Hi model-T - I am so sorry to read this. Once the doctors decide that there will be no further treatment, all efforts should be directed to keeping the person as calm and pain free as possible; unfortunately, it sounds like your OH is having to cope with loss of sensation rather than pain (which is perhaps a blessing in disguise but no less distressing for you all).
Do you know that he has brain mets? Could it be bony mets of the skull instead as these would be more likely to present as a growing lump. The confusion could be to do with the level of calcium in his blood, in which case it can usually be sorted out quite easily. Alternatively, does he have a particular painkiller in the evening that could be working too well? And finally, is there any indication that his sight might be failing as that can cause more confusion at night than during daytime?
Sorry to bombard you with questions - the problem is that when men get to the final stages of this disease, the circumstances and day to day experience can be so very different for each man. Try to make sure that you get some rest as well and, if possible, some time away from the responsibility. Your man will not fall apart if he knows that you are there and coping with it all alongside him.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Val,
Your OH is obviously in a bad way, and my thoughts and prayers are with you.
The last thing I want to do is offer any silly simple solutions, but when you say your OH is falling apart mentally, this might just be a consequence of the infection. There are some really nasty ones lurking in Urology wards, I picked one up when I was in hospital, and for a couple of days I was totally delerious, I had no idea of time, where I was etc, but I recognised my wife's smile when she visited.
So if he is strong enough to fight off the infection he might yet return to something more like his old self?
As Lynn says, it will be a great comfort to him to know you are there and caring for him.
:)
Dave
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morning val
read your post if I could offer any help I would, but all I have are my thoughts for you both
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Thinking of you both too Model T but can offer no advice since your situation is beyond my knowledge.
Just wanted you to know that we are there with you in spirit and wishing and hoping the situation improves for both of you.
Lyn has given you some very worthwhile advice (as always Lyn!)
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Sorry your partner is being affected as you describe. His scans will be analyzed and hopefully treatment given which will ease the effects he is experiencing.
Barry |
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Val
the advice given by Lyn is spot on as usual.
The incidence of actual brain mets is rare although they can and do happen. The formation of skull mets is much more common and they do tend to result in a bony lump which shows up more than say one in the leg, which is hidden by fat/muscle etc. If the lump is getting bigger it is probably calcifying which can push too much calcium into the blood stream. Symptoms of this are weakness, aches and pains in the bones, tingling sensations, cramps and sometimes confusion.
His PSA doubling time is pretty rapid and this may also contribute to his weakness and loss of sensation.
I am fairly sure there are medications that can slow this process down a little bit but regrettably as this horrid disease progresses their benefit can be lost to even more side effects.
So now the medical team and any supporting team you have will try to work out a plan to keep your Husband as well and as comfortable as they can.
I am thinking of you and your family
xx
Mo
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Thank you all. Have been with Mike all day, he had his CT scan today which showed huge brain tumour, bleeding, swelling - gave him large dose of steroids to try and reduce swelling. Had to dial 999 early this a.m. as he totally lost the use of his legs. His scan also showed multiple lymph nodes, last year just a couple. Although tears kept coming throughout the day he took the whole thing very calmly, saying he knew something was very wrong. Today he appeared prepared but scared. Over the last 5 years since dx I have tried to shield him was the nasty side of this awful disease and yet it now seems he is stronger than me, he thanked me for 50 wonderful years and said he worries for me after he is gone. Val
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hi val
total lost for words for you, sharing a few of your hubbies tears at the moment, you are a great couple keep a hold of his hand
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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So sorry to read where you are, my thoughts and prayers are with you both. Hope you can get the best help possible in the circumstances., Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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I am so sorry Val that the outcome wasn't better than this.
We do the best we can for our men, in looking after them, making sure they eat the things that are good for this disease rather than what they think they want! and we tend to mother them too don't we.
Your husband has quietly been coming to terms with this result in his own way as shown by part of your post
"Although tears kept coming throughout the day he took the whole thing very calmly, saying he knew something was very wrong."
Throughout the days leading up to the scan he has been worrying about you and how you will cope and that is a measure of his love to you, that he can think of you at a time like this. 50 wonderful years together is something of an achievement and I hope that the closeness you have developed during that time will now help you both on the next stage of his journey.
Be strong for him, and yourself. I know it's very hard but if he sees you worrying about the future it will make it harder for him.
We are here for you if you need us so please use us. Any advice just ask, somebody will know or have experienced it.
Thinking of you both
We can't control the winds - but we can adjust our sails |
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I am also thinking of you Val. We are all here to give you support and somewhere to express your feelings as you go through this phase of your husbands illness.
Regards, Fiona. x
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Hi val,
So sorry to read that you're both having such a hard time. Hope the steroids may help alleviate some of his symptoms.
Sending you a big hug val, stay strong.
Lesley xx
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hI Val
Such an awful situation for you both, you must both be very frightened. I hope you have the support of close family and friends and from a local hospice to give you advice and care. My thoughts are with you.
Love Allison xxx
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My thoughts with you both to. BIG hugs xx
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Hi val like everyone else my thoughts are all with you both at this horrible time.
I hope you get proper palliative care and hopefully hospice care if there is time. 50 years is amazing and think of all the lovely memories within that time that you will always have, no one can take them away from you.I have tears in my eyes and feel for you l can only imagine how you must be feeling, stay strong
Take care, Chris/Woody
Life seems different upside down, take another viewpoint
Edited by member 28 Oct 2015 at 18:18
| Reason: Not specified
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Val
I am so very sorry things have moved in this direction.
Now the medical team and hopefully the hospice team should move into top gear to give you all the help and support you need. I know this will be so very hard for you too.
The most important thing right now is to take each day as it comes and to ensure that your Husband is given as much control over the rest of his time as he possibly can. There may be things he wants to put in place with you and his medical team too so, hard and as emotional as it is, try and be as strong as you can to help him to do just whatever he can.
If you ever need someone to just talk to do not hesitate to private message me, if I can offer any support or help I will be here for you. For the next 8 days I am 4-5 hours behind you but I will be back in England on 6th November.
Thinking of you every day so please make sure you look after yourself too.
my very best wishes
xxx
Mo
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Hi Val,
So sorry things are not going too well. I really hope they can make things as comfortable as possible for Mike.
Thinking of you both.
Steve x
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Val
It's amazing how even in the worst of situations, people think of others first. My dad was more worried about caring for mum than himself. Thinking of you both at this terrible time.
Paul
Stay Calm And Carry On. |
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Val, I don't post here very often, but I was moved to write today to offer a virtual cuddle to you and your hubby. No words at the moment can make this situation better for you, but do feel our love and support.
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Val, I don't post here very often, but I was moved to write today to offer a virtual cuddle to you and your hubby. No words at the moment can make this situation better for you, but do feel our love and support.
User
Again thank you all for your thoughts and prayers. At last today Mike had the much awaited MRI (head shot only). MDT meeting and outcome will now be Monday. Visited by very nice lead oncology nurse who said it was a blessing in disguise that this last scan was delayed as when she saw Mike on Tuesday she would have had to report he was too poorly for any further treatment, but today the dexamethasone seemed to be doing its work - much less confused, able to understand what was being said. She feels the line of treatment will be radio therapy to skull - anything from one to a maximum of five shots. Maybe Zoladex cancelled and a different drug in its place. If it works, then hopefully 1-2yrs if not - months. He took this quite calmly. There is a slight improvement, but for how long? Can stand, but not walk yet. Val
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Hello - it has been many weeks since I last posted. It has been a real rocky road - after two aborted attempts at neuro surgery (too unwell) it was given up, surgeon thought we had got to the stage where he would not make it. Mike gave up on solid food and still will not eat. Fluids by this time was only taken in sips. Just before Christmas he was transferred to the hospice - he looked dreadful. Today they have started physio, he has not been out of bed since end of October - his diet is terrible - now taking fluids but at least drinks 2 or 3 cups of liquidised soups daily. Home maybe for a while in the not too distant future - but I will need a lot of support as there is only me - no extended family. Any ideas at what I can hope for? all will be gratefully accepted. (We are both in our 70's). Val
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Hello Val.
I am so sorry that surgery was cancelled due to your husband's health.
I am sure that there will be somebody who has travelled your road who will be along at some stage with their offers of advice.
I really don't know what else to add except to say I really feel for you both and I hope that his stay in the hospice will give you a respite and that they are be to make him as comfortable as possible.
Thinking of you
Sandra
We can't control the winds - but we can adjust our sails |
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Hi Val,
I cannot offer any first hand knowledge, but I have always hoped that when my time comes, there will be lots of practical support from the NHS nurses and MacMillian nurses etc.
Make sure that all the professionals know that you are on your own and need all the support you can get.
Your role is to give your man the love which keeps him going, you should be able to leave the practical stuff to others, so keep posting, and if the professionals let you down let us know where you are and what we can do to help.
:)
Dave
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hi val
sorry to read how things have gone, getting mike home sounds a nice idea but is it very practiable will you be able to cope on your own, its something I feel you need to discuss with the hospice, sorry I cant offer any other advice
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Val
I am so sorry things have gone this way my heart aches for you.
The physio team will do their best to get Mike able to transfer from his bed to a chair, and then hopefully walking a little. It will be really hard for him if he has been in bed for almost 2 months. So don't be surprised if he looks exhausted after any efforts. The physio team will take things very slowly at first and it might take a little while.
The hospice team should be able to give you all the advice and help you need if they think it will be possible to get Mike home. They will look to see if there is anything that needs to be done at home, like providing a specialist hospital bed and air mattress and possibly using a room on the ground floor if you live in a house not a bungalow. They should cover every need including getting you some at home care help.
Has Mike indicated where he wants to be? sometimes patients say that they feel more comfortable in the hospice where everything can be right on call when it is needed. Other patients would move heaven and earth to be at home.
See if you can have a chat with the pastoral team at the hospice (the Physio, the Occupational therapist and the social worker) they should be able to answer any questions you might have.
I am thinking of you
xx
Mo
User
Hello - Mike did not make it home, developed yet another UTI and this time it went haywire. The last couple of weeks have been hell for us both but eventually the hospice got the right drug combo. Mike became calm and more settled. He also developed a chest infection (never had one in his life) and today he died very peacefully, infact he looked like the Mike of old. His road was very rocky but he is now at peace. Val
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So sorry to read of your loss, my condolences to you and wish you strength for the future.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Val
I am so very sorry for your loss, hope you are looking after yourself
xx
Mo
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Oh Val, I am so sorry to read this. I know you hoped that he would come home but I guess in the end, the most important thing to Mike was to feel safe and loved with as little distress or discomfort as possible. You have been so strong and all I can wish for you is that you can find just a little more to get you through the coming days, weeks and months.
Sleep peacefully, Mike
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Val,
I am so sorry to hear this. Even when expected, the loss is devastating. What a difficult time you have had the last few weeks, no words can make up for it but just know that there is much love and care sent to you from this community.
Fiona.xx
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hi val
a big virtual hug from me, sorry to hear the sad news
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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My heart sank whilst I read this Val. So sorry. I hope you can find strength
Chris
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Val
So sorry to hear of your loss, you are in my thoughts.
Thanks Chris
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Val,
I'm so sorry to hear about Mike's passing. I wish there was some way of taking the pain away at this sad time. Remember, we are all here for you when you need support.
Steve x
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I'm thinking of you and your family and friends Val.
I'm so glad that at the last you got your "old" Mike back and that's one of the better memories to hang on to.
The knowledge that, at last, he was able to find some measure of calmness and relief I hope will give you some comfort.
As others have said, you've had to be strong for such a long time and you'll need to be strong for just a little longer although I hope your pain has eased knowing that Mike is at last at peace.
Best Wishes and virtual hugs along with the virtual support
Sandra
We can't control the winds - but we can adjust our sails |
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So sorry to read this Val, my thoughts and condolences are with you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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So sorry to read this Val,
My sincere condolences go to you and your family
Luther
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My condolences too Val. I know you were expecting this but it does not make the passing of a loved one any easier. You had many good years and memories to treasure, even though sadly overshadowed by recent unhappy ones.
Barry |
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Thank you all for your kind thoughts - most of all I would like to thank everyone on this website for their postings - you will never know how much help it gave me in Mikes 5yr. struggle. I knew nothing of prostate cancer then, I think now I could give a lecture on it!!!! Val
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Hi val,
My sincere thoughts are with you at this sad time for you and your family. So glad it was a peaceful ending for Mike.
Lesley x
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Val just seen your posting. So sad to see Mike's struggle come to an end. He is at peace which I hope gives you some comfort at this difficult time. RIP Mike.
Edited by member 23 Jan 2016 at 19:24
| Reason: Not specified
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Val, I have only just read the sad news and my heart goes out to you after all this time. So many people losing the fight just lately, keep the good memories close to your heart and recall them always.
Regards Chris/Woody
Life seems different upside down, take another viewpoint
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Oh Val
I haven't been on for a few days and have only just seen this awful news. My sincere condolences on the loss of your beloved husband.
The last few months have not been in any way easy for you (understatement of the year, I know).
It's hard to put my feelings into words when I read of what your lovely husband suffered, I'll just say that we are thinking of you and are thankful that he is at peace and that you saw a spark of your man come back. I do believe that will be a source of comfort in the days ahead.
With much love
Allison xxxxx