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User

Posted 03 Jan 2016 at 11:07

Rosy

as others have said to hell with the diet, Mick had 3 or 4 favourite things that he would eat, (bearing in mind he was also a Mody diabetic with a blood sugar level that bounced from below 2 to over 40 on a regular basis)

Ice cream, egg custard (no pastry) bacon butties (go easy on the bread and heavy on the bacon) and mashed potato with onion gravy (coz Northern boys like gravy) Eating all or any of these made him happy so it made me happy too.

If the blood transfusions continue to help that is good, but do be prepared for the length of that benefit to get shorter and probably less effective. You will know from your own working experience that things can deteriorate suddenly as Fiona has said.

Mick had always said he wanted to be in the hospice at the end of life, he had his reasons for that but he changed hs mind quite suddenly. Thank goodness that with a lot of help from our hospice team, we managed to get him home. There are many things that we discussed openly throughout his year long battle and a lot of things we prepared for too. I wrote about that in a conversation on here a while after his death, it is called Elephants and their part in a dignified death ... if you feel up to it look for it and read it. There might be some things in there that will help in some small way.

You are in my thoughts and if you ever want to ask anything at all about what you are facing away from the public forum , then you are more than welcome to private message me. I will always answer as honestly as I can, after all this is no time for anything less.

My heartfelt best wishes

User

Posted 04 Jan 2016 at 02:57

Here I am one minute terrified that he looks so ill and is this it, and the next thinking that I'm overreacting because we're sat watching TV together and he seems quite normal! But then 'normal' has changed considerably over the last year and a half. It amazes me that our brains allow us to normalise such difficult situations.

We had a horrible incident today. He slept very late after a bad night then came downstairs and slept on the sofa until early evening when he woke drenched in sweat. He decided he would like a bath which I ran for him and thank goodness listened to me when I said not to lock the bathroom door. I told him to call me if he needed me and after checking he was ok a couple of times, eventually he did. He was sat in the empty bath in tears because he couldn't get himself out. It took several attempts to help him to stand up - I was on the point of having to call my daughter to help which upset even more - obviously. But eventually we managed but he was distraught. The one thing he has been most upset about through his illness is the loss of dignity and this was like the last straw.

Showers only from now on! He was much brighter as the evening went on but this really knocked him.

On another note - I have tried to 'follow' other members with similar stories but although I'm shown as following them on their profiles they don't show on the community home page. What am I doing wrong?

Rosy

Edited by member 04 Jan 2016 at 02:59 | Reason: Not specified

User

Posted 04 Jan 2016 at 05:31

hi rosy
I feel for you and hubby this is just something else he has lost to this disease, it just seems to nibble away at everything we have been able to do, good you have the option of using a shower, I can imagine his despair at sending for your daughter to help, and as you say normal has changed for us all, somedays it seems to change a lot either way
is it not possable to take the lock off the bathroom door just in case hubby forgets and locks it
regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 04 Jan 2016 at 09:12

A horrible situation Rosy and I do feel for you.

Re the bathroom lock, we have the sort that locks from inside as usual but has a slot on the outside handle that can be opened with the flat key supplied or a coin or screwdriver.

It gives the feeling of privacy but allows access in the case of urgent need. It's a simple job (as I remember) of removing the current one and replacing with the new.

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

User

Posted 04 Jan 2016 at 09:38

Rosy

I have PMd you,

User

Posted 04 Jan 2016 at 12:42

Rosy

Hi again

I am not the most technical person using this website. I think that I, like a lot of other people tend to use the recent conversations facility to keep up with what is going on.

If you set up to follow a person's conversation that should appear when you log back in ..the response to your login will bring up a screen that says welcome back Rosy. Under that there will be the list of potential topics, then scroll down and you should find conversations you follow. They should be in there. Below that there are the most popular conversations. I have no idea of the criteria that get them up there.

If you stay logged in then that sub section will not appear on the community home screen.

I am sure one of the more technically minded people will come back and give you a simpler or better answer.

xxx

User

Posted 04 Jan 2016 at 12:52

Thanks.I've just talked through all the symptoms of SCC with him and he says it is just general muscle weakness which has gradually got worse partly I'm sure due to inactivity. I've stressed the importance of acting quickly if he has any new symptoms. He responded by suggesting we go for a wander round Sainsburys after a bacon sarnie!

Perhaps I got the 'follow' thing wrong. I selected to follow people rather than conversations. Can't write much now as I'm using my phone and it's too fiddly! Now to make the bacon sarnies.

Many thanks

Liz

User

Posted 04 Jan 2016 at 13:41

How I love his attitude.

His desire for a home made Sainsbury bacon sarnie made me smile. It is the little things in life that work.

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

User

Posted 04 Jan 2016 at 14:15

Just one tongue in cheek question... Is it actually possible to cook a bacon sarnie for someone and to not want one yourself??? New Year resolution - watch my diet!

Rosy

User

Posted 04 Jan 2016 at 14:22

Bacon sarnies made me smile
Cant remember last time i had one

Edited by member 04 Jan 2016 at 14:23 | Reason: Not specified

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 04 Jan 2016 at 16:25

Rosy

In earlier posts and indeed in the title of your convesation you asked if your Husband was coming to the end. Has anyone in your medical team actually told you that this is the case? I had not realised that David was still being given Abiraterone. I'm sorry I missed that piece of information as that could put a slightly different perspective on things.

There is no hard and fast definition on the change in status from receiving palliative care to receiving end of life care. However in very general terms end of life care is when no other disease specific treatments are considered to be working so they are stopped. Only life sustaining treatments like blood transfusions, antibiotics, pain management drugs, steroids etc. are normally prescribed.

Another phrase I have seen used is "a progressive decline in well being leading to a near future end of life is anticipated." Sometimes as well at this stage a patient and/or their family might be asked about a DNR notation.

Maybe, and it seems imortant that you know, you can have a quiet word with David's Oncologist and ask what his current prognosis is.

Right now it seems that David is certainly having some very dark days which is most understandable. His own state of mind might be giving you the anxiety that things are moving quicker than they actually are.

If he feels well enough and is physically capable of going for a walk round Sainsburys then that is terrific. Encourage him to do something every day if he feels up to it and enjoy that time together.

I am with you on the bacon butty front, the smell of cooking bacon is just an absolute diet breaker for me ...chocolate and sweet things I can ignore happily but savoury things and wine will always be my dieting downfall. With that I shall return to the kitchen to make my 4th salad of the New Year.

I will be thinking of you.

User

Posted 05 Jan 2016 at 09:24

My reason for asking the original question was because of the anaemia and presumed bone marrow infiltration. We both felt that the last appointment with the consultant was slightly uninformative - he had been given an additional appointment because of the recurrent anaemia. She said that the bone scan showed spread and that 'all his bones were affected'. She then offered the referral to the haematologist to see what the reason was for the anaemia. She also said that he would no longer be eligible for the Radium treatment which she had previously mentioned because of the anaemia. I think we both felt that something had been left unsaid.

When we received a copy of the letter from her to the haematologist she had said that his bone scan was a 'superscan' and that she assumed bone marrow infiltration. Neither of which did she tell us at our appointment.

The haematologist said there were 3 possible causes for the anaemia. 1. Premature death of blood cells was unlikely as his bilirubin level was normal. 2. Deficiency of iron, folic acid etc - he would phone us that afternoon if this showed on the blood results - he didn't phone. 3. Bone marrow infiltration - nothing he could do apart from blood transfusions and whatever treatment the oncologists could offer.

David started on the Abiraterone in September when it became clear that his psa was rising during the last couple of doses of Docetaxel. After a month it dropped from 34 to 19 but a month later it was 20. He has become gradually less well on the Abiraterone and I think we both assume that it is not working or if it is, it is not improving his quality of life.

Whether due to the cancer or the anaemia, he has less and less energy and his appetite is generally very poor. Yesterday the blood from Saturday seemed to kick in and he was able to have a short wander round Sainsbury's with me - the first time he has left the house since the pre Christmas gin shopping trip, apart from hospital appointments.

While he was having blood before Christmas I had a long chat with the hospice nurse. He said that there was a time when the 'numbers' are no longer relevant. His opinion was that the 'superscan' and the persistent anaemia 'did not bode well'. We discussed the possibility of him contacting the consultant to ask her to give us a better idea of where we stand. I was a bit hesitant about this as I didn't want to press her into telling David something he didn't need to hear yet just because I want to know.

Our appointment is next week so then we will know the latest psa. She has not yet mentioned enzalutamide which I will ask about. Also she had previously mentioned 2nd line chemo but I think this is very unlikely to be an option with the anaemia.

My original question still stands as I don't know how long someone can go on being totally dependent on blood transfusions, especially as these do not raise his Hb as much as expected and post transfusion his Hb drops again so quickly.

If we follow the 'normal for now' pattern, he will be a little livelier for a few days and then gradually more lethargic until the next transfusion.

Rosy

User

Posted 05 Jan 2016 at 10:06

Rosy

I hope you did not think I was questioning your reason for posting, not at all, I totally understand that this possible transition from palliative to EOL care is badly communicated either by literature or sometimes by medical staff.

From what you have said on the Anaemia you have had no positive answer from anyone if this actually is bone marrow infiltration or one of the other possible causes. The answer to that will give you more idea on what is going to happen with the blood transfusions. If it is due to the extensive mets then it is unlikely that David's Hb will improve unaided.

The blood transfusons can be given for a long time if other medications are holding further progression back. The usual problem with long term transfusions if the PCa continues to worsen, is that they become less effective and so any benefit becomes short lived.

This is why I have said please enjoy each and every day that David does feel a bit better.

There is very little guidance on how much quality of life rules over quantity of life. If David is reluctant to talk about this then there is very little you can do other than just be there with him and support him in any way that you can.

It is also very difficult to get information that you do not want David to hear, maybe because he does not want to know. I struggled with that at first and decided that it would be impossible for me to be told and not keep it from showing or from slipping out in conversation. After a while I just knew from what I was seeing and what I heard the medical team saying and I am sure Mick did too although he never let on.

Has David been having Denusomab injections or Zometa infusions to try and keep up bone srength?

best wishes

User

Posted 06 Jan 2016 at 00:48

No it's fine. I think my problem is that I doubt my own my own judgement - it was just quite helpful to summarise what's been happening and what we've been told (or not told!).

I sometimes get the feeling that we are being given information through hints and drip feeding. For instance at our last appointment with the chemo nurse for the Abiraterone she discussed possible reasons for the anaemia. She went through a list of possibilities finally ending with bone marrow infiltration. I got a strong feeling that she was repeating a discussion perhaps from an MDT meeting. Then I wonder if I am imagining things and that being a nurse is not always a good thing especially in an unfamiliar area!

I do just feel so confused about where we are at. He came shopping with me yesterday and was ok but found it tiring. Today he slept on and off most of the day and was sick mid bacon sarnie. He never seems now to have a day when he feels ok all day and feels so unwell as the anaemia progresses. When he's laughing at something on TV I think I'm exaggerating how unwell he is but then when he's very anaemic he looks so ill I worry that we are nearing the end.

I held off going sick from work because I worried that he would think it meant he was nearing the end. But now I have been off for nearly 3 months and wonder what to do. He is not well enough to leave all day. He is usually in bed till lunchtime / mid afternoon and wouldn't bother about food or drinks if I wasn't there. Work have been very supportive and I can have another 3 months on full pay and then 6 months on half pay. Not sure what effect this will have on my pension - that's something I need to check out.

Yes he did have Zoledronic acid for about a year but it was stopped after he had a bout of severe jaw pain in September. An xray showed no problems and he wondered if it was due to some over enthusiastic singing when he saw a Beatles tribute band!! That was his last social outing.

Mo - I hope you're enjoying your salads. Afraid I'm still 'tidying up' chocs from Christmas!

Rosy

Edited by member 06 Jan 2016 at 00:56 | Reason: Not specified

User

Posted 06 Jan 2016 at 06:52

Hi Rosy.

Sorry you feel a bit at sea.

As far as pensions go I'm pretty sure you can top them up, well you could in my day so maybe think in terms of putting that money aside whilst you are still on full pay so that it doesn't hit too hard when payment time comes.

Everyone is different but if I was in your shoes I would be wanting to spend that time with John. If finances aren't a major issue at present then perhaps stay home for now. (Although I do appreciate that with your husband sleeping/resting a lot you must have plenty of empty time on your hands)

If you went back to work you wouldn't be giving them value for money because you wouldn't be concentrating on the job.

As far as "tidying" up the Christmas chocs, well the diet will have to wait for us too. I'm not a big chocolate or Christmas cake eater, even though I made the cake, but sweets and biscuits!! Well that's a different matter.

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

User

Posted 12 Jan 2016 at 01:34

Well we had our appointment with the consultant today and I guess I now have the answers to my questions. Though not the ones I wanted!

PSA creeping up again - now 23. Was 34 pre Abiraterone and went down to 19 after the first month. ALP was in the 400's - now 330 which I guess is better but it had gone down to 217. Hb 8.7 - consultant not very happy with this as it had been 8 before he had 2 units of blood 9 days ago, so it's not rising nearly as much as it should.

Radium is not an option as you have to have a decent Hb, the same with further chemo. Enzolutamide is not an option - apparently it is an either/or for enzo or abbi. I think this is a NICE decision. She said she could try him on very low dose chemo weekly but wasn't very optimistic about it. So - continue with abbi for the time being and have blood when he feels he needs it rather than solely focussing on the Hb.

Prednisolone dose increased slightly to try to stimulate his appetite and something to help with the sweats but I can't remember the name. He already has tablets for the intermittent nausea and vomiting. She did ask if we were in contact with the hospice nurses re symptom control.

While we were waiting for his tablets in the waiting room we noticed she had put the wrong date of birth on his prescription. He asked me to go and ask her to change it. So purely by chance I got a moment with her on my own and asked her what she thought of his situation. She said it was not good and that he probably had about 6 months but then said that it could be 3 months as his symptoms were progressing.

I have not shared this conversation with him. He is clear that things are progressing and his options are very limited, but has been fairly up beat this evening. I'm not sure it was a good idea to ask her but I knew I was unlikely to have another opportunity to ask. I've done it now though - can't undo it.

So I guess we just wait and watch now and take it as it comes.

Rosy

User

Posted 12 Jan 2016 at 06:24

hi rosy
as you say not the results you where hoping for, as for hubby and his prognosis would it not be an idea to suggest that he may want to know what the hospital thinks, then it would give him time to try and do anything he may want to, as I would hate to think you would regret knowing at a later date and not said anything, but their again he may have worked it out for himself.
if it is the case of 6months then I am sure you would like to do as much togeather as possable
me personally I would like to know it was one of my question when I was diagnosed

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 12 Jan 2016 at 09:14

Ah Rosy. What an answer to have. You can't undo the conversation you had with the consultant and, who knows, if you hadn't had it then at some stage in the future you may have been saying if only I'd asked earlier.

Well,it's not all up in the air now is it, you have at least a good idea of when.

It's good that he is upbeat at the moment and with more frequent blood transfusions as and when he feels he need them he may perk up a bit more. Fingers crossed.

You already know that every minute of every day is precious.

IF he really would prefer not to know then that has to be better for him. Could he just be protecting you though do you think ?

Anyway, you and he are in my thoughts.

Best wishes
Sandra

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

User

Posted 12 Jan 2016 at 14:32

Hi Rosy

that must have been one hell of a tough day, my thoughts really are with you.

So, now you have got a fairly definitive answer, obviously nothing like the one you would have prefered but now you know what lies ahead. I cannot lie it is a really hard position to be in. Mick did not want to know either and once I realised how bad things were, (probably about where you are now) I had to think really carefully about the way I would handle things.

I decided that every conversation regarding his cancer, his treatment and his care would be left open for him to ask anything, but I would not raise issues, just discuss the ones he raised. I found it very difficult to become a listener and to be reactive when my whole life I had been the opposite!

I am certain that Mick new the score but by not making it a direct topic of conversation he could tailor his words and step gently around any issues, he probably got the answers he needed from implication alone. The hospice staff also helped loads as they would talk very carefully with him during his care and gently guided the conversations with him.

I guess it is a bit like if I dont say it out loud it won't happen , or if I can't see the bad things then they can't really be happening.

With regards to treatments then I have heard it said that Abbi and Enza seem to work very much alike, if one fails then it is highly unlikely that the other will work. I do know of at least one person who has switched from one to the other but that was before there was any sign of the original failing. Yes NICE guidelines on this in the NHS sector are quite specific.

Your Onco is probably very reluctant to go with chemo even on a weaker but more frequent basis if it will not really give benefits to outweigh the QOL issues. An Hb below 9 will mean extreme fatigue and tiredness already and chemo will probably make that even worse.

She is continuing to prescribe Abbi and upping the steroids for a while to try and boost his apetite. Sometimes, just occasionally, patients can rally for a while and that prognosis can lengthen. I hope for your sake this happens for you.

Meanwhile all you can do is be there with him every step of the way. At the same time remember to get some quality time for yourself too, a totally exhausted carer is not a good carer as I am sure you already know from your vocational experience.

No doubt there will be some dark days ahead but there can also be some really joyous ones too, so make the very most out of every good moment and try not to dwell on the darker ones.

We are all here for you anytime you need us

all my very best wishes

User

Posted 12 Jan 2016 at 15:47

Hi rosy

What a crap day for you.

As a complete outsider looking in, and reading whAt you have written in the past few weeks, the impression is that your husband doesn't want to know. I also have just as clear an impression that you do want to know.

I shall be thinking of you

Louise X

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