[GcarerParticipant]

Hi Eve,

I'm afraid his long life dream and what he has worked for for all of these years has been shattered and I think this has got a lot to do with it, and the fact he won't be able to see himself sat in a chair doing nothing, would to coin a phrase kill him.

I can only think he has thought about this for a while, and looked at the consequences, and they will not be acceptable to him. He always said when he retired he would not stop, he would carry on with his mountain walking, cycling, swimming, it's just not the life I think he would want to live, I hope he proves me wrong, but he will have to start fighting soon or it will be too late.

I think the only thing that would give him the will to live would be to know he could still do most of the things he used to, and I honestly think he knows this will not be possible.

Thankyou so much for your support, it really helps when you are talking to people who understand, and I wish you and your husband many happy years to come.
Gail xx

[GcarerParticipant]

Hi Eve,

He is in hospital waiting to go onto the hospice, he is having palliative care, he has only just come off all his drips, so if he settles down now and nothing else happens he should be there soon.
He is getting all the support we can give him, also he has a dietician, but he still isn't eating, he's had all the drinks that are available, he has also had the mental health team assess him, they say he is completely sound, this is why I don't know where to go next.
I've also taken food in for him, he just looks at it as though it's alien, he was such an active man doing a very heavy manual job, this must be destroying him, he won't read, basically he doesn't do anything.
He has now chosen to come off chemo, so what can I do.
He has had no quality of life now for six months, I do a daily diary and it's sad when you go back and read what has been going on.
All I can do now is keep supporting him and hope he starts to improve.
Gail x

[GcarerParticipant]

Hi Gill,
Howard has had every kind of build up drink going, he just doesn't seem interested in food or drink.

[GcarerParticipant]

Hi, I think I'm replying to my own message, anyhow, things have really taken a bad turn, Howard won't be going to Macmillan on Wednesday for his chemo, he has lost another stone, he is so weak, all the doctors and nurses involved know of his condition, he will be going into a Hospice probably end of the week.
He really needs help he hasn't eaten a thing for the past four days, and his liquid intake has dropped drastically.
It is so worrying, he sleeps an awful lot, doesn't communicate very much, and has told nurses and doctors he's had enough.
He now says he's not going back on chemo.
Very worried.
Gail xx

[GcarerParticipant]

Hi Mari,
Thankyou for your reply, we have just got back from the Haematologist at Blackpool, they took Howards bloods and pressure, bloods are doing nicely they are coming down, his pressure was a bit low but they weren't worried about that, after this a really nice doctor spoke to Howard he was unable to answer most of her questions, he has really blanked out today, she asked him if he had spoken to anybody since he was diagnosed in January, well I know he hasn't, he hasn't even spoke to me about it, she is now referring him to a psyhcologist, he is now back home in bed fast asleep.
What a day, I am glad he is now wanting to have help, he too is not the type for outside help, but I'm sure it will do him good.
I can't thankyou enough for your support.

Love Gail xx

[GcarerParticipant]

Hi Dai,
Thankyou for your support, I am having a very bad morning with him, he is pacing about, confused, can't keep still, banging his feet, I have got the doctor coming soon, I have been told this could be the dex, he came off it four days ago, but this is the first time this has happened.
I have taken on board what you have been saying, just at the moment isn't the time to be talking to him, he really is so confused and frustrated I would probably make him worse, but I will when we get through this bad patch.
You take care,
Gail

[GcarerParticipant]

Hi Eva,
Howard is on his third cycle, on the trial, I don't think it's the painkillers that are making him like this he has been on them since last October.
I'm not sure about sleeping tablets, he has only been like this for a couple of days, I'm sure it's got to do with his frustration of not being able to do what he used to. He was a very active man before all this, mountaineering, cycling, swimmimg, and a very hard working man until last December, then this raised it's ugly head.
I've not contacted the doctors yet, I just want to observe him for a few days, I'll try and find a time to talk to him and see if we can work through this.
Good to here from you, Gail

[GcarerParticipant]

Hi Gill,
Yes it is hard to take, watching them change, I didn't understand it at first, I thought Howard was just having a go at me, which is not his usual personality.
I am learning slowly, but at the moment I'm finding it very difficult, I am going to have a couple of days break with my daughter, let's hope this recharges my batteries and enables me to keep strong.
Thankyou, good to hear from you.
Take care, Gail xx

[GcarerParticipant]

Hi Teresa,
Not the best of days today, I've finally broke down, far too much to think about, Howard is back on chemo, very confused, asking me what he should be doing all the time.
Our middle daughter came today to see her dad, and I just broke down, she listened to my problems and asked me to go and stay over with her for a couple of days, I have a younger daughter who is capable of looking after her dad so I will probably go for the break.
I'm not sleeping, I'm seeing daylight every night, I think it's time to go to the doctors and get it sorted.
Thankyou for your concern, I hope things are okay with you.
Take care, Gail xx

[GcarerParticipant]

Hi Tom,
Good to hear from you, I am so overwhelmed by the response I have got, I thought I'll give it a go but certainly didn't expect so many replies.
It really is a good site and I'm sure it will help me get through.
You take care.
Love Gail xx

[GcarerParticipant]

Hi Andy,
I really feel for you both, doesn't it just come and hit you. We had just retired and Howard has been building a steel yacht for us to live on, just when we thought we could really get on this happens.
That is the end of his dream, we will have to take a completely different course now, I really feel for him, he has worked so hard all his life to get to his goal, and now that has been crushed.
Well take care, thankyou for your reply.
Love Gail xx

[GcarerParticipant]

Hi Carol,
Yes I will take your advise, I feel when I have to go out I rush round thinking I have to be back quickly.
Howard is never left on his own, so I need to back off a bit and have a coffee and just chill.
We are off to the Macmillan Unit at Blackpool today for his third cycle, could you tell me when they decide he can have SCT.
Thankyou again for your advise, and you take care.
Love Gail xx

[GcarerParticipant]

Hi Carol,
Thankyou for your support, I now feel I have a place to go when the going get's tough. I have had really down moments but you have to stay tough for them, I would never let Howard see how it is affecting me(not just yet anyway)he has enough on his plate at the moment.
I can't thankyou all enough, it looks like I'll be a regular visitor on here.
Love Gail xx

[GcarerParticipant]

Hi,
Thankyou all so very much, I really feel for you all in your different circumstances, as a carer I don't feel I have the right to complain, especially when I have in front of me a very sick man trying so hard to come to terms with his life being put on hold.
I now feel I have a place to come for information, or just to vent my feelings to enable me to carry on.
Thanking you all again.
Gail x

[GcarerParticipant]

Hi Teresa,
Thankyou for your support, I wish I had found this site a lot sooner, It really would of helped with all the frustration, anger, sadness, why us feelings.
Please don't apologise, I got a bit mixed up and posted on both, you take care, and hope to speak to you soon.
Love Gail

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