[paulineParticipant]

Hi

Having looked at this site since my hubby was diagnosed with multiple myeloma in 2009, I have struggled through and thought I was doing a pretty good job as carer and keeping everyones spirits up… keep the tears til I was alone. Hubby had a successful stem cell transplant in Dec 2009 and touch wood we have been going along quite nicely since then, a few bumps but we got over them. Therefore I was quite suprised when he completely flipped the other evening. It came completely out of the blue! He hides his emotions quite well so I was stunned when he flew out of the house (not literally – he doesn't have wings!) and took to hiding. It took me and a friend to find him and then he wanted nothing to do with me and I was banished from the house until he had calmed down. He couldnt even speak to me although was able to speak to our friend about how he worries about the illness coming back and is scared about what that entails.

I feel really hurt that he is pushing me away. I have a differnt approach to his illness than he does. He reckons I am an osterich but my way of coping is by being positive and not worrying (well not too often anyway!) until we have something to worry about. Why worry when we can be enjoying the time we have left? He on the other hand worries daily about this wretched disease and what may happen when it comes back. Am I being heartless by not doing the same? I dont see him as being ill, I see him as having had an illness which is monitored for relapse but if it hasn't come back yet then hey lets enjoy every day. I feel as if I have let him down by not seeing that he is frightened of the disease coming back and that I should have realised how he was feeling and should have been more understanding. I am not sure how to deal with these latest feelings – they are so raw. Should I see him as being ill? Should I be constantly thinking about the disease coming back? I just dont know how to support him. Am I alone or are there other carers out there who feel the same or have some advice on how to deal with this situation?

Sorry to have gone on a bit; normally I am bright and breezy but the wind has rather been knocked out of my sails!

What can I do to help him? Any suggestions… please?

[eveParticipant]

Hi Pauline
In life we seem to find this energy to cope with what ever comes our way,my husband has the same view as you,why worry about it,if you cannot do anything about it!!:-S I how ever try to jump there hurdle first,so i can make it easier for everyone else to get over.
He is the Myeloma sufferer I am the carer,but this diseases has taken my life away too!!!so we both suffer in different ways and handle the situation ,we both,do not express how we feelings.
I think you husband,need help,I think he has kept all his feelings in to spare you,and now he is in remission,he does not understand why he should feel like this,especially when you are so positive.
Depression is an awful thing,and men do not admit to it,do not feel he has rejected you,get him help and give him a big hug,
Hope this helps.Eve

[jmsmythParticipant]

Dear Pauline

I am sorry that you are having such a bad time. Reading your post brought back some bad memories. This is such an individual and shi**y disease that people handle differently. When my husband was diagnosed in 2006 he got the family together and told us all that he wanted no research done on the illness and he did not want to talk about it. According to Frank any information that he needed he would get it from his consultant. I was different, I wanted to know all that I could. I found this site and get all support and advice I need. I think about maybe 18 months after diagnoses, we went through such a bad patch, it lasted about 9 months and was the worse time of my life. I could do nothing right, everything I said was wrong, Frank would not discuss anything with me, he pushed me away at every opportunity. I used to leave the house in the morning and not come back to the evening. It was so obvious that he did not want be around. I posted on the site and got so much support and advice. Someone recommended a counsellor. There was no way that Frank was going to see a counsellor so I did. For me, it was the best thing and I wish I had dne it sooner. Someone to listen to me and not shout me down or walk away. You are not being heartless Pauline, you cannot change how you feel and neither can your husband.

I still don?t agree with how Frank handles it, (and there are times I want to scream at him) but I have come to accept that this is his illness and he has to cope the way that makes him feel better. I worry myself sick weeks before seeing consultant but Frank just goes with the flow. Frank is like you ? why worry, when there is nothing to worry about. I am sorry for going on Pauline, but I am not as good with words and explaining myself as my cyber friends. I am sure you will get good advice and support here. We take evey day as it comes and he even talks about how he feels!!! Take care.
Love Jean x

[paulineParticipant]

Thank you both for your replies. I feel very alone this week so it nice to know that actually I am not.

You both make very valid points and I have tried as tactfully as I can to suggest that my hubby phones the helpline number to discuss his feelings with someone who is outside of the situation and can offer the best advice. I am hoping he will take this on board but judging by his reaction I very much doubt it.

I cant seem to say or do anything right at the moment but looking at Jean's reply there is hope!

Eve I think you are right about the depression but he says he doesn't want to take antidepressants. I think he needs to talk to someone so perhaps I will be able to persuade him to do so…. one step at a time eh!

Thanks again

Pauline

[jmsmythParticipant]

Hi Pauline

I tried for years to get Frank to talk to someone but he wouldn't. I know it helped me so I hope you have better luck. Some of my friends on the forum said if he (Frank ) wanted they would talk to him. He nearly had a stroke and said there was nothing to talk about!!! It is hard but I have to respect his decisions. Pauline things got better for me and we are enjoying the good times – long may they continue. So I am sure they will for you. My sister reminds me "when Frank realised his illness was not your fault he got better" – maybe there is something in it – don't know. Chin up you will be supported here and you won't be alone.
Take care love Jean xx

[paulineParticipant]

Thanks again Jean. It is nice to know there are people out there who understand.

Pauline

[eveParticipant]

Hi Pauline and Jean,
Jean and I have had this conversation before,you will find Pauline there are a few others on this site with partners they feel like strangling some times,even with out the illness,that,s part of them,
I think jean and I came to terms with ,what was going on instead of getting angry we took the view( their body there life )it stopped my blood pressure going haywire.
I think he would miss you terrible if you were not there for him,so in some ways you do have the upper hand,it does not mean going on pills,he just might have to speak about all his fears,we all have them,my demons wake up at 4 am.but I do not tell my partner my fears.:-)
He knows deep down,he is being irrational,but cannot help feeling like that,do you have a support group in your area,may be he could find someone,in remission who is ahead of him,worth a try. Eve

[brochoParticipant]

Hi Pauline this lousy illness plays havoc with all our lives! You must be very hurt by your husbands reactions but I think Jean and Eve have raised good points and as Jean said it has got better Perhaps you could contact his specialist nurse , in confidence , explain the situation to her (or him) and she may find a way to approach him about his feelings Its so very true that we always hurt the one we love and possibly you are just too close for him to be able to open up to you at the moment . I hope things get better for you both Bridget

[jmsmythParticipant]

Yea Eve mydemons wake me up in the early hours – they are quite busy at that time. Hope Slim isfeeling better.

Bridget how are you? Hope good.
Love Jean xx

[eveParticipant]

Hi Jean
He is not to bad in himself considering the ctd has not done the job for him,and now started Velcade,another learning curve, 2weeks on 1 week off just started the week off.
he is not looking forward to having bone marrow taken at end of every cycle, but that is now the only way they can tell what is going on.One minute we are looking at going into remission,but not recommending sct,we thought that was disappointing,only to be told Myeloma in bones has increased,it is funny when they tell you,you just not prepared for it. takes awhile for it to sink in.
Any way enough of my problems,good job i love G&T it works wonders LOL
Best Wishers Eve

[MinParticipant]

Why is it that 4am is an hour that keeps you awake. i can usualy get to sleep no problem at al but waking at 4am means I am just washed out for the rest of the day whilst my imagination goes into overdrive.
I think we need a 4am posting board so we can swop our demons and put them to bed.
Does everyone have middle of the night insomnia?
Min

[DaiCroParticipant]

Yes here… seemingly every night.

Dai.:-P

[paulineParticipant]

Thanks all for your advice which is most welcome. Insomnia also plays a big part which is probably why it is sometimes difficult to keep things in perspective! I will take all your advice on board. Hubby is now saying everything is fine and we should now forget what happened on Monday…. mm typical eh! This really is a roller coaster illness but thankfully the blood pressure is still in check and the wine certainly helps!

Thanks again for all your kind wishes and the advice given. I know everything will be ok so it is just a matter of keeping strong… and that I can do.

Pauline

[DaiCroParticipant]

Hi Pauline,

I appreciate how difficult Monday must have been for you, especially as it came from left field without reason or warning. I don't know your husband so I cannot pass judgement or offer a rationale for his behaviour… but I do know where he is coming from? and I believe I know where he is going.

You want to live each day to the full… to enjoy each others company while you can, he on the other hand seems to be more comfortable with looking at the future with a bleak, almost blinkered view.

My perspective (not necessarily your husbands) is this.

We (MM sufferers) have been told that we have an incurable disease… incurable but treatable. The prognosis is to use a series of treatments, including transplant(s), to knock MM back and give us some breathing spaces and time with a reasonable quality of life. When we relapse we move on to the next treatment and knock it back again. I would love to say at this point that we repeat ad infinitum… but I can't because we can only knock it back so many times because of the limited treatments.

Your husband knows this… of that I am certain. He knows this and although he is in remission, from the main event of the SCT, he knows that when he relapses he will be one step nearer the end of available treatments? and there lies his problem. He cannot see his current remission as a cause for celebration of life because he is looking beyond it… all of the time. He is waiting for the relapse and expects it every day. Anyone who tells him to enjoy life while he can is to him, cruel, callous and uncaring. Why? Because of the negative implications in what is intended as a positive statement.

'Enjoy life while he can'… to him this is a continual affirmation that the time he has is limited and it frightens him to the point where he cannot enjoy life at all. He feels safer expecting the worst because he knows that it is an inevitable truth and everything else is false or forced and he cannot live that way.

Eve said something earlier in the thread that is an absolute truth. When someone is diagnosed with MM their life, as they know it ends… as it does for their wife/husband or partner.

Your whole life has been turned upside down; whatever you had before the diagnosis has been replaced by all things MM. Your daily routines, your social life, etcetera, have been taken away from you by several words issued from a Doctor's mouth.

Your husband's pain is both physical and mental… your pain is both mental and emotional. It is understandable therefore that you want to make the most of all and any time that you still have together… and while it cannot be Christmas every day there is still the opportunity to try and find fulfilment and enjoyment in the simpler side of life… in loving companionship, family and appreciating every positive action and event that crosses your paths.

Your husband needs to accept that this is what you mean and want? for both of you. Perhaps he will… but at the moment I believe he hears 'while he can', he ?sees? his relapse and he tastes fear. Before you ?forget? Monday night I think you need to convince him that your positivity is not denial? only your perspective and your way of coping? and hope that he opens up instead of closing down.

I truly hope that he opens up.

Dai.

[paulineParticipant]

Thanks Dai. That makes complete sense. I did let him know that it is the only way I can deal with it and think he understood. Reading Eve's last post makes me realise how lucky we are… I do hope the treatment works Eve and I am sure everyone on here is rooting for your hubby.

Everybody has been so kind. You are truly wonderful people and I thank you from the bottom of my heart.

Pauline

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