Are we coming to the end?

User

Posted 19 Mar 2016 at 11:24

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

User

Posted 19 Mar 2016 at 13:50

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 Mar 2016 at 13:58

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 Mar 2016 at 20:08

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 Mar 2016 at 21:20

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 Mar 2016 at 01:23

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

Edited by member 20 Mar 2016 at 01:37 | Reason: Not specified

User

Posted 20 Mar 2016 at 01:39

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

User

Posted 20 Mar 2016 at 19:12

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 Mar 2016 at 20:31

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 Mar 2016 at 22:16

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 Mar 2016 at 00:52

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

User

Posted 21 Mar 2016 at 01:45

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 Mar 2016 at 09:21

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 Mar 2016 at 09:24

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 Mar 2016 at 09:25

Welcome to the forum JackieJones and Linda

We can't control the winds - but we can adjust our sails

User

Posted 21 Mar 2016 at 19:27

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 Mar 2016 at 19:30

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

User

Posted 21 Mar 2016 at 20:43

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 Mar 2016 at 21:28

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 it😌.

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 Mar 2016 at 21:58

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

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