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User
Posted 04 March 2016 07:21:45(UTC)
Thinking of you Rosy. I always come to your link first.
Sending you a hug x
User
Posted 04 March 2016 07:38:16(UTC)
Rosy

Just to let you know we are thinking of you.

Thanks Chris
User
Posted 04 March 2016 08:07:33(UTC)

We do think of you at this hard time and can only wish the best.
Many moons ago I used to suffer with stress eczema and I was given a scalp lotion / liquid to put on it even though it was on my calves. Cleared it up in days. Maybe you could ask.
Chris x




If life gives you lemons , then make lemonade
User
Posted 04 March 2016 08:23:53(UTC)

Thinking of you Rosy.

Please go and get something for the eczema as you don't want to risk it getting infected.

We can't control the winds - but we can adjust our sails
User
Posted 04 March 2016 22:59:42(UTC)
Hi Rosy
Stressful times show up in different ways in each of us. Eczema is not nice, I hope the doctor can go you something for it. I find my hair is hopeless when highly stressed, eye bags etc. Outwards signs of inward turmoil.

I like the fact the your OH is keeping positive (or in denial), it's been very noticeable here that once people give up they do go down hill fast. I see no real harm in him thinking this way at the moment. Better to have hope.

Lots of love
Allison xx
User
Posted 08 March 2016 22:45:36(UTC)

Thanks for all your replies as I sit here covered in E45 cream! Yet another difficult day.

We phoned the hospital yesterday to say he may not make today's appointment with the chemo nurse as he is so weak. She phoned us this morning to check that we were able to come as his Hb had dropped from 10 last Monday to 8 this Monday. She was shocked at how awful he looked and just to push the point he threw up rather spectacularly in the clinic room! So he was admitted so he could have a transfusion as soon as possible - which was eventually started at 5pm having been there since 10am. Also to have lots of fluid overnight as he's dehydrated and had a very low blood pressure. He was getting very irritable about all the waiting around to be admitted and everyone asking the same questions over and over, and was all for going home. I'm afraid I left for home to get his things at that point so he would have to stay! No point going through it all again tomorrow.

His psa is now up to 133 from 59 four weeks ago. Also his platelets are low and the consultant is considering whether to stop the Abi. He looked a bit better this evening and even managed to raise a couple of smiles.

Rosy

Thanked 2 times
User
Posted 09 March 2016 07:34:51(UTC)
I am so sorry to read of your continued joint battles, I wish you both every strength to deal with the now and the future. Please keep posting as it helps people like me understand what may be to come. Kevin
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 09 March 2016 09:19:17(UTC)
Oh Rosy
What a terrible time you are both having. I hope the transfusion helps. Clever tactic to nip home when you did. Hospital time is not like normal time is it?

Thinking of you Rosy

Love Devonmaid
User
Posted 09 March 2016 09:50:01(UTC)

Thinking of you, Rosy. Afraid I used the same tactic with Neil once or twice as it was so stressful listening to him complain and I felt so helpless. Sometimes you just have to walk away for while even if just for an hours peace and a cup of tea . Sending love,

 

Fiona.

User
Posted 09 March 2016 11:17:48(UTC)

In my thoughts Rosy.

The other half is in the right place at the moment. Good strategy going off for the overnight things, it gave you a break and was a good practical excuse.

I hope the transfusion gives him (and you !) a much needed boost

We can't control the winds - but we can adjust our sails
User
Posted 09 March 2016 22:11:28(UTC)
Oh Rosy,
So many people shy away from posts when they can't offer a strategic answer , they want to give a positive but sometimes there is no positive and all we need is a shoulder , a voice or just to vent and be heard.
So I hear you , keep going you are doing an amazing job. I have fingers and toes crossed for you . From another lady that understands and gets it . Life can be pretty Tish sometimes.
You can do it , and we are here behind you..
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 09 March 2016 23:43:47(UTC)

Thank you all - I do appreciate your posts and you're right Julie it's just nice to know people are there even if there's nothing to say.

Well he is home now after a terrible night with no sleep. A man in his bay had a cardiac arrest and subsequently died and then 2 others called out all night long!

The doctor on the ward decided he should only have 2 units instead of the 3 that the consultant had requested. Very frustrating as that means he'll need more sooner. Each unit seems to give him one transfusion free week. The chemo nurse was steaming and contacting the consultant to complain. At least they poured him full of IV fluids to rehydrate him.

He hasn't seen the consultant but she has taken him off the Abi due to his low platelets. Having previously said there were no other options, she left a prescription for him for Stilboestrol. Has anyone else had this at this point? We don't see her until 4th April and there are no available earlier appointments.

Having caught up on a few hours sleep he's definitely brighter in himself and even ate a bit in hospital. But can you believe he turned down rib eye steak this evening!! 

Rosy

Thanked 1 time
User
Posted 10 March 2016 00:10:33(UTC)
Hi Rosy,

Just to let you know I care. I can't give any advice but just pray that things will be better for you both.

Steve x
User
Posted 10 March 2016 00:49:56(UTC)

Rosy, treatment happened in a different order but Devonmaid's husband has done really well on Stilboestrol I think - have a look at her profile.

Stay brave and don't forget to look after yourself in all this

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 10 March 2016 10:35:28(UTC)
Rosy
Like Julie I hear you. I'm glad your OH is back at home but how weird that the ward consultant should go against the directive given by the Oncology team on the transfusion units.

DevonMaid's Husband has been on Silboestrol for quite a long time now, it is one of the older generation HTs but in some cases it works well with less SEs. I'm sure when she reads your update she will tell you more.
Im glad to read that you were able to decide to go home for the night and get a much deserved break. That is such a hard thing to do but sometimes totally necessary.

Thinking of you
xx
Mo
Thanked 1 time
User
Posted 19 March 2016 00:35:31(UTC)

A difficult couple of days with my feelings ranging from confusion, frustration and even anger. Having been much brighter after the last transfusion D has been looking increasingly pale and has become more breathless. I spoke to the chemo nurse yesterday and she said to get a blood test urgently which she would check that afternoon and sort out a transfusion. Having rushed round to get him up and myself ready she then phoned back and unusually he picked up the phone. He said that she'd talked to the consultant who'd said NOT to have a blood test, there were no slots for transfusions anyway and that she's referred him to the hospice. David is a man of few words and I couldn't get any more out of him. Today he was much more breathless so I phoned the hospice nurse.

He was as confused as me about David being given stilboestrol as he like me thought that there were no other options after Abi in David's situation. His feeling was that this was the beginning of a transfer to hospice services which is what I had suspected. He also suspected that the stilboestrol was a shot in the dark and not really expected to make much difference. I am not very happy that this has all happened second hand and that the consultant has not shared her reasoning directly with us for the new medication, the halt on transfusions and the hospice referral.  I know this has all happened between appointments with her but she was around when we were at the hospital last week. We don't see her again before 4th April. Somewhere there has been a breakdown in communication, I've always quite liked the consultant but I've felt quite upset about all this. David has been quite passive about it all.

However I am very happy with with the hospice response - they are going to arrange an assessment with one of their doctors next week and can organise transfusions as needed. The nurse talked to me for ages and although it was bad news I felt better for his honesty and support. He did feel though that we were talking weeks now. So hard to try to behave normally knowing that, but David makes it quite clear that he doesn't want to know. His psa was 133 last week and 212 this week!

He has stopped eating again - one banana and 3 Ensure drinks a day - and he is drinking less. Even his voice is much quieter when he does speak which is not much. Tonight I really struggled to get him off the sofa and upstairs. I think we may be approaching a bed downstairs very soon. After struggling up the stairs tonight his hands and feet had a definite bluish tinge.

Then my daughter came home all excited as she'd got the job she really wanted. So at least there's some good news.

I'm feeling very wobbly tonight - thank goodness my mad friend is coming over tomorrow.

Rosy

User
Posted 19 March 2016 01:50:01(UTC)

Rosy, I am so sorry to read your news. If D doesn't want to know how long he has, I assume that there are no plans for him to spend his final days in hospice care and that you will be managing at home? Push for the bed to be ordered and delivered as soon as possible, along with whatever else the hospice staff think will be helpful. It is terrible to suddenly find that the stairs are not possible and have to leave a loved one lying on the sofa for the night because there is no alternative. Also, if you haven't done so already, talk to the hospice staff about financial support that you might be entitled to from the Government - this will help with things like additional carers if you need them but needs to be applied for now as it might take a while for application form to be sorted and processed.

Wonderful news for your daughter xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 19 March 2016 02:09:33(UTC)

He did once say that he didn't want to die in a hospice so I'm assuming he wants to stay at home. It's very difficult with someone who doesn't discuss his thoughts/feelings!

I asked about PIP and carer's allowance today and the hospice are onto it along with a blue badge. All things I've been meaning to do for a while. I will be going onto half pay soon so should have done this sooner.

I will be talking to him about the bed tomorrow. The district nurse mentioned it the other day and although he doesn't really talk about his situation he is open to anything that makes things a bit easier. 

I really don't know what I'd have done without our hospice nurse. He knows exactly what each of us wants to know or not know and responds accordingly. 

Rosy

User
Posted 19 March 2016 07:49:47(UTC)
R

"It's very difficult with someone who doesn't discuss his thoughts/feelings!""

Is there a relative,friend or colleague he might discuss things with, I did not discuss my diagnosis with my wife at first, but I would talk to strangers.

Thinking of you both.

Thanks Chris
User
Posted 19 March 2016 11:01:10(UTC)

Presumably the hospice nurse will have a whole tool bag of skills to gently draw out his preferences, wishes, choices.

I am thinking of you Rosy - don't forget to look after yourself in these coming days and weeks

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 19 March 2016 11:24:30(UTC)
Rosy
I am really sorry that things have gone from bad to worse, I'm not surprised you are feeling angry and confused about the hospital treatment and handling of things either.
The hospice team sound really supportive just as mine were. They really do make a difference.

Lyn is right, the need to push for the help both physical and financial is important now,so it's good to hear that the hospice team are helping you with that. Hopefully they will send someone from their pastoral care team, (usually the Occupational Therapist) to come and talk through all the things David might need to make him as comfortable as possible at home.
They are usually very good at fighting your corner to get a proper care package.

Talking about what lies ahead is not something everyone can or wants to do. Initially I though I was fortunate that Mick did, but sometimes in hindsight I worry about how much that must have hurt him just to make things easier for me.

I think of you often and wish you strength and as much time together as you can possibly get.

All my very best wishes and a massive virtual hug

Xxx
Mo
User
Posted 19 March 2016 13:50:17(UTC)

Thinking of you at this time - do try to get as much assistance as is possible - everyone is so so supportive.  Take care x

User
Posted 19 March 2016 13:58:56(UTC)

Rosy,
My thoughts go out to you. Hard times, when communication is so hard for David. Not sure what words are right, if any. I feel a bit of an imposter,as we don't know each other, yet we have this in common. I've read your postings and I just wanted to say you are both in my thoughts. We have a few friends with illness, my hubby included, hard times for many of us. The internet has allowed this support facility to widen, and our thoughts, feelings and fears to be shared.

If you can, try to take care of yourself.
Leila x

User
Posted 19 March 2016 20:08:06(UTC)
Hi rosy
I'm sorry to see things are not going so well for you. Can only offer my thoughts and a massive hug to. Am glad you have a very supportative hospice nurse and a lovely group of people here to listen to you.
Take care rosy,
Lesley x
User
Posted 19 March 2016 21:20:21(UTC)
Hi Rosy
I'm so sorry, but not that surprised, to read your latest update. I can't believe I missed your earlier post re stillbestrol but I guess this is academic now. I'm pleased to hear that you have hospice support, I really do think they do the personal touch much better than a hospital and you do need them now. If no further treatment is forthcoming then I think a few weeks is about right, but you really never know.

On the subject of stillbestrol, my husband has been on this for 2.5 years and has done brilliantly really, he shouldn't have done well, given his diagnosis but he has. His only bad side effect was boobs, but that's a small price to pay. It's an old form of HT, I would say I have always wondered if it's the aspirin you take with it that's the real wonder drug.

Rosy, the others here have told it like it is, no one knows what to say, but we do try hard to support each other through these difficult times. This is a really difficult time for you both, no question about it. Please know that we are thinking of you and hoping for the best.

With lots of love
Devonmaid xxxx
User
Posted 20 March 2016 01:23:14(UTC)

Thank you all! We received a copy of the latest letter to our GP today which said 'his blood counts and marrow function are nowhere good enough for systemic chemotherapy and I really don't have any other options for him now' - so there it is. A pity it had to be in a letter rather than face to face. He was obviously upset but as ever didn't really say too much.

The plan for the hospice appointment includes trying to tease out of him what he wants, even if that is that he doesn't want to know what's going to happen or to have to make any decisions. I think I will be sitting out of at least some of the appointment - maybe that will help him to open up if he wants to. He has really cut himself off from friends and colleagues but if he does see them he only talks about football, films etc. In the very early days when we were out for a meal with our best friends he opened up for about 5 minutes raising tears all round - then he closed the conversation and said he wasn't going to talk about it again (not because of the tears but because he'd said his piece). And he's held to it!

We have the OT coming on Monday - originally to look at raising the sofa, but I will talk to her about the difficulties with the stairs etc so we can work out the best options. I will be asking about a bed downstairs.

The nice thing today was my friend's visit with so many flowers I needed 2 vases, and a home-made coffee and walnut cake - delicious! Even David had a small slice.

Thank goodness for friends and for this site with such wonderful support from people you have never met!

Rosy

User
Posted 20 March 2016 01:39:14(UTC)

Rosy, I am so, so sorry that you had to read it rather than the oncologist explaining it when you saw her. In one way shocking - you would expect cancer specialists to be trained in having difficult conversations - but on the other hand, maybe she really didn't know for sure until these most recent bloods came back.

The important thing now is to clear as many problems and worries from your head as you possibly can. Getting help to apply for the benefits will ease that although frustrating as you were probably entitled to some financial help months ago. Anything that makes the house more accessible and David more comfortable, and large slices of coffee & hugs cake of course

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


Thanked 1 time
User
Posted 20 March 2016 19:12:07(UTC)

Hello Rosy

 

I have not posted on the forum before, although I have been following a number of the conversations for a few months. My OH is ColU_FC (David), who posts regularly on the site. He has advanced metastatic PC (diagnosed July 2013) and (fingers and toes crossed) his meds are, at the moment, keeping the PC under control. But who knows for how long? We know that at some point we will be where you are now.

 

Reading your posts brings tears to my eyes. You are a very brave lady doing all that you can under these unbearable circumstances. Your honesty in describing what is happening to you and your OH demonstrates so clearly how painful it can be if the sufferers of this awful disease withdraw from or don’t communicate with those who love them. Everybody loses.

 

We all want to help and support our husbands/partners/friends in whatever way is best for them. Your posts have reminded us how vital communication is in making this possible. Thank you.

 

Take care of yourself Rosy. Our thoughts are with you.

 

Linda

User
Posted 20 March 2016 20:31:06(UTC)

Hello Rosy - like the others who have written to you I am so sorry to hear the news - I am thinking of you and do share something in that my other half does not open up at all and will not discuss his feelings - so frustrating but you will know all about that I guess !  Anyway, enough of me - thank goodness for good friends and will close now wishing you well - with all good wishes and much love xx

User
Posted 20 March 2016 22:16:48(UTC)
Hi Rosy,
From one wife to another who's OH doesn't want too or can't talk about things I so totally understand where you are coming from. From my own perspective we have not always agreed on decisions but they have been made together and to know suddenly to have to make the most important choices alone is pretty scary. I have fought against it for nearly 3 years and I have had time to accept and come to terms that Trevor can't not won't talk about his disease and the end game.
I am sure that like me that you will make all of the right choices for David when the time comes, there is no hand book is there and no instruction manual we just have to go with what is in our heart.
To have heard the news that you did in a letter is so wrong although you probably already knew to see it in black and white and not had first hand contact with your onco is outrageous. We all need a human touch at these times.
Stay as strong as you can, although only virtual friends we are all here , all understanding and feeling your pain.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 March 2016 00:52:30(UTC)

Please forgive me for posting so frequently but it sort of helps put my thoughts in order and is so nice to know I'm not the only one having communication problems. If I am boring anyone or making them uncomfortable please do ignore me!

This afternoon I really didn't know whether to laugh or cry...

This morning D had a fall in the bathroom - we managed to get him up and he was unhurt apart from of course his dignity. After several minutes of thought he agreed to my helping him with his shower, then with drying and dressing him. This was very significant as I haven't actually seen him completely naked for about a year now - he has been so self concious about the changes the hormones have made to his body, not that it's bothered me but it has for him. The fall obviously shook him up a lot and a couple of hours later he started to speak.

D - 'I've been thinking.... (pause) - I've decided......(another pause) - I want to.....(long pause)

At this point I am on the edge of my seat thinking he is finally going to talk about how he feels or what he wants - then..

D - 'I'm going to leave the bathroom door unlocked in future' 

Me out loud - Yes I think that's a good idea and I will come and help you if you want me to. 

Me to myself - I need a large G&T or three.

As the days pass he is more withdrawn and uncommunicative. Sometimes it seems it is to much effort to answer simple questions such as 'do you want a cup of tea'. Other times he talks quite normally and interacts with whatever is on TV. He always gets several pointless answers when we watch Pointless! Over the last few days I am noticing that his attention is wandering and he looks to be in deep thought. It is quite painful to watch and I do wish he would talk a bit but on the other hand I do take on board what Mo says. He has to do it his way but it's so hard as Julie says trying to make the right decisions on your own. What wise people there are on this site!

Anyway I feel better now for putting it down in print. I'm sure someone will suggest that he may be depressed which I think he is but wouldn't admit to. He is on an antidepressant for it's appetite enhancing properties (which isn't working!).

Fingers crossed for an early appointment with the hospice doctor. Now where's that bottle of gin?? I've had just one alcoholic drink since Christmas because I've been worried that if I drink and he is unwell I won't be able to drive him to hospital and I'm the only driver. But my daughter had her first driving lesson today.. 

Rosy 

Thanked 1 time
User
Posted 21 March 2016 01:45:02(UTC)

Hi Rosy,

Please write whenever you feel you're able to. 

I know how much it helps to write how you feel and we are all here reading your posts but sometimes finding it difficult to know what to write in reply.  I wish there was something I could say to make you feel better at this time.  It must be so difficult when D is finding it hard to share his feelings with you.  I hope he finds a way to do this. 

I just wanted to let you know I care.

Steve x

User
Posted 21 March 2016 09:21:25(UTC)

Rosy, regarding the comment about whether he is depressed. In my work i often say that depression is when someone is in a deep dark hole but can't really identify a reason or cause. In D's case, there is a very obvious reason for feeling very sad and frightened. So not depressed perhaps; sad, grieving, fearful might be better words?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 21 March 2016 09:24:39(UTC)


Never ever feel it necessary to apologise Rosy (or anyone else for that matter)

We mostly are virtual friends and for that reason we can't be there with the helping hand or the much needed hug but that doesn't mean we can't wish we were.

My own husband is a non communicator too, but has mainly always been like that and it has caused problems in the past.
I'd like to think that if we are ever in your shoes I will be as patient as you are but I'm not sure I could be.

Putting things down on paper does help, even if you then tear the paper up or delete what you've typed. It helps put things in perspective.

You know from reading other people's post that you are not alone in your situation and those people will understand completely what life is like for you - for others like myself it has to be imagined.

I think about you both often and hope that your hospice will follow the wonderful pattern that they were set up for.

They will help you I'm sure. Your husband may well find he can offload his fears to a "stranger". I hope so anyway.

We can't control the winds - but we can adjust our sails
User
Posted 21 March 2016 09:25:29(UTC)

Welcome to the forum JackieJones and Linda

We can't control the winds - but we can adjust our sails
User
Posted 21 March 2016 19:27:12(UTC)

Thank you for the welcome.  It is appreciated.  Feel so sorry for what Rosy is going through.  This is quite new to me - I find it helpful to chat like this, so thank you again for the welcome.

User
Posted 21 March 2016 19:30:07(UTC)
Hi Rosy

First things first, never feel the need to apologise for posting on here. I had many times when Mick was in hospital and then the hospice when I would come home (after a whole day of being with him) to a kind of emptiness I had never experienced before. This forum kept me going in a way that family and friends could not quite do, they were all there for me but it was that missing understanding, the people on here who could be empathetic without needing to feel sympathetic the people who quite simply "just got it" the ones who were here with me. So anytime you feel the need you just pour it all out, venting really does help. One thing my wonderful step daughter did for me was to be the communicator with a lot of my family and friends, Whenever there was news or information that she felt needed to be shared she would handle it. I think she knew that me saying the same thing to 15 or 20 people was just too much. I also have a group of close friends who all live overseas I would keep them informed every week or so through a secure closed group on e mail. I often read their responses to Mick as he loved keepng in touch with them all.

I also know how valuable it is when a friend pitches up for a chat and brings cake or flowers or anything. In the absence of that there will always be virtual hugs from the people here.

By the time you read this you should have had your OT visit, hopefully you will now have a load of things that should make everything more comfortable for David.

I know the bathroom door conversation seems like a minor thing but it is a start, I hope I do not sound patronising if I say, please try and get him to use a walking stick or similar, they really help in balance and as a thing to lean on for a little more leverage. Any fall at this stage can be a major issue. When Mick was still able to walk he actually had two, on bad days once he was up and moving he would deposit the second one by his chair and at bedtime I would take it and put it with the one by his bedside.

I think of you often and if I have a G&T later I will imagine you having one too.

All my very best wishes
xxx
Mo
User
Posted 21 March 2016 20:43:39(UTC)

Dear Rosy,

I know I haven;t spoken to you before, but I wanted to send you and D much love. I feel immensely for you both.

With all best wishes xxx

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 21 March 2016 21:28:54(UTC)
Oh Rosy,
Please never feel that you are posting too much sometimes in life we all need help it doesn't matter how or where we get that help. We are all here in different ways to help support you. On the old forum there was a how many people had read your post section and I was always amazed at how many read my posts this is something I would like to see reintroduced.
When the chips are down some in fact most people don't know what to say I get that and I am sure if they realised that just saying Hi Thinking of You is enough, that can just be what we need .
Just loved your he said , I said with D I can't tell you how many times I have thought this is it ,this is the time that T is going to open up and talk and then he says something so practicle that I am just left dumbfounded.
I often think the old adage that women are from Venus and Men are from Mars is so true, give a man a problem and he looks for an answer to solve it , give a woman a problem and she talks about it and talks about it, and talks about it๐Ÿ˜Œ.
The trouble is us lady's always hope , want and expect our men to suddenly turn into women and want to start talking, some do but an awful lot don't . It seems that like you an me have got ones that don't. I am with you thow Rosy I will never give up hope.
Love Julie. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 March 2016 21:58:41(UTC)
Hi Rosy,

I don't think the "men not wanting to talk" bit that Julie mentioned, hasn't really applied to me, perhaps the hormone treatment is too effective in my case. I think talking can be a big help though even if it may get you into trouble sometimes. I have worked in the media for over 40 years and media people, emergency services staff, firemen and the like are well known for their unusual sense of humour. Even when I was having my heart attack, I made a couple of jokes, which my wife didn't see the funny side of but it was and has always been my defence mechanism to try and escape the fear I was really feeling.

I really hope D finds a way to express his feelings, it would help you both. You are a very brave person but you deserve support too.

Steve x
User
Posted 21 March 2016 23:44:39(UTC)

Well it was all a bit chaotic today as the OT arrived at the same time as the District Nurse who was here to take bloods. But she couldn't access a vein so called a colleague and they were all trying to talk at once.. No wonder he got a bit tetchy.

He agreed to a swivelling bath seat and a second handrail for the stairs but flatly refused a bed downstairs. This is the first time in ages that he has voiced a definite opinion so we will respect it unless things get worse when we'll have to raise it again. He has a stick and a frame around the loo which he finds helpful.

The PIP and blue badge are now applied for and the GP phoned to re-assess his medication. Then the hospice nurse phoned with an appointment for Wed with their consultant - so lots achieved today!

He is incredibly pale and dozy today so I will phone for blood results in the morning and hope a transfusion is forthcoming. 

Steve - you raised something which I am really missing. He is an ex policeman and had a very good (and black) sense of humour. It seems to have completely disappeared which is so sad. We do have loads of videos/DVDs of jokes and pranks he used to set up thank goodness but it would be so nice to see him like that again.

Mo - I am sitting here drinking a G&T in the disguise of a mug of tea with you. Cheers!

Rosy

Thanked 2 times
User
Posted 22 March 2016 08:47:36(UTC)

Glad you got some positive results yesterday Rosy.

Every little helps doesn't it

We can't control the winds - but we can adjust our sails
User
Posted 22 March 2016 20:22:02(UTC)
It sounds like you did get a lot done today Rosy, we had a second bannister rail put in and it made a huge difference. We have rails in the shower and bath because my OH is often unsteady and in danger of falling. He often uses a stick too, but he has one with a skull for the head bit, his military humour coming out there. My OH doesn't say much but he isn't as reticent as yours. He's had 5 years to thaw out a bit and become a bit more forthcoming, we discussed end of life choices (both of us) etc early on in this journey, so we don't need to discuss that now, thank goodness.

I'm hoping the hospice staff will be able to talk to him and get him to open up a bit, when we had a bad do a couple of years back our local hospice staff talked very openly on a one to one basis with J. I'm sure it helped him to be more open with me.

I would join you in a G&T tonight as we've had some bad news about my brother but decided to keep to the green tea on the bass that I'd never have just the one. Anyway drinking alone is never good, my OH doesn't drink these days.

We are all here to support you, I'm so glad you can post here, I think it must be so difficult if you can't vent somewhere. I keep my thread up to date, partly as a means of recording the passage of the disease for us, even if no one reads it, I'm recording things that matter to me.

Cheers Rosy
Xxx

User
Posted 23 March 2016 21:46:56(UTC)

Rosy you are in my thoughts daily, you are such a strong and brave lady, I read your post and without fail they always bring a tear to me eye, but I must say that the lock on the bathroom door brought a smile to my face.

Keep strong always Michelle xx

User
Posted 23 March 2016 23:13:42(UTC)

Well today I feel like I've been run over by a steam roller.

D was quite poorly yesterday and we learned that his Hb was back down to 7.9 and his platelets are very low too. Today I couldn't get him up for his appointment at the hospice. He just sat on the edge of the bed falling asleep. I called the hospice and they sent the doctor to us instead - what a wonderful service.

He had a transfusion booked for tomorrow and so needed a cross match today at a hospital 45 minutes drive away. The doctor tried very tactfully to persuade him that he wasn't well enough to travel there and that perhaps his symptoms were related to disease progression. He wasn't hearing her and insisted he wanted the blood. He then fell asleep again. On her advice when he woke later I told him that if he wanted the blood we would have to go by ambulance to A&E. He fell asleep again.

He slept all day and then at 5pm insisted on coming downstairs which was very precarious! He then slept on the sofa all evening till my daughter and I struggled to get him back up to bed. I have never seen anyone so breathless - it was awful. Tomorrow I am ordering the bed for downstairs and he will have to stay upstairs until it arrives.

He has eaten nothing, not even an Ensure drink. He has barely spoken (he's been asleep) but when he has it has often been quite incoherent. The phone hasn't stopped ringing - the GP, the hospital, the pharmacist etc etc. Oh and someone who wanted to fix the extra bannister rail but I put him off as I think it's too late now.

We now have a DNR form signed and at hand and a pack of end of life drugs here. The doctor thought maybe a couple of weeks but I wonder if he'll make that long as he seems to have deteriorated so rapidly today. Although I knew it was happening it's still come as a real shock.

I am so grateful for all the kind thoughts - it helps so much

Rosy

User
Posted 23 March 2016 23:34:42(UTC)
Rosy

Just to say we are thinking of you both.

Thanks Chris
User
Posted 24 March 2016 01:18:46(UTC)

There is something amazing about the human body. As the end draws near, the body knows it no longer needs to eat or drink and stops sending those messages to the brain. In response, the brain begins to produce a natural pain killer / relaxant. Sometimes there is a very bright phase, even when someone has slept for days and stopped communicating, they might become very aware and chat, see visitors, etc. but more of the time they sleep. Every time I have been in your situation I have noticed certain things - staring at something I can't see or at a fixed point, fingers constantly picking at the bedding or clothing, things like that. The most distressing thing is when the person suddenly seems desperately thirsty but refuses to drink - I remember sobbing over my mum because she was licking her lips all the time or opening her mouth like she really needed water but then closing her lips firmly as soon as I tried to lift a cup or sponge to her. The nurses reassured me that these behaviours are unconscious reflexes and the person isn't feeling thirst.

I don't know why I am telling you this, you are a nurse! Just to say, I suppose, that I remember every moment and I am thinking of you x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 24 March 2016 05:36:45(UTC)
Ho rosy
Thinking of you both

Regards
Nidge
run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 24 March 2016 06:18:18(UTC)

Sadly David passed away just before 4 am. He became increasingly breathless and distressed so we had to call an ambulance and he died shortly after arriving at the hospital.

We will miss him so much

Rosy

User
Posted 24 March 2016 06:56:43(UTC)
Rosy

I am so sorry and saddened to hear of your loss.

Thanks Chris
 
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