Hi smilingsue,

It sounds very much like cachexia.  My husband actually was sent to a cachexia clinic.  They were brilliant, not that it helped my husband at all.  They weighed him, took measurements, suggested thikngs that he could try eating, exercises to do to try and build muscle a little, very basic, most of those you could sit and do them,  When we visited they had a dietician, a Dr, another one who I think was a physiotherapist.  They explained they treat the whole body.

I would assume they would have similar in the UK, I am in Australia.  My husband was referred to them by his oncologist.

Sue

Thank you for taking the time to respond Sue - I will look into that.

I hate to ask but is your husband still with us?

Thank you again.

Hi smilingsue,

No, my husband passed away 18 months ago.  He had esophageal  cancer, which spread to his lungs.  He had lost 1/3 of his body weight though when he was referred to the cachexia clinic.

Your welcome.  Hope your friends continues to defy the timeline he was given. 

Sue

Thank you.  Yes, I'm coping ok.  Lots of family support, which is great,  I've made some very dear friends on here, who were and still are a wonderful support.  

I tend to agree with you, It was very much like that with Neil, and eventually he stopping trying to fight it.  And as much as I miss him, I really do get some comfort from the fact that he isn't suffering any more.

I haven't heard of your friends cancer. but hope he isn't nearing his final weeks or months.  Sorry to hear that you feel that may be his situation.  

Best wishes to you both.

Sue xx

Thank you Sue. 

They are my feelings at the moment, seeing someone suffer when you know the chances of them making a recovery or even having a reasonable quality of life are very low is very tough and although I feel guilty saying it I would rather he wasn't suffering at all.

I am glad you seem to be getting on ok - and hope you continue to do so. Thank you.

Thank you Aus Sue and smiling Sue for sharing that "unsayable" bit about feeling guilty at feeling relieved that someone no longer with you is no longer in pain or sufferring.  We lost a family member to a brain tumour after a long and bitterly disabling fight, and I lost my mum five years ago today after a multiply crippling stroke which brought on global cognitive impairment, hospital never even mentioned she had vascular dementia, but for her final years and months she wasnt "her" except for brief moments, interspersed with expressing horrific fears and having hysterical violent outbursts. I can remember sitting crying in the car and punching the windscreen saying "I just dont want to do this anymore" about visiting her, which meant driving 100 miles to be scratched, hit, and sworn at, and then feeling horribly guilty that I didnt feel I could cope with seeing her in her reduced and terrified state any more, knowing there was so little anyone could do to ease her fear and distress, and for her dignity.  Those who share the journey with friends and loved ones facing harsh and life threatening diseases and conditions need love, care and kindness, and to try to be gentle on themselves. I got furious at the consultant who told me I must "manage my expectations" about Mum's situation, and Im now learning how much all of us have to learn to do that when facing cancer.  Mind you, we sometimes need to remind the professionals that we do have reasonable expectations of them working alongside us and as far as possible, on our terms. x

It is difficult isn't it? I guess for the professionals, it is just a job and although they do it very well they are so much more detached than for us when it is people we care about and love.

Hi Smiling Sue,

It is very hard to watch someone suffering when you can see they have no quality of life and know they aren't going to recover, and you do feel guilty even thinking it is better for them to not be suffering, try not to though,

Hi Poland19,

Dementia really isn't all that different to cancer, the stages we go through as a carer, or loved one are the same.  My mother had it and she changed so much, just as yours did.  We did have some quite amusing things happen also, not just the paranoia, anger and violent outbursts.  I have a chuckle whenever I think of this one.  Mum had a problem with one of her teeth, so a dental appointment was made.  The day came and Mum refused to get dressed, no-one was going to tell her what she had to wear.  She insisted that she would wear her pyjamas, with her bra on the outside.  We did at least convince her to wear a beanie instead of underpants on her head.  She liked to wear her underpants on her head to keep warm. It wasn't worth the argument to force her into proper clothes.  The poor dentist, I felt sorry for him, Mum wouldn't let him even look at her teeth, let alone fix the problem, she wasn't having anyone experiment on her.  When she passed very peacefully in her sleep we all felt relief and sadness.  Mum would have been horrified if she had been aware of how she behaved.

Take care.  Sue 

Awww that story made me smile and it is nice you can chuckle when you think of it.

At the moment they have taken the main pain relief away from my friend as they think that might be causing internal bleeding from prolonged use and are investigating that as a cause of the chronic anaemia he has. So he is in more pain than he was.

But I am not sure how much better he might feel if they get the anaemia slightly more under control? Although obviously they would have to find another source of pain relief.

I am confused whether the symptoms - fatigue, loss of appetite, sleeping a lot, etc, - are mainly due to his chronic anaemia or whether they are cachexia - or whether it is both really as they are linked.