[susancParticipant]

Hi everyone
this is my first time so be gentle.My husband was diagnosed with MM in jan 2011. Since then it has been a roller coaster ride.He was on Myeloma X1 trial at first but so many things happened ie DVT, back collapse, Sore on his back, weight loss and no appetite to name but a few . He has been on velcade for the past few months. I have given up work to look after him and feel low at present as there is no light at the end of the tunnel. His personality has completly changed and cannot be bothered to do anything ,this is not what was expected and noone advised us that this would happen . Is this normal or just unique to Ken ? Can someone who is going through it please contact me , I feel the need to offload. Thanks
Sue

[PerkymiteParticipant]

Hi Sue, Firstly welcome to the site, not a thing you ever wanted but the people on here are good people and you will get lots of support I am sure. Secondly if you have any questions about Myeloma you have three avenues. One, the site forum, two, the site itself which has bags of UP-TO-DATE information and lastly the Myeloma UK Nurse – her number is on the site and it is free.

You will quickly learn that Myeloma is a very individual decease and whilst everybody is on the same road we are all in different avenues on that road. Having said that there are a number of points where our avenues either cross or are the same for a period.

I would guess that his personality change is due to the drugs especially if he is on Dex which we call Dex-attitude because it does change your personality whilst you are on it. Moody, depressed, angry for no reason – they are all related to Dex.

I was diagnosed in 2009 and prior to my Stem Cell Transplant I did have emotional problems with the various drugs I was taking. My wife just said it was not me and ignored my by bad bouts. I am at present on a low plateau Paraprotiens at 2.8 (never got to full remission)and I am drug free, our life is back to normal. There is a light at the end of the tunnel it is rather dim to start with but it will brighten up I am sure ? just stick with it.

Kindest regards ? vasbyte (it is a South Africans word which means grit your teeth and tough it out/get stuck in)

David

[jmsmythParticipant]

Hi Sue

Welcome from me as well. I know you don't want to be here but you will get the support and friendship that you need. Ken has had a rough ride but David is right this d**n disease is so individual. My husband smouldered for 6 year and started treatment in June. I knew about the Dex and dexitude from the postings on the forum but when Frank started to take it – all I can say is 'oh boy'. He was everything that David said and Frank described it as "an alien taking over my body and I have no control". I think the withdrawal days were the worse. He is now waiting for stem cells to be harvested. Sue there is light at the end of the tunnel – you have to believe that. Since Frank came off the Dex he has started to go out – specially the pub to watch United play. I hope kens mood starts to improve but if you feel like a rant or a good moan come on here – feel free.

Take care
Love Jean x

[susancParticipant]

Hi there
thanks for replying.Ken was on Dex for sometime but has not had any since the middle of October. The problem with him is because his back collapsed and his mobility became poor he just dosent want to go out anywhere.We only ever go out together to the hospital.The life he had before has gone and it seems to be a vicious circle, the more he stays in the more he wants to . I have to get out especially since I have given up work. My family and friends have been a godsend but it is good to speak to someone who is going through it Thanks Sue

[BabsParticipant]

Hi Sue,
I was diagnosed July 2011 and had SCT March 2012,
My husband gave up work to become my full time carer last September, our life has been turned upside down, at one time I hardly left the house except to attend hospital, was on so much Oxy Contin and Oxy Norm I was not in control of myself,then I overdosed, my husband picked it up and took me to the local hospital where the Dr gave me injection which took me through cold turkey(an experience I hope not to go through again),Had radio therapy on my back which for me luckily took away the pain due to my collapsed and fractured bones BUT now I am on the UP, feel the best I have since before diagnosis, Still have good and bad days, happy and tearful days, often think of what our life was before we became carer and patient, much preferred husband and wife, best friends even, BUT am so lucky to be alive and this site is so helpful to give both you and your husband hope for a future, accepting his capabilities and making the most of your lives together.
As has been previously been said MM is very much individual to everyone, but use this site to take hope that your husbands condition can and will improve, it is life changing for you both and this time of year is particularily difficult, but you have to plan for the future.
Take care
Love Babs

[bandityogaParticipant]

My husand has partial paralysis as his spine started to crumble when the steroids started attacking the tumour. We do not know if this will be permanent but he was only diagnosed on 24 October and we have had to deal with the diagnosis plus a spinal operation. He had an infection in his wound and had to return for further surgery. We are now waiting for the wound to heal and I am travelling 40 miles each way each day but I miss him so much and keep praying for a miracle.

[eveParticipant]

Hi Sue

Well I think this is worst it can get the only way is up now,surgery done,see how his mobility goes,do not be afraid to use a wheel chair until he feels a lot better, then start on the chemo again,he is not the first and will not be the last.

As for him feeling low,it is understandable,try to do something every day,even if its just a drive in the car,plus make time for yourself,claim anything you are entitled too.,get help in to keep the house clean with allowances and make a little time for yourself , Eve

You will get there,by the way,we are in New Zealand after two years ,plasma toms and lesions on shoulders and skull,plus two lots of chemo,so there is hope for you yet.!!!

[bandityogaParticipant]

Hi Sue

I am still positive that there is light at the end of the tunnel. At the moment my husband is still in hospital as his psinal wound is still slowly healing. I am spending Christmas with my son, daugher in law and my 2 granddaughters. They have been a great support for me.

Have a nice Christmas in New Zealand and god bless

Maureen

[PerkymiteParticipant]

I know it will be hard but have a great Christmas. Enjoy your family.

Kindeste regards – vasbtye

David

[bandityogaParticipant]

Hi David

Ian is in better spirits and is eating better. His psinal wound is looking better and he is moveing his left leg and alos has movement in his left leg but his hands are weak.

I am thinking positively and we will try and have as nice a Christmas as possible. He is allowed a small glass of champagne. It will be very hard as this is our first Christmas apart but I am sure my granddaughters will keep me busy.

Have a nice Christmas and god bless.

Maureen

[LeedslassParticipant]

Hi

This is my first time on this forum although i have used Myeloma uk information since the first day my husband was diagnoised in 2007. Reading your post is exactly how i am feeling at the moment. I feel i shouldnt be feeling this way after all this time but it has been a long long road. My husband Terry was diagnoised with Multiple Myeloma in July 2007 and had a stem cell transplant in Februay 2008 and went into remission in June 2008. However as we advised the Myeloma did return and after several cycles of treament he has been on Revlamid since September and the change in him and our lives is unbelieveable and i find it hard to talk to people about it. My family and friends are amazing but they dont understand the day to day living with it. I have finished work and now full time carer to my husband who at 58 is now wheelchair bound and doesnt want to go out much after we use to have such a full active and social life. I feel like a butterfly who has had its winged clipped and feel guilty for feeling this way. I was thinking about speak to my gp about counselling although i already feel a little better reading this post and wish i had done ages ago.

[eveParticipant]

Hi Leedslass

Sorry but I do not know you name,I see this is the first time on this site,how you ave managed without it,I do not know.
You need some form of help,but only you can decide,as good as family and friends are,they have no idea,what or how they can help unless you tell them.

This illness brings depression with it,not just for the patient but for the carer,it,s recognising that is the problem..
You have to make time for yourself it might sound selfish but you do need time away from the Myeloma Bubble,even if is just a coffee with a friend.
I also think you have to be direct with your husband,if he is depressed get help,if it is the fact he is in a wheelchair and does not want to go out,then make plans to go out,if he will not go,leave him in and you go.his choice,you will have to toughen up.
There is no reason why you both cannot have a life,may be not what you expected,just different.Eve

[bandityogaParticipant]

Hi

My husband Ian is still in hospital and we don't know if he will be able to walk or be in a wheelchair. He was 57 last week.I too feel like I have no life. I travel 20 miles back and forth to the hospital each day, and on at least 3 days, twice.

I do pilates on a Thursday morning which is a release for me and sometimes a go for a coffee with freinds.

I yearn for our old life as we were both so active, swimming, walking and travelling. I cry when I think back and don't know where this will lead but I pray for Ian every day and want him back home. I get so lonely without him but I too will have to give up work to be his carer. Life is so unfair.

Maureen

[EvaParticipant]

Maureen,
This is Eva- am in London- can't write properly- am thinking of you, will contact middle next week.

[bandityogaParticipant]

Hi Eva

Hope you are well and look forward to hearing from you when you return.

Ian has an infection in his bed sore. I am so frightened he will get sepsis again.

Maureen x

[Author]

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