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User
Posted 04 Mar 2016 at 07:21
Thinking of you Rosy. I always come to your link first.

Sending you a hug x

User
Posted 04 Mar 2016 at 07:38
Rosy

Just to let you know we are thinking of you.

Thanks Chris

User
Posted 04 Mar 2016 at 08:07

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

Edited by member 04 Mar 2016 at 08:08  | Reason: Not specified

User
Posted 04 Mar 2016 at 08:23

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 Mar 2016 at 22:59
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 Mar 2016 at 22:45

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

User
Posted 09 Mar 2016 at 07:34
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 me doing the 600 mile Camino de Santiago May 2019

User
Posted 09 Mar 2016 at 09:19
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 Mar 2016 at 09:50

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 Mar 2016 at 11:17

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 Mar 2016 at 22:11
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
User
Posted 09 Mar 2016 at 23:43

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

Edited by member 09 Mar 2016 at 23:47  | Reason: Not specified

User
Posted 10 Mar 2016 at 00:10
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 Mar 2016 at 00:49

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 Mar 2016 at 10:35
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

User
Posted 19 Mar 2016 at 00:35

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 Mar 2016 at 01:50

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 Mar 2016 at 02:09

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 Mar 2016 at 07:49
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 Mar 2016 at 11:01

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

 
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