brain mets.

User

Posted 25 Oct 2015 at 18:58

Can anyone help - my OHs condition is rapidly going down hill due to the fact he is losing the use of his legs. No new pain, just very heavy from the knees down. Also he has developed a lump on the right side of his skull. Last Wednesday he had a bone scan and is for a CT this Friday.

He is also very confused at night (all night) just an odd time throughout the day. Mentally he is falling apart. His psa is doubling every 2/3 weeks, I know it's only 46 now but going the wrong way.

Had an MRI in Aug. all was well.

Thanks - Val

User

Posted 25 Oct 2015 at 23:15

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

User

Posted 25 Oct 2015 at 23:30

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

User

Posted 26 Oct 2015 at 05:25

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'

User

Posted 26 Oct 2015 at 09:08

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

User

Posted 26 Oct 2015 at 11:25

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

User

Posted 26 Oct 2015 at 15:53

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

User

Posted 26 Oct 2015 at 22:14

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

User

Posted 27 Oct 2015 at 04:42

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'

User

Posted 27 Oct 2015 at 07:49

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

User

Posted 27 Oct 2015 at 08:50

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

User

Posted 27 Oct 2015 at 08:56

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

User

Posted 27 Oct 2015 at 19:58

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

User

Posted 27 Oct 2015 at 23:44

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

User

Posted 28 Oct 2015 at 17:53

My thoughts with you both to. BIG hugs xx

User

Posted 28 Oct 2015 at 18:14

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

User

Posted 28 Oct 2015 at 19:36

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

User

Posted 28 Oct 2015 at 19:47

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

User

Posted 29 Oct 2015 at 00:10

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.

User

Posted 29 Oct 2015 at 13:34

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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