you and N are enduring, my heart breaks for you. I am so happy to read when you guys have had a ’quiet day” I’m praying you have many more.


Michaela xx

User
Posted 15 Mar 2019 at 23:19
You do whatever you think is best, he is your man not theirs. You are a 🌟.
User
Posted 15 Mar 2019 at 23:49

Kentish


Is there one of the staff who you get on really well with, could you discuss with them what has been said. 


Thanks Chris

User
Posted 16 Mar 2019 at 00:21

Oh my dear Kentish,


A deteriorating day is hard enough, isn't it.  Please don't feel they are judging you.  You need to do what feels right for you and N.  My instinct tells me that if a nurse or a social worker had spoken to you that the message might have been different.  A friend who was a nurse for many years had such a conversation with me the other day - but expressed as concern that I was close to burning out, and that I was going to need strength to get over this trauma. And that one way to do that was for other people to take some of the load.  I'll need the strength for me, but you'll need the strength for the kids too.


I hope tomorrow is a better day.


For us a quieter one - H was unsettled and hit out yesterday when they washed him, the one morning when I wasn't here. But the feeling is that his pain had increased.  An increase in the meds, and he was comfortable this morning, when I was pleased that I got here in time for the wash.  But sleeping all the time now.  As you said the other day, I don't want to imagine the life without him, but nor do I want to extend his suffering.  So, so hard.  And yes, it seems every step is another grieving one.


I hope you get some sleep.  I had a better night last night, and feel better for it today.


Sending the usual buckets of love.

User
Posted 16 Mar 2019 at 02:26

Originally Posted by: Online Community Member

To add to this stress a doctor asked to talk to me earlier, I thought about N's rapid deterioration but instead it was to say that it had been noted that I was doing most of N's personal care and that I was at the hospice a lot, I don't know if it was meant to come across as a negative or if that is just how I've taken it but I feel judged. I thought I was looking after him in the only way I can now but now I feel uncomfortable because they are taking notice of this. Then I wondered if perhaps N had said something yesterday or whenever and would like me to stop doing this, he was in no fit state to ask today but I'd stop if he wanted me to.
I'm too embarrassed to ask the staff if he did. I feel a fool,  


 


You are not a fool and you are not being judged. I am sure you know that N does not want you to stop doing these things for him. However, the staff at the hospice see these terrible times unfolding before their eyes day in and day out - some families arrange for hospice care precisely because they don't want to do the things you are doing so perhaps the doctor just wanted to be sure that you are caring for N's personal needs because you want to and not because you feel obliged. We often say on here 'don't forget to care for yourself' - who cares for the carer and who will pick up the pieces if you crumble? It is part of the hospice staff's job to care for you as well, and perhaps to make sure that when the time comes you feel able to just sit and be peaceful with him. 


I have been in that space a number of times and the one thing I have learnt is that if you do what feels right, you are in a better place in the weeks, months and years after because you have nothing to look back and regret or replay and over-analyse. The staff at the hospice have a great insight into how most people cope with the unbearable and they will undoubtedly have seen people collapse with the strain of grief but you will not be the only partner they have ever come across who coped by doing what feels right. I think I have told you before that I stole my mum from a hospice because my instincts told me that I could care for her better in my own way - others were shocked and the hospice staff were concerned but I have never regretted it for a second. 


Be brave and sure footed x 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Mar 2019 at 07:53
As said above,

YOU need to make sure YOU care for YOU in all of this. You sound exhausted and confused, all signs of stress.

It is natural to want to do all you can, and everything they need, for a loved one. But, please don't get to your breaking point.

Could you speak to someone, to see what support you could get to enable you to carry on giving the care you have been?

What you're doing is incredible.

atb

dave



Do all you can to help yourself, then make the best of your time. :-)
User
Posted 16 Mar 2019 at 08:28
Thank you for all the replies, lots of sound advice. After a night spent waking almost every hour I'm just going back, I am tired but not exhausted and today I don't feel any happier about the conversation than last night.
I thought that the staff at the hospice "got me" I've said before that I've felt nurses, doctors etc have not understood where I am coming from and that "matter of fact" is my usual go to. A straight answer is very difficult to give with cancer but as near to is better than the unknown.
I wonder if this is taken for "denial", being pragmatic and not showing masses of emotion about changing N and doing the personal care. I just choose to cry at home, in the car, by myself. On the days where N goes to the loo 12-15 times, if i didnt clean him then I wouldn't see him. No sooner is he cleaned than he goes again. I would spend the day sitting in the corridor waiting to go back in, and then for example the last 2 days he hasn't been so I've just sat with him and reassured him when he comes to.
There are so many reasons for staying at the hospice all day, being there for the lucid moments, calling the kids to come at the best times and these outweigh the hours spent sitting, though I've done some sewing, birthday cake icing and lots of crosswords while I'm there. But I think I'm most upset at feeling I have to explain this, justify it. I watch the other wives go home after an hour or visit for a couple of hours in the evenings, they are in their 70's/80's, none of them physically able to do any personal care for their husbands. N and me and our family cannot be grouped with them.
I will just carry on this morning but I don't feel connected there now. Trust is a very fragile thing especially when there's a lot of stress. I felt confident that i was doing what is right for us all and now I don't.
Hoping N has had a restful night.
User
Posted 16 Mar 2019 at 09:22

My heart breaks for you reading this. It’s such a horrific time that frightens me to the core. I worked as a HCA in a nursing home for a year not long back. I nursed many men and women who were at end of life , including one end-stage PCa man who was 70. I think you are amazing and should carry on how you see fit , however I would add that at my home we didn’t like relatives doing too much care , mainly because of the paperwork ie knowing he is turned correctly re pressure sores , monitoring food and fluid intake etc. We did have one wife that was always in , and it did cause some issues , but we learnt to work round it with some boundaries. I know I don’t know you but I’m sending an enormous warm cuddle full of support and respect and strength xx

Edited by member 16 Mar 2019 at 13:25  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 16 Mar 2019 at 18:55

I had wondered that too Chris, they aren't monitoring food and fluid, no one checks he's restricted it except for him and me, they aren't measuring urine output and he's classed as "independent" regarding turning as he can move himself around the bed and readjusts himself regularly anyway. There is a poo chart to list when and what type/size and as they change him after I've gone and in the mornings they inspect for pressure sores at that point according to the charts at the end of his bed.
I wondered if I have been doing it wrong, not keeping him clean enough or putting enough barrier cream on, and when he's washing/being washed, not doing it the right way.
I don't know, I just know I feel like I am out of place, unsure of what to do and say, whereas before I felt comfortable in my role as his listener, caregiver, wife.


Country boy,  I didn't feel confused or close to breaking point until doubt crept in,  although yesterday was horrible it was bearable and I thought I was coping well enough. Perhaps I'm not. Second guessing myself is a bad place to be, not helpful in anyway and a useless mindset to have right now when N and the kids look to me for strength and support. Now I feel like those staff I looked to for support are doubting me and if they doubt me then am I doing what's right?


N was still very tired today but not sick so I asked him carefully if he wanted me to carry on cleaning him or if he'd rather the staff did it. He was adamant he would rather I do it as a general rule but understood that when the whole bed needing changing this morning and I asked him to bleep the staff to do it as they are much quicker and have the stuff for cleaning the bed too.
A friend came to visit and I offloaded this and asked what she thought, she thought that perhaps my age and willingness to get stuck in had thrown them and they weren't sure where the place for that is. I'm guessing home but that's not an option at the moment.
I don't want to be that "wife" who gets in the way and I suppose that's how I feel too. So I took a cue from the other wives and walked away when the meds came round, the flushes were done and when they changed the bed this morning. It didn't feel right and I probably won't do it again as N couldn't remember if he'd had a flush and asked me to get the nurse to come and do one. (She already had).
Regardless of this, if "this" even exists, I'm probably being over sensitive, N had a better day and both kids spent a couple of hours each with us in between working and their social lives. We played a game of rummy, albeit at a very slow pace for N, if the sodium doesn't improve then neither will his cognitive condition so another adjustment for the kids to make but easier than the horrible vomity situation of yesterday. Got to find that ray of sunshine in these dark skies.....


 

Edited by member 16 Mar 2019 at 20:09  | Reason: Not specified

User
Posted 16 Mar 2019 at 20:56
Thinking of you and hoping you will feel confident that you are giving N all the comfort he wants and that you do whatever feels right to you and to him.
I sat with my Mum when she was at the end of her life and I regret that I let the nurses do some of the things that I know she would have liked me to do but this was the nhs hospital not a hospice and relations were not expected to do much although when she was ill I did help her with her food and also others on the ward because they were often left to fend for themselves after having strokes etc due to there being too few staff to give them time.
I hope that if we reach this stage that we will be able to look after each other to the best of our ability and that we will be allowed to do it.
I am sure that you will work it out in your own way and that perhaps you could talk to one of the staff to check out what was meant by the comment. When we are under pressure and coping with things that are so difficult, we become extra sensitive to comments of others, which might not be meant in a negative way. They will be concerned for you too and aware of the strain on the whole family.
User
Posted 16 Mar 2019 at 22:09

Kentish


i think the person who spoke to you would be mortified if they thought they had caused so much stress, my thought is that they were giving you a way out in case you thought you had to do it. I’m pretty sure i wouldnt want to do it, but I can’t be sure unless and until the time comes. i think being in the hospice is meant to be a time for you both to be husband and wife and mum and dad, not nurse and patient, and they maybe thought you felt obliged. How long you stay there is your call i think, our local hospice has family accommodation to help with that situation. When John has been in hospital, I’ve stayed every minute i was allowed unless he needed a break or I did. I do think if this was me i’d have to ask them outright as I would feel uncomfortable. That is not what a hospice is for.


I think they think you need a break, but if so, why not just say so? Mostly they are usually just plain speaking aren't they.   


Bless you, you didn't need this worry on top of all of this. 


Big hugs from me today.


With love


Devonmaid xxxx

User
Posted 16 Mar 2019 at 22:33

I'm sure they probably did mean well but I can't shake the feeling of doubt. I thought I was doing good job of wifeing, and trying hard to be mum too and this has made me doubt that.  Just because I think I'm doing alright doesn't mean that's how others see it and they obviously don't otherwise nothing would have been said in the first place. Drawing attention to something I thought was a positive and questioning it makes it feel less so.


I can't change that it has been brought up, I think I might just sulk for a day or 2 more and then I'll probably get over it and carry on as before. I can hear how irrational and paranoid I sound, this is obviously a weak spot in my armour that I didn't know I had, thank you everyone for your kind words.xxxx

User
Posted 16 Mar 2019 at 23:02

Kentish, never doubt for a minute that you are doing the most excellent job of wifeing and mothering.  We each do it in our own way, and your way is right for your family. I hope they aren't judging you, but are badly expressing concern.


You aren't sounding paranoid, but just like me you are sounding tired after months and years of worry.  And we second guess everything we do, wondering if every step has been right.


Peaceful here, sitting with H, who can no longer respond to me.  Glad we came back in to familiar surroundings and staff.  His own room and music playing.


Sending love, and wishes for a better night's sleep.

User
Posted 17 Mar 2019 at 09:59

Teacups, 


My heart goes out to you, you sound so calm even though we know what must be going on under the surface. Please remember that we are with you in spirit and hoping for peace for you both. Hugs.


Kentish


I get what you are saying, it would leave me feeling discombobulated too, I think it's a shame that they have made you feel this way and I think they deserve to know as I really can't believe that was the intention. Why not give them a chance to explain what was meant? I know me, I would feel so upset I'd be seething underneath and questioning everything, not something you should be expending energy on at the moment, its so unfair. On the other hand I'm not good at holding grudges either, sounds like you are similar.


I hope you have had some rest overnight, and N has had a comfortable night (just about the best we can ask for isn't it?). I hope the children are ok, 


I wish I could convey how much I feel for you all


with love


Devonmaid xxxxxx

User
Posted 17 Mar 2019 at 23:08

Thank you Devonmaid, you do understand, I know.  And you do convey it. Calm on the outside, but even that is a very very thin veneer now.  Had to warn those outside the tight immediate inner circle yesterday, so a tough day.


I've been in here for a while this morning.  Still peaceful, and I'm running Jerusalem, Land of Hope and Glory and now some welsh hymns through our little speaker.  So all is as good as it can be in these terrible times.


Kentish - love to you.  I hope today has been OK.

Edited by member 17 Mar 2019 at 23:59  | Reason: Not specified

User
Posted 17 Mar 2019 at 23:17
You are on my mind, Teacups
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2019 at 09:09

Teacups


That thin veneeer, oh I know it. I’m living some kind of ”normal” life again at the moment, thanks to the Enza, but I find myself sounding off on social media about things that annoy me (the horrible B word, local politics etc) and I have had to remove myself from some groups because I'm becoming that person, so opinionated! It's a release i know but not really fair. I'm off on my annual jaunt to Portugal this week, a week in the mountains with the childless daughter, who works for Honda (bad news story, made me furious), no food or booze, just fresh juice, yoga, walks in the mountains, fresh air, freezing lake swims, Jacuzzi and like minded people. I tend to come back utterly renewed, 10 Lbs lighter and looking and feeling ten years younger. I booked it six months ago neve thinking i would be able to go, but I am. I will be able (just about) to catch uo from the mountains.


Kentish,


Hoping you had a reasonable night and that N is feeling a bit better today. much love coming your way both.


I wish you could join me in the mountains of Portugal, a healing retreat for the body and soul. Off to oncology today.


with love always


Devonmaid xxx 

User
Posted 18 Mar 2019 at 11:10

Lyn - thank you.  And Devonmaid - parts of your retreat sound absolutely wonderful (note that I said parts!).  And yes, it would be lovely if we could all go.  But it is so good that you can go.  Hope you do come back refreshed and renewed.

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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