This topic contains 12 replies, has 7 voices, and was last updated by 
eve 11 years, 11 months ago.
Hi,
At the moment I am finding it really hard, Howards attitude is getting worse, he's asking why he has to eat, and what should he do all the time, I tell him he can do whatever he wants, but he just doesn't know what to do, if that makes sense.
I ask if he needs any help, most of the time I don't get an answer, it is getting mentally draining, I am unable to settle at night, he seems very restless, and keeps hanging his head down.
It seems to me he is going into some kind of depression, usually when he goes to bed at night he settles till morning, but now he keeps getting up and wandering around then getting back into bed.
Please can I have some advice, I've completely ran out of ideas.
Very confused, Gail
Dear Gail,
I'm not familiar with Howard's treatment history. Could his restlessness at night be due to steroids? Might his confusion be caused by pain-killers? Is it time for him to use a sleeping pill to get a good night's rest?
What do his doctors think?
Eva
Hi Eva,
Howard is on his third cycle, on the trial, I don't think it's the painkillers that are making him like this he has been on them since last October.
I'm not sure about sleeping tablets, he has only been like this for a couple of days, I'm sure it's got to do with his frustration of not being able to do what he used to. He was a very active man before all this, mountaineering, cycling, swimmimg, and a very hard working man until last December, then this raised it's ugly head.
I've not contacted the doctors yet, I just want to observe him for a few days, I'll try and find a time to talk to him and see if we can work through this.
Good to here from you, Gail
Gail,
You need to get Howard to talk… negative thought begets negative results… plain simple truth.
He has to find positivity and positive actions, especially so early in the illness…. there are treatments and therapies that can knock back MM for years and years… so why not him?
I have had a succession of relative quick failures with my treatments and yet I am still here and fighting four years later… there are quite a few here whose SCT's have taken well and may gain several, good, relatively healthy years before their next treatment. American studies have shown that soon MM will be in a position to downgrade the disease from 'Terminal' to 'Chronic' -when the median survival rate reches 10 years.. and they are hopeful this will be achieved in the next few years. There are also some excellent trials in progress for drugs such as 'Carfilzomib' which are exciting the drug company and the medics alike… with more to follow given the rate of progress shown in MM drug development in the last 5 or 6 years.
There is much to hope for… much to live for and much, much too soon for heads to drop.
Yes, Howard's old life has gone… but there is a new life to be fought for… a life that can be useful, loving and just plain different.
Get him to talk, to open up and tell him how much you need him to be positive and to fight for every second of the rest of his life.. be it 4 years or hopefully 14.
Regards:-)
Dai.
Hi Dai,
Thankyou for your support, I am having a very bad morning with him, he is pacing about, confused, can't keep still, banging his feet, I have got the doctor coming soon, I have been told this could be the dex, he came off it four days ago, but this is the first time this has happened.
I have taken on board what you have been saying, just at the moment isn't the time to be talking to him, he really is so confused and frustrated I would probably make him worse, but I will when we get through this bad patch.
You take care,
Gail
Dear Gail,
You poor thing, I know this must be very hard to see the man you love changing in such a way. I saw the same thing with my husband. He became very anxious and depressed when he was undergoing his CDT. Partly it was to do with the treatment and partly the shock of diagnosis and the complete change in his life. He was a very active man, cycling swimming sailing, and he could barely walk and did not work at all for a year. I believe Dai is right. It would be very good to talk. In our case Steve did not want to talk to me because he was afraid to upset me, silly man felt he was letting me down. His Oncologist arranged some counselling for him and he had a marvellous counsellor that he was able to say anything he wanted to. This helped him open up and he began to talk to me. As time went by I saw all the classic signs of bereavement, anger, depression and finally acceptance when he was able to start being more positive again. He did recover his normal good temper and positive outlook as soon as he finished the treatment and the drugs were out of his system. Steve is not the sort of man to be depressed or anxious so this behaviour was especially shocking. Do hold on, I am sure things will get better. After Steve's SCT we have a wonderful year of remission, shorter than we would have liked but nevertheless almost normal. He was able to work, his choice, and we travelled and spent time with our friends and family. I am sure that you and Howard can come through this difficult time and find a normal life again. Hold on tight.
Much love Mari xx
PS we all curse dexamethasone for all its nasty side effects, but I say Bless it, it works well in the battle to fight myeloma and really helps keep the disease at bay
Hi Mari,
Thankyou for your reply, we have just got back from the Haematologist at Blackpool, they took Howards bloods and pressure, bloods are doing nicely they are coming down, his pressure was a bit low but they weren't worried about that, after this a really nice doctor spoke to Howard he was unable to answer most of her questions, he has really blanked out today, she asked him if he had spoken to anybody since he was diagnosed in January, well I know he hasn't, he hasn't even spoke to me about it, she is now referring him to a psyhcologist, he is now back home in bed fast asleep.
What a day, I am glad he is now wanting to have help, he too is not the type for outside help, but I'm sure it will do him good.
I can't thankyou enough for your support.
Love Gail xx
Hi dai
My partner Colin was diagnosed in October 2011 and is on cycle 7 of cyclophosphamide dexamethasone and revlimid. His pps have come down from 17 to 1.2 so far and light chains down from 31000 to 1300!. Like everyone Colin gets some good and bad days with dexamethasone. Some random nightmares, some interrupted sleep and more emotional rather than shouting but all the same still finds it difficult.
As his partner I find it very hard some time as I feel helpless and what to make it go away but grateful he's responded so far!
I just wanted to say how inspiring I thought your post was, for me and Colin. It's right what you say, valuing each day and fighting to get this mm thing into submission. I admire your strength and courage. Your words will be a comfort to Gail,me and many others! 🙂
Keep well
Vicki and Colin x
Hi Gail,
I'm sorry if I came across as advising too simplistically. I understand that some people find it harder than others to acceptance of this damned disease… and that depression can take hold and dominate. It may be that the medics might have to look at the dosage of his Dex… but the stamping of the feet might indicate some problem with Peripheral Neuropathy (PN) and should be checked out.
My frontline treatment was CDT (Cyclophosphamide/Dexamethasone/Thalidomide) and the Thalidomide left me with quite a severe dose of PN. The best way of describing it for me is to imagine being a child and coming in from playing in the snow, pulling off your wellies and waiting for that chilblain/burning/pins and needles effect to wear off… only with PN, at its worst, it doesn't wear off. I have had it for 2.5 years now, made slightly worse while on Velcade (to the point where they had to lower the dose) but after a while it becomes a nuisance rather than an actual pain. But mine started with my banging and stamping my feet… so it is worth checking it out, especially if Howard has been given no warning or description of the condition.
The referral to a psychologist will do him good I am sure… because the sooner he starts seeing life ahead of him (and not the 'terminal' element of the disease) the sooner he will be able to raise his head and his sights on the possibility of many years of useful, enjoyable and loving experiences on the horizons of his choosing.
I wish you both all the best and a quick resolution to Howard's present difficulties.:-)
Dai.
Hi Gail
Just wondering what was happening with you and Howard?
Hope all is well and you are solving some of the problems?
Love Teresa
Hi, I think I'm replying to my own message, anyhow, things have really taken a bad turn, Howard won't be going to Macmillan on Wednesday for his chemo, he has lost another stone, he is so weak, all the doctors and nurses involved know of his condition, he will be going into a Hospice probably end of the week.
He really needs help he hasn't eaten a thing for the past four days, and his liquid intake has dropped drastically.
It is so worrying, he sleeps an awful lot, doesn't communicate very much, and has told nurses and doctors he's had enough.
He now says he's not going back on chemo.
Very worried.
Gail xx
Hi Gail
Sorry to hear henry is having a hard time,may be a little time in a hospice is what he needs.They will be able to get his symptoms under control and help with his anxiety this is what they do and a very fine job.
You said your self Henry,was behaving so out of character,I think we look on hospices as a place to die but they do so much more,it will give you a rest,and help Henry make an informed decision treatment or no treatment.Once his symptoms are under control he might think differently,and choose treatment.
you have also the chance to attend the hospice to learn a lot about there work do take this oppitunity as you will find it will help you.Eve
Hi Gail
Eve again just realised I am loosing the plot called Howard,Henry,My excuse is i was up with Slim during the night and I have not caught up from all the travelling to the hospital.Sorry Eve
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