Are we coming to the end?

User

Posted 16 Dec 2015 at 00:24

My husband is 58 and was diagnosed with advanced prostate cancer in April 2014. He had widespread bony metastases - hips, ribs and spine. Gleason 7 (4+3). He has had Prostap since diagnosis which seemed to work initially but after 4 months his psa rose again. He had Bicalutamide added then (August), but around Christmas his psa started doubling rapidly and he became very unwell. It was initially thought to be prostatitis as he responded well to antibiotics but his psa continued to rise. He started Docetaxel in March and completed the 10 doses. He did very well on this until around the 8th dose when his psa started to rise again. At the end of the course of Docetaxel he was started on Abiraterone. His bone scan in September was a 'superscan' where the bones were very clearly highlighted but his kidneys were not, indicating significant metastatic progression. Since September he has been suffering from anaemia which is getting worse. His consultant 'assumes bone marrow involvement' and has referred him to a haematologist. Our appointment is on 29th December. For the last 2 months he has been having blood transfusions nearly every 2 weeks. He had 2 units of blood 3 weeks ago (Hb 8.9) and then 2 weeks later his Hb was 7.1. He had another 2 units today and the plan is to give him another 2 units on Friday in the hope of keeping him reasonably well for Christmas. He feels so lethargic and is beginning to have bouts of aches and pains and feeling generally unwell. Why is his Hb dropping so quickly?? Is this the end looming? I'm scared..

User

Posted 16 Dec 2015 at 06:23

morning rosy
I can understand that you are scared, have you had a chat with your nurse or oncologist re your concerns, we on here can only tell you what and how treatment is affecting us and it is such an individual thing.

I just wish at times that I had a magic wand to take away all the ugly thoughts you ladies must have and that you dont want to burden us men with them, the strength and commitment along with the love you give is fantastic

hoping you can find some of the answer that you need

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 16 Dec 2015 at 09:34

Hello Rosy and welcome to this site.

I have no experience of the drugs you talk about but there are many on here who do and there are wives on here who have been in your position so please check back because I am certain that they will be along to offer their help and support.

All the best

Sandra

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

User

Posted 16 Dec 2015 at 09:45

Hi Rosy.

Firstly my heart absolutely goes out to you. My partner, aged 62, was diagnosed May 2013, a very aggressive disease which didnt really respond to any treatment for any length of time and he died sixteen months after diagnosis so I appreciate the situation you are in and the emotional distress it is causing you.

Obviously no one can give any guarantees regarding your husband, this disease is so unpredictable and, along with the treatments, plays havoc with all sorts of bodily functions, hence the erratic blood readings you mention. Your husband is likely to be fatigued with the spread of the disease and barrage of treatments not to mention the stress of having a life limiting illness. Have you and your husband been referred to a local palliative care service, who are experts in supporting patients and families through this most difficult of times? I wish my partner had been referred much earlier as this service was the one thing which took some of the pressure and stress off me as carer and with hindsight , it's something I always suggest to people. We have a number of threads on the forum asking a similar question to yours, eg., is this the end and it might be worth searching the forum for them. The other thing is preparedness, hard as it is, having arrangements in place over end of life, where ? access to controlling pain, your partner being able to have some choice if you are able to broach these things with him, you may already have done so.

We have some men on the forum whose situation seems critical, but then they rally, often those with treatable issues like infection or following a blood transfusion. Some men feel better on steroids which help with fatigue. Have you talked over your concerns with your medical team as to what further treatment is available or come to a decision when it would be better not to subject your husband to further treatment bearing in mind quality versus length of life. Are there little goals you husband want to achieve, eg being reasonably well for Christmas ?

As this phase progresses, the world often seems to shrink and realistic plans which make your husbands life worth living are important. Do you have support for yourself, the PCUK Helpline is excellent as are Macmillan. There are a number of men on the site who have had experience of Enzalutamide, again with varying results depending if their particular disease is responsive or not, again, the pros and cons need to be clearly outlined by your husbands medics.

I send you my sincere best wishes, it is ghastly place to be in. You will get huge support from this forum, people just offering their best wishes as well as more specific answers.

Fiona x

Edited by member 16 Dec 2015 at 09:47 | Reason: Not specified

User

Posted 16 Dec 2015 at 13:40

Rosy

I read your post and wept, my heart really goes out to you. Sometimes we ask questions and when we get answers we wish we had not asked the questions at all. Fiona has posted a lovely heartfelt and truthful reply to you. I agree with everything she has said. There are several of us ladies who actively post on here who have also had the truly awful experience you are going through.

Is this the beginning of the end? a very difficult question for anyone to truly answer other than a qualified medical practitioner.

Your Husband's response to treatments has been very similar to Micks, the anaemia caused by both the disease and the chemo was also a significant issue for him. Every time he had a blood transfusion he would feel so much better, he would eat better, sleep better and that was good enough for us both. That worked right through to the last few weeks.

You have not said how good your Husband's mobility is or if you are getting all the financial help you should be entitled to. Let us know as we can point you in the right direction or give some more guidance on things to look out for.

I also strongly suggest you ask for referal to a palliative care facility. If you have a local hospice ask them if you can call in or if they have a day centre go to that. The hospice is not all about end of life it is about making the most of the life your husband has left. Giving him as much control and choice as possible.

You will almost certainly need support and guidance. your Husband will also be going through all sorts of emotions and mental anguish as well as his physical symptoms and pain. They have people and facilities that can help with everything. Our local hospice were amazing once we finally got to talk with them. Like Fiona it all happened much later than it should have done and I really needed their help and support much earlier. Macmillan also offer similar help and support at home.

When this disease is diagnosed at an advanced stage it has no set path at all, some Men respond well to every treatment they go through, others like my Husband, Fiona's partner Neil and it would seem yours, sadly do not. There is no rhyme or reason, nobody has ever managed to give me anything like an adequate explanation as to why the disease progressed so fast and with no real respite in Mick's case.

I, like others here can offer you as much support as we can, I will always try to answer any questions you have with honesty and compassion. There has to be hope it is what keeps us moving forwards, all the while trying to keep our own fears and enormous sadness hidden from our partners, Husbands, family and friends.

There are men on here who have rallied against all odds, when every treatment seems to have failed the next one by some miracle just keeps them going. So it is really important you take care of yourself too, your strength will be his comfort.

If and when somebody from your Husband's medical team tells you that this is a transition from palliative to end of life care then there will be so many things you can do that will make everything easier for you to manage and face together. Until then make sure you know who to ask for help in doing that.

I send you a very large virtual hug,

my very best wishes

xxx

User

Posted 17 Dec 2015 at 01:33

Thank you for the responses. I really just wanted to connect with people who understand.

I am a nurse but this is very alien territory for me, but I do understand the implications of alot of it. I prefer to know everything but he tends not to so it's difficult when we see the consultant because I don't like to ask things that he may not want to know.

When David was ill back in January I asked for a referral to the Hospice nurses and they have visited a couple of times and do call to see how things are. I did manage a private conversation with the nurse a couple of weeks ago and he agreed that things weren't looking good. The thing I find difficult is that David is not a great talker. He doesn't want counselling or Hospice services at the moment and tends to stay 'in his bubble' which I can understand. I have to confess to telling a couple of his friends just to pop in unannounced as he will chat about football etc if they turn up and seems to enjoy their company. But if we plan visitors he will inevitably ask me to cancel at the last minute.

I am a talker but have good friends who are good listeners. I did have a volunteer from the Hospice phone me a couple of times but found her a bit too 'motherly'. I have a very black sense of humour like my friends and we understand each other well.

David and I have had some 'proper' conversations and he has written me instructions re his pension etc. We've also put all the bills etc into joint names. He's told me that he has no particular wishes for his funeral and what to do with his ashes but he is not easy to talk to about such things. Not a conversation that's very easy to start. I guess if he was told the end was near he would talk more freely.

As for his mobility he is ok except when he is very anaemic. He can shower and dress even though it exhausts him and he spends most of the day once he's finally got up on the sofa. The blood yesterday picked him up alot. I got home from a dentist appointment today to find he'd cooked the dinner! It's all such a roller coaster. On a good day we occasionally drive into town and have a coffee but that's rare and it tires him out.

Financially we are ok. He retired a couple of years ago so we have his pension. I have been off sick from work since mid October because of his health but am still being paid at the moment. He is badgering me to go back after Christmas which is not realistic as things are. This week we have to go to the hospital 4 times which is a 45 minute drive. That would only leave one day for work!

I note the suggestion of Enzalutamide and will make sure we ask about this when we see the consultant in January. She has asked the haematologist whether he thinks steroids would help so we'll find out about that on the 29th. We have an appointment at the nurse led clinic tomorrow so will find out what his psa is - not feeling very optimistic!

Sorry this is a great long ramble but I'm just trying to answer all the questions you have asked.

Thank you for being there!

Edited by member 20 Dec 2015 at 01:52 | Reason: Not specified

User

Posted 17 Dec 2015 at 08:40

hi rosy
no it wasn't a ramble, it seems you gotten control of as much as you can, trying to find answers when you can not ask the questions must be very hard, have you got your consultants secretary number, maybe you may be able to have a chat on the phone with the consultant

is it possible to just give hubby a list of questions and let him write down the answers

he is probably like most of us men we tend to think we are superhuman, and don't want to show any weakness

re your work he may not want you to worry re loss of wages, might sound daft but it does go through our minds

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 17 Dec 2015 at 08:54

I agree, not a ramble at all Rosy.

This is a difficult time for everyone but I think especially so when it happens at Christmas. The world seems so full of joy and light heartedness when your own world is slowly shrinking around you.

Perhaps your husband's advice to go back to work is not so much financial but more a question of keeping your hand in and also getting non cancer related conversations with other people. Something to alter your day, especially if he sleeps a lot or doesn't feel like going out and doing much.

He's helped you with the practical side of things and I think it's great that he id trying to make the future as simple as possible for you.

I'm not in your shoes and those that are (or have been like Mo and Zarissa) have will continue to offer their advice but I do feel for you wish you both as much good health and contentment as can be obtained at a time like this.

Sandra

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

User

Posted 19 Dec 2015 at 00:46

Well he had his second transfusion of the week today. It was disappointing to hear that his Hb hadn't risen nearly as much as it should have done after the first one. He felt very unwell this evening and was in some pain.

I had a fairly lengthy phone conversation with the hospice nurse today. He was quite open with me which is what I wanted and needed. He confirmed my feelings that things don't bode well. His feeling was that with the current frequency of transfusions they will stop being effective at some point. He felt that the time was approaching for him to be told the treatment isn't working. We discussed ways of approaching this with the consultant. It was actually very helpful for someone to be open and honest with me and I do feel I know where we stand now.

I also had a phone appointment with the occupational health nurse as I have been off work for a while. I've relayed to David that she felt I should stay off so that helped as well.

Despite having my fears confirmed I feel a bit better today. It's a pity David doesn't though.

User

Posted 19 Dec 2015 at 05:24

its good you are getting the support from work, from what you post you need as much time as possible with David, my heart aches for you both, wish I could advise you on the conversation you have ahead, but I am sure like all of us on here it will be done the utmost love, keep your chin up lass as much as you can, be thinking off you both

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 19 Dec 2015 at 14:44

I wish you well Rosy and David. This is such a difficult time for you both.

Perhaps for you Rosy, the "knowing" is better than the imagining and hoping, which would be such a disappointment if you have built those feelings up and then you are disappointed.

I hope David feels a little better soon

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

User

Posted 19 Dec 2015 at 19:40

Dear Rosy

I have read your post with my heart in my boots, thank goodness we have Zarissa and Mo to be completely honest, their experiences are so generously shared with us. I'm like you, if I have facts I can cope, we are not quite at your stage yet but getting there slowly. I just wanted to say we are here to talk to as and when it helps. This forum is brilliant for giving support and vases like your own show the value of the site.

It sounds like you are in touch with the right people now thank goodness. What Mo meant about finances was whether you had claimed a PIP payment (you need form DS1500 signed by a doctor, which you will get and you will be fast tracked, this is the old DLA (disability living allowance), it's not means tested. Also what about a Blue Badge? Have you got those things sorted? It's hugely helpful in your situation. Ask your hospice for help with the forms.

Sorry to be practical,

Thinking of you both

Love Devonmaid xxx

User

Posted 19 Dec 2015 at 21:39

Hi Rosy,

Sounds as if you are doing absolutely everything you can. One other thing is not to feel guilty if you have begun to feel emotionally detached from your husband, it's a normal thing given the changes in your relationship due to the impact of the PCa. It's also a means of protecting yourself and just plain surviving, doesnt mean you love him any the less. My heartfelt wishes to you, It is not easy to stare your situation in the face and deal with it full on. Keep posting,

Fiona. xx

User

Posted 20 Dec 2015 at 01:36

I had briefly wondered about a blue badge but hadn't done anything. Also I assumed the PIP was means tested and that we wouldn't be eligible.

I will look into these thanks.

Fiona - that's an interesting point you made. I do confess to escaping to another room for periods during the day as it's just so hard to cope with non stop. Even though he doesn't say too much it's easy to tell when he's thinking about his situation and he frequently tries to hide the fact that he's feeling emotional. But most of the time he tries to pretend he's all right. It's also unnerving that he is becoming increasingly dependant on me just being there when he always was so independent.

We had some very good friends drop in for an hour today. Overall I think he was pleased to see them even though he wasn't feeling great. Yesterday's blood or the visit or both have perked him up this afternoon to the extent that he was talking about coming to the supermarket with me tomorrow. We used to have rather more exciting outings but this is a positive as the only outings we've had in the past couple of weeks are to the hospital.

By the way the psa this week was 20 minimally up from the 19 last month. It was 34 when he started Abiraterone 2 months ago. But the Hospice nurse said there's a time when the numbers don't really matter if the symptoms are increasing. A new sign i noticed today was that his ankles are a bit swollen and he still looks very pale despite the 4 units of blood this week.

His pre transfusion Hb yesterday was 8.2 which came as a bit of a shock to us both. It had been 7.1 last Friday but he had 2 units on Tuesday so it should have been about 9. Perhaps this is what the Hospice nurse was saying about transfusions becoming less effective.

I just hope we can have a last Christmas with him feeling well enough to enjoy it.

Rosy

Edited by member 20 Dec 2015 at 02:08 | Reason: Not specified

User

Posted 20 Dec 2015 at 19:41

Rosy

at 4.30 this morning when I couldn't sleep I wrote a post for you that would not post, I tried and tried but it simply would not post up. In hindsight I think it was one of those "meant to be moments"

Right now I really believe you should focus on Christmas and having the best time you can, whilst you can.

I do have some things I would say about benefits and watching out for certain things in your husband's well being but they can all wait.

I will be watching out for you posting after the holidays, however if you need some more support now please message me and I will get back to you.

all the very best

User

Posted 21 Dec 2015 at 02:36

Not a bad day today. He felt too tired to come shopping but insisted that I didn't buy the drinks for Christmas when I went. He wanted to see if he felt well enough to go tomorrow - buying the drinks is HIS job! So I went to get the food and will hopefully go again tomorrow with him (and on Wednesday for the veg and on Thursday for the pre-ordered turkey).

I hope he's well enough before Thursday. We've only got one open bottle of gin and there'll be 5 gin drinkers here for a week! I barely drink these days but I do like a gin and tonic or two.

Despite feeling tired he was definitely brighter than before this week's transfusions. Feeling a bit off colour this evening but he generally is less well in the evenings. I'm not sure why that is. Hopefully he will get some sleep tonight. He hasn't slept well for weeks now and gets the most awful sweats which leave him absolutely drenched.

He banished me to the spare room weeks ago because he is so restless and sweaty at night. I wasn't very happy about it but I must say I sleep a lot better.

I wish I'd got onto this site earlier. I'd looked but didn't want to sign in because he often uses my email address as he's a bit of a technophobe. This is definitely not his thing so I'm being a bit sneaky and using a new email address and going onto the site when he's gone to bed - hence the late posts. We can normally talk to each other openly but now we are both masters at deleting our browsing histories. I guess he is doing what I'm doing and looking for answers to things that worry us and trying to protect the other. I know, and I know he does, that we should be able to talk to each other about these things especially after being together for 39 years but it's so hard to start the conversations...

Well I'm off to my bed now

Thanks all for being there

Rosy

User

Posted 21 Dec 2015 at 03:16

Hi rosy

The feeling a bit more run down in evening i think will be due to just lack of energy i get the same at moment gets to 5-6 oclock and i get less energetic more tired

We tend to do shopping and visiting in the morning its a lot less busier shopping earlier and try to make sure i am home by 6pm as need a rest

Know what you mean re the spare room

Been using ours for a few week so as to let wife get some rest

I dont think you are being sneaky with coming on here we are here to help each other and boy at time is that needed

This forum has given me so much help and support

He will be doing what he feels is best for you it but might not seem like it

Regatds

Nidge

Edited by member 21 Dec 2015 at 03:17 | Reason: Not specified

run long and prosper

'pooh how do you spell love'

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

User

Posted 21 Dec 2015 at 10:22

Rosy

the information about benefits can wait but the night sweats that leave him drenched might need to be mentioned to your medical team.

As a nurse you will know of many things that can cause those sweats, hormonal changes in particularly, however there can be other more serious causes. I believe you said your Husband has extensive mets including in his spine. I only mention this as something for you to at least ask about, not so that you will be frightened by it. If your Husband is also getting any pins and needles or numb sensations in his hands or feet, if he has any difficulty actually weeeing or defacating or has what my Husband used to call "jelly legs" (they sometimes just wouldn't do what he wanted them to and he felt that they were not supporting his weight too well.) Then ask about the possibiity of a spinal cord compression. As you almost certainly know this condition can be very serious but it can also often be successfully treated if it is diagnosed quickly.

With regards to your secret e mail address and using the forum as you are, I think many parthers or Husbands and wives start out in a similar fashion. One thinks they are protecting the other. I was advised by a lovely friend on this forum to try and get "the elephant out of the room" and encourage my Husband to talk openly with me about what he was facing so that I could reassure him that I would be there with him every step of the way. Once we got that first conversation going it was like the flood gates opening for us both. I told him all about the forum right from the day I signed up. He knew how much it was helping me and although he never posted himself he wanted to know about everyone and everything.

I am not saying it has to be that way, sometimes this horrid disease makes people behave outside of their normal character, now that can be a positive thing as well as a negative. I know that the openness I had with my Husband helped me enormously and I am certain it helped him too.

My thoughts are with you

User

Posted 21 Dec 2015 at 15:34

Rosy

I read your posts with a very sad heart and wish I could find some words that could ease your situation. I am sure there are many members who feel the same and like me have you both in our thoughts. Our lovely ladies on here seem to find the right words and I hope they are of some comfort to you. I think what has hit a raw nerve is that in April 2014 I was having surgery with a view to a cure and at the same time your husband was being diagnosed with this evil disease and does not seem to be as fortunate.

As suggested now is perhaps the right time to talk. Make sure you also look after yourself.

Thanks Chris

User

Posted 22 Dec 2015 at 18:18

Hello Rosy,

I hardly know what to say, your posts have made me feel so sad.

So, I'll go for practical.

Why not do the drinks shopping from your iPad or computer? Get them delivered.

My oh would be mortified if he knew what I post on this site. I don't tell him. Just filter through information.

I shall be thinking of you this Christmas, and hope that you manage to have the Christmas you wish for.

Louise x

User

Posted 23 Dec 2015 at 01:30

Thanks for all the messages. We had a good day yesterday, made it to the supermarket, bought plenty of gin etc and even stopped at the cafe for a sandwich and coffee. He even drove there and back.

Then last night he didn't sleep well and has felt increasingly unwell today. The roller coaster goes on!

Mo - thanks for your thoughts on the night sweats. They have worried me but he did mention them at his last appointment and the verdict was that it was due to the anaemia. He did have a CT scan only about 3 weeks ago and that didn't indicate any signs of MSCC but it is something I have in mind. He had sudden severe back pain back in September and did have an MRI scan then to check. But I do keep asking him about his legs, weeing etc.

At the moment I am just hoping he picks up enough to enjoy Christmas.

And I wish a happy Christmas to you all.

Rosy

User

Posted 23 Dec 2015 at 03:46

Ho rosy

I find that doing to much in a day affects how i sleep so it may have just been down to the extra effort of going out shopping and the driving taking its toll

Maybe best in futue when u go out that you do the driving

Happy Christmas to you both

Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 28 Dec 2015 at 02:10

Well we got through Christmas and he did well! He was up and showered by 10am for present opening and a bacon sandwich. Then he went for a rest until dinner (which I finally managed to produce at 5pm!) then we watched all the Christmas programmes in the evening. He enjoyed some of the joke presents and although he didn't eat alot he was cheerful and upbeat. I thought he'd be exhausted on Boxing day but he's resorted to his 'normal' pattern of getting up mid afternoon and staying up till about 1am.

We have noticed that his colour is poor - depending on the light he is either very pale or slightly yellow. One of the side effects of Abiraterone is liver problems. We see the haematologist on 29th so will see what he says.

Rosy

User

Posted 28 Dec 2015 at 09:07

Hello Rosy
Im not so good with the right words to say but am thinking about you and Hope upon hope that things go better for you and your OH.

You mention abitaterone and enzalutamide.
I took abitaterone during 2015 and I had liver problems. Fortunately my bloods stats are measured frequently so that when my ALT reading started rising exponentially I was able to stop taking the drug.
Over the same period I have also been on enzalutamide and this has kept my psa low and in check so far. Whether it works the same for everyone I don't know but I'd certainly ask about it.

Paul

User

Posted 28 Dec 2015 at 10:08

Dear Rosy

You are both in my thoughts and I hope that you and your man can get more joy out of this season.

I am so glad that you both managed a fairly "normal" Christmas day.

I really hope that tomorrow's visit to the Haemo will bring some positive help.

All the best

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

User

Posted 28 Dec 2015 at 11:41

Hi Rosy,

Glad the last few days have been fairly settled for you, hope it continues into the New Year.

Thinking of you both,

Fiona. xx

User

Posted 28 Dec 2015 at 15:23

Ho rosy
Pleased to read you got to spend some time togeather on christmas day

Regards
Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 28 Dec 2015 at 19:31

Hi rosy

Have been following your thread and my heart reaches out to you.

I am so glad you both had a nice memorable xmas day. I hope your next appointment brings some positiveness to your difficult situation.

You are in my thoughts rosy.

Lesley xx

User

Posted 28 Dec 2015 at 20:27

I haven't really known what to say Rosy , but your Xmas post surprised me. Things went so much better than expected.
Thinking of you both
Chris

If life gives you lemons , then make lemonade

User

Posted 29 Dec 2015 at 09:24

Hi Rosy, so sorry to hear what you are both going through and pleased that you have had some semblance of "Christmas" let's hope it continues into new year.

I do not really know what to say but feel for you both at this horrible stage.

Try to stay strong, my thoughts are with you both.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint.

User

Posted 29 Dec 2015 at 21:34

Hi Rosy,

I haven,t chipped in on your post before but a I have been reading , similar to you we are in the met camp and life is not so easy. I just wanted you to know I understand and know how hard things are .

Thinking of you both

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 31 Dec 2015 at 02:37

Well we saw the haematologist yesterday - only an hour late - but an hour is a long time for someone who is feeling very unwell. I tried to distract him by spilling boiling tea on my leg and all over the floor when the lid came off but all that did was give me a sore leg! Also I was on the receiving end of a (deserved) tirade of abuse in the car park. I dropped him at the entrance then went in search of a parking place. I was feeling very anxious about the appointment and wasn't concentrating properly so I drove over a zebra crossing when 2 people had stepped onto it. There was no danger of me hitting them and I know I should have stopped but I did wish they might have considered that I wasn't having a good day!

Anyway the Dr said there were 3 possible reasons for the anaemia. 1. premature death of red blood cells but the blood results did not suggest that this was the problem. 2. Iron, folic acid or vitamin deficiency - he said he would have these results later in the day and would phone us if he needed any supplements. No phone call came. 3. Infiltration of the bone marrow - no treatment apart from blood transfusions and whatever the oncologists can offer. They could offer a bone marrow biopsy to confirm this but wasn't convinced this would be necessary. Knowing that bone marrow biopsies are not very pleasant I agreed with David that it was probably worth passing on this.

Hb was 8 so he said another transfusion was needed but because we were at a different hospital we would have to contact our hospital to arrange this. What a joke - they are 'sister' hospitals in the same Trust with equal access to records etc. Anyway so we called our usual hospital before setting off home and they said an 'action form' hadn't been completed but they would look into it. Today has found me chasing them up and at 3pm the form has still not been done, our consultant and her registrar are both on leave and the form has been left with a covering doctor. So with Friday being a Bank Holiday it looks as though he won't get the transfusion until at least next Tuesday allowing for cross matching time. Very frustrated!!

We came away from the appointment in silence and he has been very flat in mood since. He feels awful, very lethargic and shows no interest in eating so I am just presenting him with food and he does eat a little. When we got out of the car yesterday his jeans just slid down to the tops of his legs but he denies losing any more weight! He came downstairs today at about 11.30 - quite early for him - but didn't make it back up for a shower till about 9pm. Really struggling on the stairs. Wish we had a downstairs bathroom. We have an outside loo which is ok if it's not raining.

I have tried several times over the last few days to get him to talk properly about how he's feeling but it's a losing battle. Both the GP and the hospice nurse have commented recently about him being a very private person and not wanting to talk about his feelings. I will keep trying and he knows I'm there to talk if/when he's ready. He did say that he assumed it was bone marrow infiltration and what did I think that meant. I couldn't answer because I genuinely don't know but did agree with him that that is probably the case. I do usually try to look on the bright side, at least for his sake, but I needed to be completely honest this time.

Just as an added extra my daughter came down with a nasty D&V bug on Monday. I was woken to discover the bathroom needed a thorough clean up - not good news for someone who is not a morning person! I have been keeping them separate and madly nagging about hand washing and disinfecting door handles, running up and downstairs with drinks/ice lollies and cleaning out sick bowls. So I'm still working despite getting another certificate from the GP!

We soldier on....

Rosy

User

Posted 31 Dec 2015 at 05:31

Ah Rosy, I really feel for you and wish there was some crumb of comfort I could pass on to you.

I now this is so very hard for you but what can you do but shoulder on.

There have been occasions on here when i have nagged the men to include their wives because we are living with this too in a lot of ways and we have that desire to make it all better and go away. The frustration when we can't do that or like in your case, when it is completely in the hands of others, is very wearing.

It is the early hours so naturally there aren't many people around but I do hope that those who have already got practical experience of what you are going through and what help you need will be along to offer help and advice.

In the meantime, well, you know we are here for you girl.

Chin up !!

Best Wishes

Sandra

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

User

Posted 31 Dec 2015 at 18:00

What a horrible way to face a new year - he must be very frightened for what the future holds. Maybe talking about feelings is too difficult but will he have those essential practical conversations with you - the sort of 'let's talk about it now so that we don't need to when the time comes' conversations of 'what would you want / where would you want to be / how does the boiler work' sort of stuff?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Jan 2016 at 16:35

Oh Rosie

Having been through a traumatic hospital experience this holiday I know what you mean about efficiency. As far as I can see, there is none. Anyway that's another story, I feel a certain stoicism with both you and your love, I recognise it. We do have those conversations about the practical things but feelings are much discussed. My OH is not as bad (as far as I know) but it's always on our shoulders, how will we know when things are getting really serious? I assume we will just know.

Anyway, no one seems to be able to solve the communication problem in the NHS and this stuff always seems to happen at holiday times too. I hope you can both stagger on until Monday and then action taken urgently.

Love

Devonmaid xxxx

User

Posted 03 Jan 2016 at 01:24

Well after making a number of phone calls we eventually managed to make sure the form was signed. We were lucky that they had enough people needing transfusions (not lucky for them) that they opened the day unit today. So he has now had his blood and then came home and slept / dozed most of the afternoon and evening.

We did ask whether he couldn't be booked regular slots as he's needing blood every 2 weeks now, which the nurse said was possible and to ask the consultant to arrange this. We're seeing her on 11th so will ask then. It would make everything alot easier for us and prevent the wait of up to a week after being told he needs it. His Hb falls so quickly and you can see him getting tireder and more breathless the longer he waits.

As far as the conversations go we have already sorted all the practical issues and he talks me through the tasks that he's always done such as bleeding radiators! A few weeks ago we had a blocked drain which I tried to deal with - messily and unsuccessfully! He then confessed that he puts caustic acid down there about once a month but hadn't done it for a while. So a nice plumber came and did the job and tomorrow I will be wielding the caustic acid!

I do need to tackle the question about what he wants when the time comes. He did tell me that he didn't want to die in a hospice but then clammed up and didn't give a reason or tell me what he DID want. I'm guessing he means he wants to be at home which I'd be happy with. Let's see what the consultant says next week. I suspect that if she says there's no more she can do he will start talking but maybe she'll let us try enzolutamide....

On a positive note after much discussion on what to cook for dinner I commented that the only food he seems to like is bacon sandwiches. To which he suggested we have egg and bacon for dinner. I added mushrooms and tomatoes and for the first time in ages he ate it all followed up by ice cream. What a healthy diet - but does it really matter?

Rosy

Edited by member 03 Jan 2016 at 01:28 | Reason: Not specified

User

Posted 03 Jan 2016 at 04:50

hi rosy
b***er the diet, know what you mean re list of house jobs we have been doing that for awhile, I keep meaning to make a list of all the things I have tended to deal with think today will be that day, we already know a guy who can help with the other jobs when needed ie painting/decorating, plumbing
wouldnt ask re the transfusions I would politely tell them
I think what he didnt say was enough about what he would like when the time comes
you ladies continue to amaze me

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 03 Jan 2016 at 08:06

Hi Rosy I am with Nidge on that one about you tough ladies.. What a remarkable bunch of OH's there are on this site, it constantly amazes me how some of you deal with the situations as they occur. I for one am grateful for mine, she has been as solid as a brick and so supportive.

Keep eating the bacon butties and anything that you can add to that so he will get a varied diet, have you tried small squares of diced bread mixed with egg then fried? Yummie.. Making my mouth water now.

Hope you are writing down all the little hints for future use.

Again in all this stay strong(you obviously are) do not forget yourself.

All my thoughts are with you at this horrid time Rosy.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 03 Jan 2016 at 09:23

Rosy your husband's diet doesn't matter at this stage does it as long as he fancies something and what he fancies is what you have to hand.

When my mum was at your husband's stage she had sudden fancies. My dad would say she really really fancies a chocolate mousse (I am going back now 38 years) and it wasn't the sort of thing one kept in the fridge so I'd get up extra early make it from fresh ingredients, including Cadbury's chocolate and then drive and hour and half to take it to her by which time she had gone off the idea !! I never minded, I just wanted to do something to help.

Funnily enough one of her usual requests was bacon. Perhaps it has something to do with the flavour cutting through the taste in the mouth that drugs / treatment leave?

Enjoy your eggs, bacon, mushrooms etc and perhaps for you add a bit of fruit for afterwards, maybe some vitamins.

I hope you are looking after yourself too. It's a hard road you're travelling and you need your strength.

Best Wishes

Sandra

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

User

Posted 03 Jan 2016 at 09:26

Absolutely with you on the 'diet '!! I got to the point with Neil when I thought 'what the heck' and I just got him whatever he wanted if it was a source of enjoyment. Whatever plans you make for end of life care, and it is a good thing to have those plans and as much control as possible, sometimes deterioration happens very quickly and unexpectedly and it just isnt possible to stick to whatever has been arranged. On balance, the men who have died in a hospice or with a lot of hospice support seen to have had a far more peaceful passing. The bereavement group I attended also discussed that a good end of life experience was better for families in terms of coping with grief. I sympathise so much with your comments about it being hard to discuss matters with your husband, my partner was the same, made it more difficult for me but you just plod on ! You are in my thoughts,

Fiona. x

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

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