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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 27 Mar 2016 at 03:51

I have been overwhelmed by the messages I have received from you all, longer term members and new members alike. Thank you! I did smile at the 'hey up duck' from Nidge!

We are now awaiting the end of a long Bank Holiday weekend before we can move forward with arrangements but have filled the time with poring through photo albums and David's very extensive I-tunes lists. Lots of visitors, flowers (no vases left now), tears and laughter.

So far David's niece has introduced us to her best friend who is an independent celebrant and sounds perfect for David who was not a churchgoer. And we have pinpointed Rick Wakeman's Bowie tribute of Life on Mars which we both really liked when we heard it on the radio on the way back from hospital one day. Little steps...

Must find a shop that's open tomorrow for more tissues

Rosy

User
Posted 23 Apr 2016 at 00:39

You have to laugh or you would cry at Government departments! I have transferred ownership of David's car to me by filling in the correct form and explaining why he was unable to sign the form. The DVLA had already been informed that he had died. I received the new logbook today with a note reminding me to pay for the tax as the previous owner would be refunded in line with the new system.

Having paid the tax for him in February from our joint account this seemed madness, but after a phone call I was told a refund cheque was in the post and that I would have to pay it afresh. So I paid again from the same bank account and when the post arrived there was the cheque - made out to David. There was also a separate letter to him telling him that he was no longer the registered owner! I really don't think he minds! 

So having already changed the bank account to just my name, I had a cheque that I couldn't pay in as it wasn't in my name. Finally I spoke to the Nat West bereavement team and have sent the cheque to them and they will pay it in. It all seems a bit of a farce to me...

The final piece of mail was from the funeral home to say that David's ashes were ready for collection. Luckily my BIL was happy to come with me as I didn't want to do that on my own. So David now resides on a shelf in the wardrobe which feels so sad. He asked me to take his ashes to wherever I decide to move to eventually and to scatter them somewhere I would visit regularly. It will be a while before I decide where to move to, so poor David will be in the wardrobe for quite a while. But in a funny sort of way it was a comfort to be able to hold something that was him.

Thank you for all the kind comments - I will certainly carry on visiting this forum as I want to know how all of you are doing.

Rosy 

User
Posted 22 Apr 2016 at 02:52

Well the funeral was on Monday and I think we gave David a good send off. My son and daughter were amazing, both were bearers and both spoke, giving heartfelt but also funny, tributes to their dad. There was a brilliant turn out with about 15 ex colleagues from the Met and more from his recent part time jobs attending. I think he would have been very touched by all the tributes especially as he was very quiet about his own achievements. I always suspected that he was very well thought of and it was lovely to hear that this really was the case. We have raised about £1300 so far (still rising) to be shared between PCUK and the local hospice.

I did not go away in the end but have been out and about with friends. My daughter leaves to start a new job in 10 days and I will go away then. I have had people around almost constantly and haven't really had much time to think. I think I am still in denial - it really hasn't sunk in yet that he has really gone. Once my daughter has gone I think being 'home alone' will hit hard. In the meantime I'm doing alot of clearing out (none of his personal things as yet) as I always feel more in control of my life if I am organised.

Next I will have to consider returning to work - I think I will give it a try with the condition that I can retire early if I want to. I had no idea that if your spouse dies before normal retirement age you are entitled to bereavement benefit and bereavement allowance! At least this will give me a bit of flexibility if I decide not to remain in my job. So many decisions but I will bide my time before making any big ones.

Rosy

Edited by member 22 Apr 2016 at 03:08  | Reason: Not specified

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 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 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 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

xx

Mo

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 08 Mar 2016 at 22:45

Thanks for all your replies as I sit here covered in E45 cream! Yet another difficult day.

We phoned the hospital yesterday to say he may not make today's appointment with the chemo nurse as he is so weak. She phoned us this morning to check that we were able to come as his Hb had dropped from 10 last Monday to 8 this Monday. She was shocked at how awful he looked and just to push the point he threw up rather spectacularly in the clinic room! So he was admitted so he could have a transfusion as soon as possible - which was eventually started at 5pm having been there since 10am. Also to have lots of fluid overnight as he's dehydrated and had a very low blood pressure. He was getting very irritable about all the waiting around to be admitted and everyone asking the same questions over and over, and was all for going home. I'm afraid I left for home to get his things at that point so he would have to stay! No point going through it all again tomorrow.

His psa is now up to 133 from 59 four weeks ago. Also his platelets are low and the consultant is considering whether to stop the Abi. He looked a bit better this evening and even managed to raise a couple of smiles.

Rosy

User
Posted 21 Mar 2016 at 23:44

Well it was all a bit chaotic today as the OT arrived at the same time as the District Nurse who was here to take bloods. But she couldn't access a vein so called a colleague and they were all trying to talk at once.. No wonder he got a bit tetchy.

He agreed to a swivelling bath seat and a second handrail for the stairs but flatly refused a bed downstairs. This is the first time in ages that he has voiced a definite opinion so we will respect it unless things get worse when we'll have to raise it again. He has a stick and a frame around the loo which he finds helpful.

The PIP and blue badge are now applied for and the GP phoned to re-assess his medication. Then the hospice nurse phoned with an appointment for Wed with their consultant - so lots achieved today!

He is incredibly pale and dozy today so I will phone for blood results in the morning and hope a transfusion is forthcoming. 

Steve - you raised something which I am really missing. He is an ex policeman and had a very good (and black) sense of humour. It seems to have completely disappeared which is so sad. We do have loads of videos/DVDs of jokes and pranks he used to set up thank goodness but it would be so nice to see him like that again.

Mo - I am sitting here drinking a G&T in the disguise of a mug of tea with you. Cheers!

Rosy

User
Posted 16 Apr 2016 at 19:50
Rosy ,

I trust your few days away had the desired effect and recharged your batteries. I hope everything goes as well as can be expected on Monday and just to let you know we will be thinking of you and your family. As I said before you do not have to be strong for the sake of others.

Thanks Chris

User
Posted 24 May 2016 at 21:36
Rosy

Reading your post does bring so many thoughts rushing to my head, the firsts of everything are so hard. First time away on your own, first birthday, first conflict, first screw up by a service provider and I hate to say it that list will go on with the passage of time. However ... every one can make you stronger and every one has to be worked through, friends and family will be there to support you just as they were for me. There will be times when you just want to scream at someone or cry big tears that are from frustration as well as grief.

One huge mistake I made was trying to deal with my grief alone, It took a very special friend to actually point out to me that I was not dealing with it at all,I was just trying to brush it all to one side and hope it would go away.

I went for one to one counselling arranged through the hospice, it wasn't all about my loss it was as much about finding myself and starting my life over again a little at a time.

Things do get easier and,if you let them, things can get better. For me a lot of it was about regaining my confidence. You sound as though you are already making big strides in the right direction there.

Take the advice from others here about the potential new neighbour, it is sound advice and you really do not need some idiot harassing you at any time, but especially not now.

Of course you miss David, but as you deal with every "first" then gradually you will grow more confident the memories will turn into things that give you great comfort, the pain is still there but it starts to hurt less.

You are doing really well, if ever you need to chat please just PM me.

Thinking of you as always

xx

Mo

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

Mo

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 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 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

xx

Mo

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

xx

Mo

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 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 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 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 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

xx

Mo

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 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 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 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.

xx

Mo

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 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

If life gives you lemons , then make lemonade

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

xx

Mo

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 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 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 09 Mar 2016 at 22:11
Oh Rosy,

So many people shy away from posts when they can't offer a strategic answer , they want to give a positive but sometimes there is no positive and all we need is a shoulder , a voice or just to vent and be heard.

So I hear you , keep going you are doing an amazing job. I have fingers and toes crossed for you . From another lady that understands and gets it . Life can be pretty Tish sometimes.

You can do it , and we are here behind you..

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Mar 2016 at 23:43

Thank you all - I do appreciate your posts and you're right Julie it's just nice to know people are there even if there's nothing to say.

Well he is home now after a terrible night with no sleep. A man in his bay had a cardiac arrest and subsequently died and then 2 others called out all night long!

The doctor on the ward decided he should only have 2 units instead of the 3 that the consultant had requested. Very frustrating as that means he'll need more sooner. Each unit seems to give him one transfusion free week. The chemo nurse was steaming and contacting the consultant to complain. At least they poured him full of IV fluids to rehydrate him.

He hasn't seen the consultant but she has taken him off the Abi due to his low platelets. Having previously said there were no other options, she left a prescription for him for Stilboestrol. Has anyone else had this at this point? We don't see her until 4th April and there are no available earlier appointments.

Having caught up on a few hours sleep he's definitely brighter in himself and even ate a bit in hospital. But can you believe he turned down rib eye steak this evening!! 

Rosy

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

User
Posted 10 Mar 2016 at 10:35
Rosy

Like Julie I hear you. I'm glad your OH is back at home but how weird that the ward consultant should go against the directive given by the Oncology team on the transfusion units.

DevonMaid's Husband has been on Silboestrol for quite a long time now, it is one of the older generation HTs but in some cases it works well with less SEs. I'm sure when she reads your update she will tell you more.

Im glad to read that you were able to decide to go home for the night and get a much deserved break. That is such a hard thing to do but sometimes totally necessary.

Thinking of you

xx

Mo

User
Posted 20 Mar 2016 at 01:39

Rosy, I am so, so sorry that you had to read it rather than the oncologist explaining it when you saw her. In one way shocking - you would expect cancer specialists to be trained in having difficult conversations - but on the other hand, maybe she really didn't know for sure until these most recent bloods came back.

The important thing now is to clear as many problems and worries from your head as you possibly can. Getting help to apply for the benefits will ease that although frustrating as you were probably entitled to some financial help months ago. Anything that makes the house more accessible and David more comfortable, and large slices of coffee & hugs cake of course

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

User
Posted 21 Mar 2016 at 00:52

Please forgive me for posting so frequently but it sort of helps put my thoughts in order and is so nice to know I'm not the only one having communication problems. If I am boring anyone or making them uncomfortable please do ignore me!

This afternoon I really didn't know whether to laugh or cry...

This morning D had a fall in the bathroom - we managed to get him up and he was unhurt apart from of course his dignity. After several minutes of thought he agreed to my helping him with his shower, then with drying and dressing him. This was very significant as I haven't actually seen him completely naked for about a year now - he has been so self concious about the changes the hormones have made to his body, not that it's bothered me but it has for him. The fall obviously shook him up a lot and a couple of hours later he started to speak.

D - 'I've been thinking.... (pause) - I've decided......(another pause) - I want to.....(long pause)

At this point I am on the edge of my seat thinking he is finally going to talk about how he feels or what he wants - then..

D - 'I'm going to leave the bathroom door unlocked in future' 

Me out loud - Yes I think that's a good idea and I will come and help you if you want me to. 

Me to myself - I need a large G&T or three.

As the days pass he is more withdrawn and uncommunicative. Sometimes it seems it is to much effort to answer simple questions such as 'do you want a cup of tea'. Other times he talks quite normally and interacts with whatever is on TV. He always gets several pointless answers when we watch Pointless! Over the last few days I am noticing that his attention is wandering and he looks to be in deep thought. It is quite painful to watch and I do wish he would talk a bit but on the other hand I do take on board what Mo says. He has to do it his way but it's so hard as Julie says trying to make the right decisions on your own. What wise people there are on this site!

Anyway I feel better now for putting it down in print. I'm sure someone will suggest that he may be depressed which I think he is but wouldn't admit to. He is on an antidepressant for it's appetite enhancing properties (which isn't working!).

Fingers crossed for an early appointment with the hospice doctor. Now where's that bottle of gin?? I've had just one alcoholic drink since Christmas because I've been worried that if I drink and he is unwell I won't be able to drive him to hospital and I'm the only driver. But my daughter had her first driving lesson today.. 

Rosy 

User
Posted 25 Mar 2016 at 20:53

Here we are having lost another brother we have smiled laughed and cried along each journey
We have hoped against hope held each others hand and given support above and beyond
Tears in my eyes whilst I try to find the words to help but knowing that any words can not take away the pain
Our hearts they ache for all that leave us and are strong for the new ones that join us
Regards
Nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 17 Apr 2016 at 10:45
I hope rosy that you and your family have found time for yourselves and each other whilst you have been away, just wanted to let you know thinking of you tomorrow. Jx
User
Posted 22 Apr 2016 at 07:28

I'm glad it went well and it sounds like your children were very brave and proud of their dad. Find some time for yourself obviously , but overall keeping busy is a good medicine. Stay strong
Chris xx

If life gives you lemons , then make lemonade

User
Posted 23 May 2016 at 23:21

Oh Rosy, after reading that, I miss David as well!

First, it was massively brave to go away that first time on your own - and now you have done it and survived so you will know better what to expect next time.

Second, if he is a prospective neighbour then I think the onus is on him to prove the boundary is wrong, not you to prove it is right. I hope your BIL told him he needs to instruct a solicitor - you are not under any obligation to provide him with information and it is the seller that he should be asking.

Third, the lost emails - if the worst comes to the worst, you could simply spread the word that all is lost and ask your friends to resend from their outboxes. No-one will think that is weird.

I can't offer you any comfort about the M25 - motorways and business travel are the bane of my life and I think 'wobbly' is a perfectly reasonable reaction.

Finally, I know there is no point saying I hope you had a happy birthday as of course, you didn't. But I do hope that it was as nice a day as possible and filled with memories of happier birthdays in the past.

Keep going lovely - it might not feel like it but you are doing great x

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

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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

Mo

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

xx

Mo

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

xx

Mo

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

xx

Mo

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,

xx

Mo

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

Mo

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'

 
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