[GillParticipant]

Hi All

I haven't been on for a while because, although I don't need to only post when everything is goodness and light, I felt a bit disloyal posting about Stephen being so horrid.

His prognosis is not good and we know that if next Christmas comes we will feel lucky. He has just finished his 3rd cycle of revlimid and is on dexamethasone. We have been told that he will have to be on dex for the rest of whatever life he has left.

Very selfishly I am heartbroken to think that for the rest of the time that I have with Stephen I will be living with a man that is not Stephen. Dex has a very bad effect on him and he changes from a gentle laid back teddy bear into a short tempered, unpleasant nightmare of a person. Knowing he will not be here for much longer I want to spend as much time with him as I can but find myself staying out of his way and making excuses to be out, in another room busy. Anything to not be in his company.

I am slowly learning to say " yes" to anything he says but it is hard as our relationship has never ever been like that.

I am starting to wonder if the treatment is worse than the disease

Gill

[eveParticipant]

Hi Gill

Gill you should never feel like that,this is when you need this site the most,because it,s hard to talk to family about it,and most of us carers have earned are stripes with DEX.:-/

I am able to say to Slim is it the DEX talking or Slim and he does calm down,its a bit harder in public ,when he makes a remark that,s uncalled fore. I found he was better on a reduced dose!!!Standing waiting at a check out has been the worst,just wished the floor would open up and swallow me:-( told him I would not take him out any more if he carried on,he behaved himself until he found some one else to have a go at.:-P he has never suffered fools lightly and Dex just makes it worst.
Must say thank god he is off it now:-)

May be instead of saying yes and keeping out of his way,its time to say no and explain you do not want your memories of him to be soiled by his Dexitude moments!!!!!!!.
Stephen must be scared about the future,that man who was so laid back,because he does not want to upset you,must be worried what the future holds,so you need to sit down and talk,it does work Gill.Love Eve

[brochoParticipant]

Dear Gill what reason do they give for keeping Stephen on Dex? I know it helps a lot with pain relief but there are other drugs that would work too. I am now on Prednisalone which is as effective as Dex but much kinder I havent felt like tearing lumps of anyone since I have been n it . I would have a word with the specialist nurse and explain how awful Dex is for you There must be an alternative that wont rob you of precious time together . I hope you get this sorted soon Gill it seems so unfair that you have to deal with this as well Lots of love to you both Bridget x

[jmsmythParticipant]

Dear Gill

I am so sorry to read of the horrible time you and Stephen are going through. My heart goes out to you both. The only thing I know about Dex is what I read about it on here. As Eve and Bridget say is there nothing else he can take? I have been following your journey and am so sorry that you find yourselves here. My love thoughts and prayers are with you both.

Love Jean. xx

[HelenParticipant]

Dear Gill
I'm so very sad for you both. I think a chat with specialist nurse is a good idea, there may be something they can suggest. Stephen must also be feeling very down which might make the dex effect more profound if he has been told he's to be on it permanently. Also there is sometimes an irrational personal withdrawal from the people you love when you hear that treatment is changing again, I know I feel like that at times now but it was worse at the beginning and on the dex.
Have strength
Helen

[MinParticipant]

Dear Dear Gill,
Its so hard being a carer and knowing that the time you have with you loved one is under the clock so to speak. I know exactly where you are coming from.
Peter was on prednisalone steroids for quite a long time before Dreaded Dex. the problems he had with prednisalone were more bone damage due to taking oral bone strength tablets.
But its a gentler drug taken more frequently rather than the heavy pulse doses of dex.
My regret is not discussing the dex problems with Peter, I used to say to him this is the dex talking and my gentle man who never aswered me back in 40 yrs would scream ? dont tell me its dex?
I think it was a mix of dex and shear frustration at knowing his time was ebbing away.
Dont let that happen and find things to do and talk about, If necessary ????.write it all down. I know how difficult it is to have an argument at times like this but the written word is less abrasive as you take time to think each sentence rather than spitting out bile.
The treatment is worse than the disease when it takes away the man you love and replaces him with his dex alter ego..

Try to remember those days of PMT and how awful it made you and how uncontolled your emotions were That is a small amount of the condition dex imposes on them.
Its easy for me to tell you from a sitting on the fence point of view.
But believe me I recognise how you feel and did the same to some extent as you did but not dealing with it is eating you up and not wanting to upset him or you at this difficult time is making it worse.
Write it down and you will feel better and so will he.. He didnt want to tell me how he was feeling, because he knew he would get upset in dealing with it so we wrote the annoying things and it enabled us to discuss it properly? Pathetic really after 40yrs we could not talk about it but this was because we only ever skirted around the issue and made each other unhappy.
These are exceptional circumstances, and few people have to deal with the problems MM throws at you never mind the bludy treatments.
I hope you can overcome the problems and have some pleasant memories of writing love letters ?
Love MIn x

[DaiCroParticipant]

Hi Gill,

I do hope that you both find next Xmas with Stephen in a position where the medics have found a treatment that is keeping mm at bay. I understand your concerns re dex and attitude etcetera… I hope that Janet never has to feel as you do now and I will certainly try to ensure that is so… but who knows?

I have said it before and I will say it again… you and Stephen were my mentors and leading lights when I first came on board and I am saddened that the disease has got such a hold on Stephen and that the man you knew is having to fight to stay focussed when the dual dangers of hard meds and fear are his constant companions.

I hope the rev kicks in and helps Stephen to cope with the dex and that any such improvement brings a little hope and joy back into your life.

With fond regards

Dai.

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