This topic contains 10 replies, has 5 voices, and was last updated by 
tmc 11 years, 11 months ago.
Hi everyone,
Husband diagnosed with MM end of Jan 2012, had spinal surgery, then radiotherapy, then onto chemo, he has lost quite a lot of weight, and has most certainly changed. He questions everything you are doing and on the whole doesn't think it's right, he never used to be like this, even our daughters are noticing this.
He has become very cautious,demanding and even critisizes the food I provide for him, I just wondered if anyone else is experiencing the same.
I understand it will be the cocktail of drugs he is on, but it is such a change.
Really do need to chat, the daughters are too close, need an outsiders opinion, please. Gail
Hello Gail
Welcome:-/ to the site, I'm sure a carer will come along soon to talk to you. I'm another sufferer and can only comment from my own experience. You don't say if your husband was ill before his diagnosis, but even if he was, 3 months is a very short time to get your head round the impact of developing life changing disease and how it impacts on life. I expect he will be very angry, depressed, worried and in fact every other negative emotion you can think of, at this stage. You are bombarded with information, treatment, side effects and guilt from the minute you are told what is wrong and it takes a long time to adjust. I'm still adjusting 15 months on.
I would, however, have a word with one of the specialist nurses at your hospital as soon as possible, about the mood changes, dexamethasone alters mood and it can be quite difficult for some people to handle the mood 'drop' when you come off it. I found myself growling at everyone, like an angry bear, about the injustice of life, if it wasn't going my way, or any way! It is about anger and lashing out at everything because you cannot change the situation you have found yourself so suddenly in. I am aware that my husband shall probably be beatified just for putting up with me over that last year or so. 🙂 Specialist nurses can also direct him (and you ) towards counsellors which might be helpful. There is no harm in broaching this, in fact sooner rather than later if its bad. I hope this helps, let us know how you get on.
Love Helen
Hi Helen,
Thankyou for replying, yes he was ill before this, we retired March 2011 to get on with a steel yacht he was building for us to live on, everything was going fine until about Sept, he was needing to sleep a lot and having severe back and side pain, to the point of shouting out in agony, this was awful.
Of course he wouldn't go to the doctors, this went on for a month then I insisted he went, they came up with allsorts of diagnosis, pulled muscle, cracked rib, strain, and so on, he ended up over the christmas period confined to bed in absolute agony, still not wanting any help, so in Jan I called the doctor out and suggested he go to hospital because this wasn't getting any better, then after a week of tests this was the result.
It has now ended all our plans, no way will he be able to carry out his dream, he now realises this, so to know just how he is feeling I cannot begin to imagine.
Thankyou for your advise I will be looking into this.
Love Gail
Hi Gail
I think I just answered your post on newcomers. I guess I should have answered here under careers. sorry.
I am so glad Helen has explained the emotions form an MM patient point of view, I also had all those emotions as a career and it's not easy to take or understand when everything is still so new and raw for you.A complete change of life for you and the family is hard to adjust too but it can be done and then it won't seem as worrying or upsetting.
Take care I feel for you it certainly can be like living with the energizer bunny at times.
Love Teresa.
Hi Teresa,
Thankyou for your support, I wish I had found this site a lot sooner, It really would of helped with all the frustration, anger, sadness, why us feelings.
Please don't apologise, I got a bit mixed up and posted on both, you take care, and hope to speak to you soon.
Love Gail
Hi Gail
How are you getting along?
Are things calming a little yet or is everything still too new and complicated to think about?
So many issues to deal with in such a short time it is so overwhelming.
Hope to hear from you when you feel like it
Love Teresa.
Hi
We have been in France for the last few weeks and Stephen (mm husband) was not very well but although we have internet access it is not always there (blinking French countryside!!)so I am only just catching up with the posts on here
Gail your post really hit home. Dexemethasone is the most evil drug in the world. It does a great deal of good but the affect it has on people turned my teddy bear husband into a nasty, bad tempered, verbaly spiteful person.
The only time I have been angry with Stephen's wonderful team of medical peeps (people) is over the Dex. I was told that they do not warn people of the possibility of "Dexatude" (I made up the word to describe the affects) as "not everybody suffers from that" Yeah try looking on the mm uk site.
When he was put on a lower dose to try and steady his mm the mood changes were still there, but at least he knew it was him and not me. He would calm down quicker and say sorry not scream "It's not me It's you!!!"
I dread to think what happens if someone who is already abusive is prescribed dex. Stephen has always been so laid back, calm and quiet that to see him so cross and loud was horrid.
I knew it was the medication but it still hurt badly. Good luck and Fingers crossed that your husband's medication (husband' s name?) knocks his mm into touch soon and for a long while
Good luck Gill x
Hi Teresa,
Not the best of days today, I've finally broke down, far too much to think about, Howard is back on chemo, very confused, asking me what he should be doing all the time.
Our middle daughter came today to see her dad, and I just broke down, she listened to my problems and asked me to go and stay over with her for a couple of days, I have a younger daughter who is capable of looking after her dad so I will probably go for the break.
I'm not sleeping, I'm seeing daylight every night, I think it's time to go to the doctors and get it sorted.
Thankyou for your concern, I hope things are okay with you.
Take care, Gail xx
Hi Gill,
Yes it is hard to take, watching them change, I didn't understand it at first, I thought Howard was just having a go at me, which is not his usual personality.
I am learning slowly, but at the moment I'm finding it very difficult, I am going to have a couple of days break with my daughter, let's hope this recharges my batteries and enables me to keep strong.
Thankyou, good to hear from you.
Take care, Gail xx
Hi Gail
Just read your last post and had to let you know how much I'm feeling for you right now. I have had mm for nearly 6 years now and remember so clearly how frightened I was in the beginning. My lovely hubby was – and is – always there for me. We cried together a lot about this wretched disease that threatened to bring our lovely life to an end.
Apart from drugs, I'm sure that Howard is extremely frightened and bewildered by it all, as we all are, but, (I'm guessing), being a guy,and a 'protective husband' is not much use at telling you. He has to get his head around it and work it out for himself. That is easier to say than do, believe me, I still have 'dodgy, self doubting days, and I'm not on any nasty meds at the moment.
Be easy on yourself and have a good rest at your daughters', get to the Drs and explain things. Also, you might like to consider having a Macmillan nurse, your GP could arrange that. They really are a godsend, and will help you and Howard with any worry you might have. When I was taking the dreaded Dex, my Macmillan nurse suggested taking them with a spoonful of yoghurt. Simple thing like that but certainly was better than taking a glug of water every time! Sorry if you've already been told that.
With kindest regards – it will get easier, honest.
Rosie x
Hi Gail,
You may already be at your daughter's having a little rest I do hope so.
My daughter wasn't as easy going as I am and on several occassions had words with her dad when he was having his dex days. He didn't remember it and she was upset and so was I. We all decided to just go with what ever even if it meant going outside and screaming or digging the garden with gusto to work it off.
Now that we have settled down and accepted a lot of stuff and ignore a lot of stuff it is easier to deal with. Still not so nice but ignoring a lot can help.I even stopped going to public places with my husband just incase he started, this helped with my stress.
I am so glad Gill described the bad effects I always feel so guilty moaning but it's nice to hear others say it out loud and I know I am not the only one, so now I moan out loud as well and so must you as we have all been there. That doesn't make it any easier for you but it helps to type it out.
I am thinking about you in these early days as you all adjust to this terrible MM and hope you and your daughters manage to chat moan and laugh as often as you can.
Take care Love Teresa.
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