Are we coming to the end?

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

User

Posted 13 Jan 2016 at 01:27

Hi Rosy
I'm really not sure whether I'd want to know my prognosis or not.
I suppose I'm not really so close to the end though I think.

I can't imagine how it feels for you to have that knowledge and your husband not to and my heart goes out to you. I think though if I were so poorly I would sense I'm close but not like to admit it.

i so hope that the time left is not too painful for you both and that you come through it all ok.

I too will be thinking of you

Paul

Edited by member 13 Jan 2016 at 01:28 | Reason: Not specified

User

Posted 13 Jan 2016 at 22:03

Oh Rosy

What a tough day for you. I think you really did want to know, or you wouldn't have taken that opportunity, though I think you had a good idea of the prognosis. I hope that this news at least makes it more obvious about what to do about work

I know I'll have to face this too, at some point. There's no way to prepare yourself and you can only follow your own path through it. It's very helpful to have generous people like Mo, Zarissa and Carole around to help with the transition, the voice of experience is what we all need at times like this.

Just wanted to send my love.

Allison xx

User

Posted 13 Jan 2016 at 22:51

Thanks for all your replies. It really helps to have support from people who know what it's like.

The last 24 hours have been awful. He started getting generalised pains yesterday evening which got worse despite co-codamol, ibuprofen and MST. At midnight he finally let me call 111. What a joke! First an advisor who couldn't understand why he had bone pain with prostate cancer despite my explanations, then go through it all again with a nurse, then told a doctor will call within 2 hrs. He tried to get some sleep while I waited for the call which came at 1.30am. Then D said that it was easing off a bit so not to bother with the doctor - he would talk to the hospice team in the morning.

Next thing I know is him waking me at 8am to say he hadn't slept all night because of pain and had got a GP appointment booked. After an hour in the waiting room we saw the doctor. Some blood and protein in his urine so possibly a UTI. Antibiotics and Oromorph prescribed. Chemist didn't have Oromorph so I had to drive round to find one that did. Finally at 12md he took co-codamol, ibuprofen and Oromorph together - an hour later no change! Then I phoned the hospice team - now to use paracetamol, ibuprofen and 'Oromorph as often as you need'. A bit later he was sick - sorry to be revolting but there were kidney beans from the chilli we had 36 hours previously! Once his stomach was empty he had some more Oromorph and an anti sickness tablet and finally the pain began to ease.

He still has some discomfort in his lower abdomen, still taking the Oromorph but less distressed. He looks awful and has eaten 2 bananas and an Ensure drink all day! But finally settled in bed and hopefully sleeping. Another worry was that this evening he said he had some difficulty peeing. He has been since with no problem but it is an obvious worry.

As far as him knowing his prognosis he made 2 brief comments yesterday indicating that he knew he was talking in months now. So he does know but chooses not to talk about it which is fine if that's how he wants it. I see that lots of people use sayings - I think David's would be 'I did it my way'

The hospice team will phone tomorrow so I will be asking for someone to come and visit.

To add to all this we have another major family issue which affects, and is affected by D's health. This issue also kicked off again yesterday causing even more stress! No peace for the wicked!

Rosy

One small bonus - I got a letter from our pensions dept saying that if I do go onto half pay due to sickness it will not affect my pension. That's one thing less to worry about.

Edited by member 13 Jan 2016 at 22:56 | Reason: Not specified

User

Posted 13 Jan 2016 at 23:39

Rosy

I hope D knowing his prognosis will ease your situation a little and allow you both to say things you may need too. You are both often in my thoughts.

Thanks Chris

User

Posted 14 Jan 2016 at 03:36

hi rosy
I dont know if you are able to get a number for your cancer hospital I was given a card and told any issues to ring the number on it, have used it once and after I explained how I was went straight to hospital and got checked out, blood, urine and xray all done in 2hours, yep I realise my situation at moment is completly different to yours but its the only thing I can think of to try and help you,my thoughts are with you

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 14 Jan 2016 at 21:15

Hi Rosy

oh my, the horrors of calling 111 came flooding back to me. I guess they have to deal with all sorts of issues and they do eventually get a doctor to call you back when it is necessary. One time when Mick was bad we managed to get him into a special clinic at A&E after calling 111 it meant we had an actual appointment rather than sitting for hours in A&E general.

After that we got an out of hours contact number from our nurse specialist. We never had to use it, but it was nice to know we could.

If D still has identifiable food in his vomit after 36 hours then his stomach is not coping with some things, has he had constipation? I would be worried if he had stomach pain as well as an inability to pee, even if that is intermittent. Certainly worth mentioning to the hospice team.

Of course additional family issues or worries will make every problem so much bigger, sometimes I think the co-related issues feed off each other,making two possibly manageable worries in their own right,one insurmountable one. If you can take them back a stage and try to resolve any bits that you can.

I hope you are able to get lots of things resolved so you can have a restful weekend.

User

Posted 14 Jan 2016 at 22:20

Hi Rosy,

I don't comment much but I do read all of your posts and my heart goes out to your situation, one day we will be where you are know and maybe in the not to distant future.

I wish that I could offer some magic words to make everything fine but I simply can't what I can do is offer a hand for comfort and a listening ear to help ease your heart ache . We are all here to try and help you through this difficult time.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 Jan 2016 at 17:26

Hi Rosy,
My heart breaks for you, I follow all your posts its so hard to hold back my tears, you are in my thoughts on a daily basics, I don't think anyone can say anything to easy the pain, its the hardest thing to do watch someone you love in so much pain. thinking of you both.
Michelle x

User

Posted 18 Jan 2016 at 12:33

Thinking of you Rosy

User

Posted 19 Jan 2016 at 08:56

Not the best week. He had 3 units of blood on Friday which picked him up slightly but he has ongoing muscle weakness so I now have to help him out of bed and off the sofa. He had a relatively pain free few days but then pain in his ribs and shoulder for the last 24 hours and taking frequent Oramorph. Dozing on and off all day. Eating very little but still trying to drink well.

The hospice nurse visited yesterday and was very good with lots of advice and support on the various issues. MST to be increased and some aids such as a cushion as he has a sore backside. He even consented to having a commode delivered as he can't get upstairs easily for the loo. The nurse tried to start of some frank conversation about the future and David was his usual self giving nothing away! Hopefully it will make him think about anything he wants to do.

BUT over the weekend I did manage to raise one very difficult issue and David agreed to me making some arrangements to see someone he thought he would be unable to see. It was one huge elephant out of the room in Mo's words! But he is increasingly uncommunicative which I am finding hard to cope with.

Well we soldier on...........

Rosy

Edited by member 19 Jan 2016 at 08:57 | Reason: Not specified

User

Posted 19 Jan 2016 at 13:38

I am another one that reads your posts without adding anything.

So just to say how I admire your courage and have every respect for you and your family.

All the best.

User

Posted 19 Jan 2016 at 13:43

I read your posts Rosy and feel so lost for you both , as we all do because we are on the same journey. I wish I could beam you some strength and love X
Chris

User

Posted 19 Jan 2016 at 15:00

Hi Rosy

It is really hard when you see your OH struggling with just day to day things. The mind is willing but the body is weak. I know that Mick used to get really frustrated when he needed help to get around but he did come to terms with the fact it was better to get every little bit of help he could to stay mobile.

We managed to get all sorts of little things to help from our district nurse. Mick had a special air pad for his chair it covered the full length of the chair right down to the recliner. It had a special pump to blow the inner bit up and the whole thing went into a navy fleece like cover. He loved it.

He also had two walking sticks sized for his 6'2" frame, these went everywhere with us even on good days. He used them to keep stable as he walked around our bungalow. We had a special air cushion for his bed it was really easy to set up although the nurse helped me initially. It just had to be pumped up every week or so. This and the seat cushion definitely prevented any sore spots from developing.

I bought a special grab handle which I put up in our walk in shower. It was about a tenner on Amazon and although it was only secured with suction cups, once fixed it was very secure. It just gave him a bit more confidence on his feet.

MST is a great drug for pain relief but Mick just found it made him sleepy and nauseous, he went onto Fentanyl patches instead they were so much easier, I am sure they helped to keep any pain to a minimum but with less side effects.

The lack of communication is really hard for you, so many things you would like to talk about or say, withdrawing is a very normal reaction when you know you are very ill. Its kind of hard to want to talk about anything I guess. In that respect I was incredibly fortunate. Mick chatted and joked with anyone and everyone, it took him a little while to truly open up about some things but he did. in some cases just in time, but at least he did. I suppose all you can do is offer as much encouragment to talk as you can, if and when he wants to talk then be there ready to listen.

I am really pleased you managed to evict a big elephant, it takes time to move one of these but every one you manage to move creates more light into the room.

I think of you every day and wish you all the very best

User

Posted 19 Jan 2016 at 15:01

(((((hugs))))))))) Oh Rosy xxxxx

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

User

Posted 19 Jan 2016 at 16:45

Originally Posted by: Online Community Member

I am another one that reads your posts without adding anything.

So just to say how I admire your courage and have every respect for you and your family.

All the best.

Me too. All of the above in spades.

All I can offer is to tell him and show him that you love him. That will help to ease the pain.

David (another one)

User

Posted 19 Jan 2016 at 20:18

Rosy,

Elephants the trouble with Elephants is they are Very Big and if you have ever tried to squeeze one through a normal doorway well you might be able to get the head and trunk through but that rear end (no way it just won't fit) trust me I have tried. I have pushed and pulled squished and shoved if it doesn't want to go then it is not going.

My lovely SS (Edamo) has had Elephant training just another one of her talents she can squeeze an Elephant through a mouse hole but this only happens if the Elephant wants to follow the mouse.

Sometimes it is easier to let the Elephant stay were it wants to be , ok so feeding it is a nightmare ( I have 22 kgs of Elephant feed on the lawn) I won't go down the poop route because that is just horrendous .

Explaining an Elephant in the lounge well this is just my tip but if you don't mention it then visitors are just too embarrassed to say Hay there is an elephant on your sofa.

What I am saying is Elephants are ok they are an endangered species , they have a wonderful sense of family and rumour has it there is a place were they go at the end of there days

Sometimes we and try and change our other halves to see things how we do , to cope with our eyes ( I have done this for the 2 years that Trevor has had this disease) at the end of the day it is his disease and this has taken me a long time to understand, he doesn't want to talk or express his feelings and at long lastI am ok with that.

When it is my turn to tread in his shoes then I hope that my loved ones will listen to me.

So Rosy if your Elephant refuses to budge from your sofa don't despair , Elephants are pretty amazing.

Thinking of you

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Jan 2016 at 01:33

I'm sitting here chuckling at the image of a mountain of elephant food and poop on the lawn! I'd rather the elephant didn't sit on my new sofas though.

You are so right Julie - I haven't managed to change David much in the 40 years we've been together so I guess I have to accept that he has very rarely discussed his feelings or emotions and that's the way he copes. At least I have lots of friends who will listen and support me and intersperse the conversation with appalling black humour which is how I cope.

Mo - the grab handle is a really good idea and I will order one tonight. I will also ask about the Fentanyl patches as he is suffering from nausea. Hopefully this will settle a bit now though as he has been very constipated but the lovely sachets have had their magic effect finally. He was definitely a bit brighter after that. We are expecting a call from the district nurses re equipment. Luckily my best friend is a community matron and advises me on what we can get to help.

We had a nice evening today (once the sachets had worked) with our son who came for the night. David even managed to raise a laugh that I hadn't made his Prostap appointment late enough in the day for him - it's booked for 5.30pm because he struggles so much to get up!

Rosy

Always look on the bright side of life....

Edited by member 20 Jan 2016 at 01:42 | Reason: Not specified

User

Posted 26 Jan 2016 at 09:04

A positive update! For the last week since the change in medication he has improved so much. Eating, sleeping and moving around so much better. On Sunday he suddenly suggested going out for lunch - we couldn't get a table till 3.30 but that was fine and we had a nice time. He said it was hard work once we got home but was glad we'd been out.

I've got the bathroom grab handle and non slip bath mat, and we have the chair cushion, mattress and commode being delivered today following a visit from the district nurse. That was an embarrassing moment as my daughter let her in and showed her upstairs as D was still in bed. Unfortunately I was just stepping out of the bathroom with a towel round me - not a pretty sight!

But we have all this equipment and at the moment he doesn't need it. But it's there for when we do.

The only sobering moment was last night when my brother visited for the first time in a while. He was visibly shocked at how D looked and how much weight he's lost. You don't see it so much when you're with someone every day.

Still we will enjoy the good while it's here!

Rosy

User

Posted 26 Jan 2016 at 09:34

That's great, Rosy,

Just take advantage of the times he is feeling stronger and do things on the spur of the moment. Any little improvement in quality of life is a real bonus. Sending love and hugs,

Fiona. x

User

Posted 26 Jan 2016 at 16:43

Rosy

what a lovely update.

There are good days and as Fiona says make the most out of every single one.

You now sound as though you are well equipped to deal with up and down days with all the kit and caboodle so thats good too.

Dont you just hate it when you get caught by a stranger as you leave the bathroom with that towel that won't quite stay put! I'm sure bath towels have changed in size or they shrink in the wash. It could not posibly be that I have expanded somewhat!

I hope you get to have lots more lunches out and good days like this one.

User

Posted 26 Jan 2016 at 17:01

Rosie, so glad that you are able to take something good on a regular basis from all that is happening around you.

It is also very reassuring that you now have everything in place to use as and when it becomes necessary, well done for being so positive and upbeat.

At least you had a towel to cover your modesty!!

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 26 Jan 2016 at 21:30

Rosy,

What can I say organising us ladies love to organise I know it always makes me feel better. If I am having a bad day then I sort out my hand bag and give me a skip well then I am in heaven.

What I am trying to say is if I am organised then I can cope and I think that you are sounding like you are learning how to cope, it is a big ask isn't it . So glad that you are sorting and coping but mind that handbag sorting when you find that half sucked extra strong mint wrapped in soggy tissue ( and you think how the Feck did that get in there)

Keep going you can do it.😉 You are stronger than you think

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Jan 2016 at 09:15

Yes I feel like I'm pretty well organised. My handbag has had a recent clear out and I too have a house full of shrunken towels!

Rosy

User

Posted 27 Jan 2016 at 09:22

Glad that things are now in place to make future life a little easier for you both Rosy.

When I get fed up with things I too sort out a cupboard. Yesterday I did the one in the hall where every time John opened it stuff fell out. Never occurred to him to tidy it mind you, just comment on it !
I used it for the first time this morning and I couldn't find what I was looking for, in the place it's been for months, and now I have to re-train my brain to think of the new place I put it.

Every day is a bonus for you, every good day is wonderful, I hope you get to enjoy them all.

Best Wishes
Sandra

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

User

Posted 27 Jan 2016 at 10:11

oh if you are all that good then best book you lot in for when we do our house move lol

run long and prosper

'pooh how do you spell love'

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

User

Posted 30 Jan 2016 at 00:07

Hi rosy

I've not been here for a while but came on tonight to see how you were doing. It seems the news is positive this week. I'm pleased you are having a good week.

The bathroom thing is a nightmare. I have this thing about cleaning the bath and shower while I'm in it. I usually do this in the morning after I've dropped the kids at school. On one particular day, I got out of the shower, finished cleaning the bathroom and cleaned the floor. By this time I was dry, discarded the towel, opened the door to walk across the landing to my bedroom and walked slap bang into my husband and the man who had come to fit a carpet. I'm not sure who moved first, but everyone just froze!

Keep on keeping on

Louise x

User

Posted 30 Jan 2016 at 05:29

Well that made me laugh Louise! I do exactly the same thing with bathroom cleaning so I will take note.

All still going well at the moment...

Rosy

User

Posted 09 Feb 2016 at 14:53

Oh s**t!

We have had a very stable couple of weeks with D feeling better although very sleepy all the time except at night!!

Today he had his monthly abi appointment with the nurse. Psa 59. Up from 23 on 11th Jan. That's a 250% rise in 1 month. Alp up to 405 from 330. Weirdly his Hb is more stable at 9.3. It was 8.7 a month ago and he had 3 units of blood.

He has had another blood test today to double check as these results were from Friday.

The nurse is speaking to the consultant this afternoon and will then phone us with the plan of action. Doesn't look very promising. D is as usual now sleeping on the sofa.

Rosy

User

Posted 09 Feb 2016 at 14:57

His initial psa at diagnosis was 48 so this is the highest it's ever been!

The nurse called back to say his Hb today is 8.6. That's a big drop since Friday. So it's cross match tomorrow and blood on Thursday. The consultant has said to continue with the abi. Not convinced about that but we'll have to wait till we next see her for further discussion.

Oh well - onwards we go.

Rosy

Edited by member 09 Feb 2016 at 20:03 | Reason: Not specified

User

Posted 09 Feb 2016 at 23:18

Very concerning Rosy, no wondered you are worried. I guess all you can do is take the advice of the oncology team and hope for an improvement. It's so hard to find the right words to say and I can't seem to, so I'll just send you hugs.

Love

Allison

User

Posted 10 Feb 2016 at 05:59

Hi risy
Wish i had the answers for but all i can do is offer my support
Take care

Regards
Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 10 Feb 2016 at 14:43

Rosy

The drop in Hb should be boosted with the transfusion again. I know nothing about Abi so I hope someone can give you benefit of their experience.

It can take a while for these treatments to get going, so frustrating as it is, I guess you have to follow your Oncologist ' s guidance and advice.

The tiredness and fatigue are all part and parcel of this crap disease, of course depression can add to that.

Thinking of you

Best wishes

User

Posted 17 Feb 2016 at 22:35

Thinking of you Rosy

User

Posted 26 Feb 2016 at 09:01

Had a trip to A&E last Sunday as he developed a temperature of 39C. Having taken paracetamol and having a quick shower before we went his temperature dropped to normal shortly after getting there and hasn't gone up again since. He was diagnosed with a urine infection and started on antibiotics. The only other problem they found was that his platelets are now low so we have to get another blood count done today or Monday.

Recently he has had frequent nausea and occasional vomiting despite being on regular anti sickness medication. This got worse this week to the point that he was barely eating anything and was totally disinterested in food. He looks thinner and thinner. A call to the hospice nurse resulted in us doubling the anti sickness pills which has made a big improvement. He was very proud of his empty plate yesterday!

His sleeping pattern is appalling - sleeping most of the day and up most of the night. The sleeping pills don't work anymore but the hospice nurse will talk to the GP about trying something different just to get him back into a better pattern. He went to bed at 6.30am today! And within an hour we had scaffolders setting up across the road just to help him sleep!!

On a positive note he is quite upbeat which is good.

Rosy

User

Posted 26 Feb 2016 at 09:17

Sorry you've had the ups and downs Rosy.

Your husband is a real trouper. I hope he manages to get his sleep pattern organised as sleep is so important (well you know that anyway).
Apart from the importance of the sleep itself is, of course, the isolation for you because he's asleep while you're awake and vice versa.

I'm thinking of you both

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

User

Posted 26 Feb 2016 at 19:26

Rosy

It's really difficult when all the normal things that balance our bodily functions go squiffy. Disturbed sleep, lack of appetite nausea, sickness and temperature spikes are all sadly common in later stage cancers. As you will know it's not just the physical changes but sometimes the psychological ones too.

Thank goodness you know when to take action.

It's reassuring to hear that he remains upbeat despite everything.

I hope you are also getting some rest and quality time too.

Best wishes as always

User

Posted 27 Feb 2016 at 21:52

Hi Rosy,

Just wanted to say hi and that I am thinking of you, we are both going through tough times. There is a cuddle blanket that does the rounds on the forum, Alison had it last and she has just sent it to me . If you need it just let me know and I am more than happy to send it for you. It is just a virtual cuddle blanket but you will be surprised how much it helps .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Feb 2016 at 10:14

Thank you all. Yes I do feel a bit isolated despite weekly coffees with friends and frequent long phone calls. Sometimes I feel like I am just watching and waiting. But yesterday after much soul searching I accepted my future daughter-in-laws invitation to go wedding dress shopping with her in London. My son came and 'dad sat' and I had a really nice day out. I even got a glimpse of the changing of the guard from my taxi!

Julie - the offer of the cuddle blanket was lovely and made me feel better just from the thought. You hang onto it at the moment - you need it too. Your Trevor sounds amazing going up on the roof to fix it despite everything!

Rosy

User

Posted 28 Feb 2016 at 21:33

Hi Rosy

Enjoy the cuddle blanket, it made me feel much better knowing people here were thinking kindly of us. You are very impressive, your love shines out and I was delighted to read that you'd been wedding dress shopping, I loved that time with my girls, so special. Many lumps in the throat were kept under strict control after seeing my beaufiful girls in their finery. I'm glad you have someone you trust to look after your hubby so that you can have an occasional trip out, going stir crazy isn't good for you.

With lots of love

Allison xxxx

User

Posted 04 Mar 2016 at 01:39

The effect of the extra anti sickness tablets has waned now. Not much nausea but absolutely no appetite or desire to eat. His daily intake is a banana with his steroids and one or two Ensure drinks and maybe one small bowl of cereal or a cake. He is even drinking less despite my presenting him with regular tea etc. I pour about half of them down the sink.

He has lost a stone and a half since Xmas and is getting weaker. The last 2 nights he has begun feeling unwell late evening - his 'normal' progression type symptoms. I have had to follow him up the stairs as he is so wobbly and help him undress.

Today he looked at his emails for the first time in weeks. One was a friendly message from his part time job asking how he is and he asked me what he should say. I suggested saying he still wasn't well and wouldn't be able to work. He said quite seriously 'but I'm not ill I'm just feeling weak and feeble'!!

Is one of us in denial? My eczema is spreading wildly!

Rosy

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