This topic contains 51 replies, has 20 voices, and was last updated by 
san 11 years, 1 month ago.
Hi Maureen
Glad your taking part in the survey:-)
The doctor in the practise who diagnosed Slim after 6 months,left to join another practice,over 400 patients left that surgery,my original doctor who diagnosed incorrectly retired at 56 years old,I am sure he will not run out of money in his retirement,and have to manage on a government pension.
When my husband dies,I expect to live on half the amount coming in at present,in the mean time Slim is to ill somedays to even get dressed.Tomorrow a big day,hospital for9am bloods in clinic,big wheelchair race down hill luckily to the other end of hospital,for more bloods,asked could they be done in one place,answer no:'-( ,Then consultant.then I have to push the wheelchair back to the other side of the hospital up the steep incline,to car,like to think I have muscles but its all bat wings:-P
Love Eve
Eve, please don't give up.
You do NOT come across as moaning or complaining at all. I wish you didn't have to post here, I wish none did, but please stay and post what you want.
My husband was diagnosed a year and a bit ago, and so far so good. But it won't always be, and I know i shall be railing and wailing, and it is good to know that i won't be the first, and won't be the last either.
You speak as you feel, and I think your posts do help others as you describe the reality and frustrations of this horrible disease.
I think if this forum were relentlessly positive it would defeat the purpose of support for those who need it. It's uplifting to see the care here, especially when this nasty disease means that the reality is hard to bear.
x
Hi Fiona
Well I must say I am sure you are much prettier than your profile picture:-)
Fiona my story is old now 2 1/2 years, drugs change trials change,so it's time for new people to help those coming on to the forum. Everyone has to have some normality in there lives and this will keep a lot of people going .
Slim and I have left normality behind,I needed to find other people who realise they have joined another roller coaster,and I understand sometimes people do not accept it until the end.So I would not like to force those people in to reality.
I have received private e mails,and say thank you for all your explanations,
As your husband is good,do not go looking at the future,live for today,if you worry about tomorrow you will not enjoy today. Your husband may have years and years of remission, Slim is just unfortunate . Love Eve
Thank you Eve, I hope I am, but just in case, at least in the picture i'm a princess!
I'm not going to offer commiserations as you've said you don't want those, but i'd just like to say that i am grateful you have posted as much as you have and as honestly as you have.
I hope you get the care and support you deserve. x
Hi Eve,
I have only just come across your post. This is a very difficult one.
As you will know I have posted here often in the past. For me this forum has been about hope. We all know this disease is awful but we have all moved on through hope. Yes, sadly we have lost many of our number on our way, all of them much too soon, and we all know what is inevitably there for all of us.
I have stopped posting recently because hope has been hard to find. We have been dealing with hospitals, pain, disability and worst of all, loss of hope. I can't post about this, what does it give to anyone else. Everyone knows it is there, but no one wants to dwell on it. Stephen and I have been processing what all of this means to us. His condition is deteriorating and the doctors are talking in terms of months. We have no hope but we still have to make what life is left to us worthwhile. This is so hard. I know you know this Eve, you and Slim have been going through similar struggles. I am so sorry for you but I know you don't want my pity and commiseration, any more than I want it from anyone else. It is so hard to accept, I don't know why. That too, is another reason that I have not been posting, I could not bear the supportive comments, so kind and well meant. I have left so many simmilar comments for others in the past, and I really do not want to be the one in the position to receive this sympathy. I know that Steve and I are still in denial, and this week has been a bit of a landmark in our acceptance of our situation. I know I am grieving already, I am angry, I am frustrated and I so overwhelmingly sad, I cry at a moments notice, I wish I didn't. We are slowly beginning to have the conversations that we need to have to say good bye, but there are times I just want this ride to stop and let me get off, but there is no exit.
I don't need to tell you any of this Eve, I fear that you are pretty much in the same place. This has not been very well thought through, it's pretty much just a stream of consciousness, but maybe it explains why I am not posting much. I don't want to bring my anger and grief into this place of hope.
Most of you still have hope and in many ways I hope you don't see this, but if you do, keep hold of that hope, there is still life left for you, live every day as if it might be your last, and keep hold of hope,
Much love to you all, but especially to you and Slim, Eve,
Mari xxx
It is not often that I post. Eve, I have no idea what will get you through this, but you will get through Slim will cope. Better than you think. Stephen died last September. He was more worried about me than him.
Stephen could never remember this saying it but he liked it anyway. Yesterday is history, tomorrow is a mystery there is just today. Take every day that is left and make the most of whatever is there.
My heart really is with you. Stay in touch when you are able
Love from Gillxxxx
Hi Mari and Gill
As you will know by now I have sent E Mails to you both, Marie,my best wishes to you,loosing Stephen so soon,what an anyone say to you!!
Gill,I have watched you progress and my admiration on how well you have coped,as you say I will get through this,I just hope it is a long long way away,it is just the knowledge that Slim is on a down ward slope,what ever holds it at bay,I have found this whole thing a massive learning curve,with a consultant who tells me not to worry:-/
I know Slim is unfortunate ,and consultants learn about patients as the Myeloma progresses,everyone is different,plus post code lottery,what I find so differ cult with information,treatment is decided with patient,it's a load of rubbish,there is no choice.
Thank you both for your posting,I hope you both go on to live your life's to the full,as your husbands would wish. My best wishes to you both. Love Eve
I am thinking of you both
Sending Love and Strength to you Mari and Eve xxxxx
Hello Eve,
I can only relate my experience and do not in any way believe it will suit anyone else.
Although Pat and I held out to the very last we both accepted that there would be no fix. I gave up work approx 6 weeks before Pat died knowing the time was near as he was suffering horrendously. That decision was the best I could have made – we shared 24 hrs a day talking with each other about everything including his fears, funeral and also the good times- I was able to support him in everyway both physically and mentally which for me after his death has given me some degree of comfort. Much like Gill Pat was more worried about me than himself. Even though he was suffering so much his mind was fixed on the things he had to do around the house before he was unable.
Pat was a very good, proud but giving man not ever asking for help from others. I cared for him without smothering which I know he appreciated. I am happy in the thought that I have no regrets and left nothing unsaid.
Very early one morning as he was staring out of the window, two days before he died Pat told me " it will not be long now" and then it struck me how he had come to realise hope was gone.
I wish you both all the very best and strength to you Eve,
Tina XX
Hi Tina
Thank you for replying
I had joined the site the year Patrick died,,and at that time there seemed to be a lot of carers on the forum all going through the same things,Min,Gill And I think Sarah or Zara,so there was a lot of banter and exchanging of ideas when there men folk were playing up!!, As we all know its not plain sailing,I remember Min shopped Stephen to the hospital,because he was ill and would not admit it!!:-S
I suppose this was the support I was looking for:-| I know every one has to do it there own way,and accept they are on a down ward track in there own time,I suppose we have been forced into accepting because Slim did not get 6 months remission,he is on Revilimid and if this works he will remain on it until it stops working,so we know there will be no remission,and that's what people strive for. I know there is Dai and Andy,but there not carers,and that's what I was looking for.
We worked it out,the most time we have had away from hospital is 6 weeks,I have watched nurses,being pregnant,having babies and returning to work!! Seems no let up.
I remember you saying about switching on the answering machine just so you could hear Patricks voice,and I have not got Slims voice on tape,so that is one thing I will do,it must make you smile.i have been hoping for a few days when he was well enough to have a break,like this week of no treatment,but his nuetraphils are 0.3 and so fatigued.
Since he has had a clot removed from his artery,he cannot walk very far,beginning to accept a disabled scooter is a good idea,,sorry Tina rambling a bit,looked to see if I could reply private,so it has to be on here.
Anyway thanks again for your post,I know you do not post much now,but when you do,you sound if you are coping well,and learning to enjoy life again,but in a different way. Love Eve
Eve, you can email me anytime you like at pa.davis@virgin.net
Although I do not post very often I do still follow your stories. I would like to be more supportive to carers but quite often just cannot find the words.
I forgot I mentioned the answerphone – I still listen to it often and yes it does make me smile 🙂
All the best
Tina
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I too felt guilty and so sad when I first went back to work after Ian was diagnosed because he was stuck in a hospital. Be positive, Ian is coming out of hospital after one year and the myeloma has stayed stable since April after 4 cycles of CTD. We know that he will require further treatment but we are going to enjoy the time we have now and not think about the future yet.
I read a post about feeling like a butterfly with the wings clipped, that is how I feel too. We used to have such fun and visit lovely places. I'm glad we didn't know what lay around the corner.
I also pray and have faith which helps me.
Maureen
Hi husbandof and Maureen,
There is a lot of guilt about because your partners probably feel guilty that they are ill and they are affecting your lives as well. Guilt is a pointless emotion, it smoulders and stops you being who you are. Whilst things will never return to how they were you should try and be as you were for that possibly helps the sufferer by seeing that they are not a burden to you. After all, we all want to see our partners being happy and alive.
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