my husband has cmml

My husband has cmml - a rare form of leukemia.  He is almost totally asymptomatic which is wonderful but he is understandably depressed about the diagnosis a bad prognosis on treatment options.  He is refusing to tell family members and almost didn't tell me.  He actually waited a month before he did.  Occasionally he is loving and kind and wanting to be there for me and the children but then I think it is all too much and he wants to lose himself in his work.  He doesn't know who to turn to for treatment and I don't get a very positive/active response when I make suggestions.  I am not trying to tell him what to do and only respond when he brings it up as he keeps saying he doesn't want to talk about it.  He doesn't want anyone to know.  We have told one or two friends and that is all.  I really want to tell our grown children and other family members but he is definitely not ready yet and I worry that he won't be until it is too late.  He is very worried about how he will die, what we will all experience.  I just listen.  But now he is saying he wants to pull away from us, to go away.  I have no idea how to help him.   I want to give him hope, to encourage him but he has already told me that it is not helpful to do that.  It is just annoying and reminds him of how little time he has.  What do I do?  What do I say to him?  I feel so alone andd he is so angry.  We are both doing our best but it is so hard.  This feeling of separation makes it all feel insurmountable.  I keep thinking if we could stick together we could survive this, but that is not even the truth.  If it's going to be horrible, I want us to feel together in it, not two independent ships suffering through the same storm.  I wish for two things:  1.  He would tell close family members.  2.  He wouldn't shut me out.  And if I get a third wish I would wish he would seek treatment and go into remission.  When he shows he loves me I feel like we have years, when he says he only feels alive with his friends or at work (because he can forget) it kills me.  Any advice on how to talk to him or deal with this would be welcome.

  • Hi there,

    Welcome to this forum although I am sorry to read your story.  Your husbands reaction seems quite familiar. There is another lady on here ( Jules 54 ) who's husband is the cancer sufferer and he also does not want to talk about and shuts her out. We men can be very funny creatures at time, for we think by not talking about it, we are protecting those we love. But we don't realize the hurt we are causing by doing this as our partners feel excluded and so alone. It is so hard to help someone when they don't want to be helped so I do feel for you. I am sorry, I cant advise you but just wanted to welcome you to this forum for although none of us on here have met we are in a way united by cancer and the pain it causes so many families.

    What a lot of people don't realize that cancer doesn't just affect the patient, it all affects their family and friends and it is often harder for their loved ones for you feel so helpless and alone which is why this forum is so good.

    Wishing you all the best and please come back and let us know how you are getting on.

    Take care, Brian.

  • Hi

    So sorry you have cause to find us here and even more sorry to hear about your husband's attitude.  I have to say that it seems a lot of men react by not talking about the cancer either trying to protect loved ones or to a certain extent  perhaps they think by not talking about it it is not happening.  What they do not consider as Brian says is the effect this withdrawal has on loved ones.

    Can I suggest that you accompany your husband on any future appointments he might have at least then you can find out from "the horses mouth" what any treatment options are.  Your husband might not want you to accompany him but point out it is not his decision but up to you if you wish to go along.  It might give him something to think about.

    I am lucky in that in our family I am the one with the cancer diagnosis and have discussed this with husband, daughter and family and friends and work colleagues.  not sure if it would be the same if it was hubby but having said that I think now he probably would having gone through it once.  Our daughter is 18 and at Uni.  We told her straightaway what the diagnosis and treatment plan was as well as prognosis.  Because she had all the info she has been fine with it and has called regularly to check on me although not so much since the Easter break as she knows the cancer has gone.

    You might try and tell hubby that he is only making it more difficult for you and the family by not speaking about this and that it will make his death all the more shocking for those who do not know and I am sure some of them will have a feeling of deliberatly being left out (especially your children) and will resent this.

    I only wish I could really offer some useful info or advice but at least you know you have the support of us on the site and can post as often as you need to.

    Best wishes.

    Gill

  • Hi,

    I only joined this forum a few months ago but already feel much stronger because of it.

    My husband has cancer and has not been dealing with it very well.

    I know how you feel to some extent.

    Because of this site I have found the strength to almost confront him with my concerns, for example, if he tells no one (his mum and sister especially) they will feel the time they have with him will be all the more prescious but wasted, they will not thank him in  the long run for shutting them out. Every one knows about my husbands condition but not everyone knows that it is terminal, the doctors say possibly 5 years, we are now 18 months in to that.

    I've also managed to get him to seriously consider some form of councilling which up untill a couple of months ago was a no go subject.

    This site is wonderful for support, as I said before, it has helped me alot.

    Sending hugs

    xx

  • Thanks to everyone for your support and replies.  It is greatly needed and appreciated.  Last night was horrible.  I had been acting crazy (granted) trying to communicate how I feel shut out and left alone and last night he verbally laid into me.  He is jealous of what he imagines my life will be like without him, he says I have been mad at him since he told me and he wishes he hadn't.  I think he only did because I was questioning why he had gone out with a lady from work and he thought it would get him out of trouble.  Anyhow he said some pretty mean things, like he was getting everything ready for me and the family so I wouldn't worry about anything but now it is only for the family as he doesn't care about me since he is just in trouble with me for, as he says, doing it wrong.  What I have realized is that this miscommunication was probably there before the diagnosis and I just couldn't see it until I learnt that he would die.   Then when I asked for more, tried to reach out to him and was rebuffed and then responded angrily, it all went south.  I wanted to fix things, to have him back, and that was completely the wrong response.  He just feels "sick and in trouble" as he puts it, walking on egg shells around me.  I don't want that.  I want to support and love him through this but I had felt like I was doing it all by myself before and now, well I have never felt so alone.  And because he won't tell anyone I have no one to speak of my despair to.  I have asked to go on doctor's visits and we will see if he lets me.  He has had moments when he has said he needs to see a cousellor and that he needs to tell people, so maybe if I just shut up and leave him alone he will come around.  But I am so scared he will turn to someone else.  Sorry for all this personal stuff, it's not really about the cancer, but like I said I have no where else to say this.  I have no clue how to deal with this.  My instinct is love and togetherness and it is too painful to do that if you are just being shut down all the time.

    His depression is also taking its toll on the kids.  My son is in trouble at school.  On friday we had an important meeting with his teacher.  My husband had a "more important" meeting at work that included happy hour until 8pm.  Even then he only came home because I called him.  I was there alone.  It was awful and I spent the weekend trying to clean house and help my son with his work at the same time.  My husband's "helping" was yelling at him, sometimes justifiably, but always with very mean words and favoring the other son.  This is all so screwed up I don't even know where to start.

    So thank  you for the support.  I greatly appreciate it.

  • Wow SBM ....  you really are going through it aren't you!  I was so sad to read your post and see how you are suffering such turmoil. Its not often said on the forum but I really do feel that it is underestimated what a strain this disease can put on a relationship. Some partnerships are made much stronger following a cancer diagnosis but likewise, the stresses and strains of it all can put a massive wedge between others. Is there any way your husband would go to a family counsellor with you? If he wouldnt, I think it may help you to see someone alone and talk about the huge difficulties you are having and that are now affecting your children so badly. If your hospital has a Big C centre there are normally counsellors available there or the McMillan service is really helpful.  It is an awful burden for you to carry alone and maybe you could confide in a trustworthy friend.

    Wish I could be of more help but please keep posting and let off steam here whenever you need!  Max x

  • Thanks for the encouragement.  it got better on Monday night.  He was upbeat and positive about things at work.  we put the kids to bed and watched a movie together.  Then there was an email from my son's teacher so the next morning there was more irrational yelling and saying things to a child no one should say.  I think I have found support at the school for my son but I am excluding my husband from all emails and only telling him what is going on.  I still think he is talking to his "friend" at work more than me.  especially now when things are tense at home because of my son's actions.  Last night things also got a bit better.  Although he ignored our son we sang together and he gave me a quick hug this morning.  it's like a rollercoaster.  I found counselling for both of us, separate caregiver and cancer victim meetings but at the same time and same organization.  he encouraged me to go but wouldn't go himself.  Since he wouldn't help our son with his work I had to stay home to do that anyway.  I guess eventually something's gotta give.  just don't know what that will be..  I feel totally numb now and zero energy.

    i appreciate you all being there.  it's nice to have a place to be honest, to document and reflect.  It puts it outside you somehow and makes it about the situation rather than anyone in particular  - me, him, the kids. still screwed up though

  • Hi sbm ....

    It must be extremely hard to deal with these mood swings - one minute feeling loved and appreciated and the next dealing with hurtful outbursts. I wonder if all this is truly down to his diagnosis or may also be linked to the kind 'friend' he has at work.  I have been there, got the T-shirt, and am familiar with the mood-swings that accompany workmate 'friendships'.  Has your hubbie changed only since his diagnosis or were things difficult before that time.

    I sympathise deeply with anyone who has been told they have this disease - I have a terminal prognosis and know how hard it is to cope with the highs and lows of it all.  I am lucky that my husband and I can talk about all aspects of the illness but as I have said before, I do not underestimate the strain it can put on you both as a couple. It is very wrong of your husband to take his feelings out on you and your poor children, who must wonder what an earth has happened to their Dad.

    I am so sorry that you are trying to cope with all of this and wish you strength - I think going to talk to the counsellor may help you get through, its worth a try!  Take care x

  • Thank you for the support, you are lucky to have such an honest relationship with your husband.  I thought we had that but now I do wonder.  His behavior didn't seem odd before the diagnosis but then I found out about the depth of the friendship along with the diagnosis so it is hard to tease things out now.  Things settled down as the week progressed.  We seem to be finding a new normal.  Don't talk about anything with some emotionally honest moments.  Whatever was going on at work seems to have shifted as well.  He is quick to reassure me that I don't have to worry about anyone else and I chose to believe him although I still feel sad and heartbroken.  The cancer thing needs more focus than making up stories in my head about what could be happening.  As long as he is making an effort, even intermittently, I can move forward.  I live in hope, however difficult that is. Big hopes are: I hope he does love me.  I hope he speaks honestly with me.  I hope he seeks treatment.  And I hope he is cured.  There are selfish reasons for documenting this journey here - wanting support, wanting to write it down so that it starts to make sense.  But I also want to reach out to others who have this experience.  There seems little conversation about these kinds of mood and relationship difficulties out there.  The way he has set this up is that we don't talk about it unless he wants to, when he wants to and the topic he wants to. If I bring anything up, disease, doc visits, behavior he gets defensive and shuts down the conversation.  My only idea for making it a safe place where he can open up is to follow his lead, listen and choose my comments carefully.  Whether its the work friendship or the cancer it feels like he has already left us.  I keep thinking about writing a book called "The Disposessed" since my children have already lost their father as he has become even more remote and I have lost a husband for the same reason.  We are finding things to communicate about but it is not our fears and feelings.  I realize that we can't spend all our time dwelling but discussing academic points related to work all the time seems so superficial.  It's only if we are both awake at night that he opens up for a fraction and says things like, "will you hold my hand at the end".  Of course I say I will be there but it just breaks my heart that he feels he even has to ask.

  • Hi

    Sorry to hear that although tings have improved a bit hubby is still not talking much and only on his terms.  It must be so difficut for your children and no wonder your son has ad a few problems at school.  have to say most schools seem to have a pretty good handle on helping children with problems if only they know about them.  Have you explained the situation to the school and told them that your son does not know?

    As regards the workplace friendship I should try and put this to the back of your mind as being unimportant in the whole scheme of things.

    Perahps try leaving this page up on the computer so he can read how your feel.  It might spark another bout of fury but it might also make him think.  Whilst I know he is the one with the disease he is being very selfish in not talking to you or telling the family about the prognosis.  the family will not thank him for this once he is gone.

    I only wish I could offer more advice and support to you but at least you know you can say anything on this site and no-one minds or judges.

    Gill

  • Thank you, things are slowly improving.  Hopefully the week in front of us will go even more smoothly.  we went out to dinner last night and had a great heart to heart with a lot of difficult things said with relatively little fuss.  I could only tell a few key people at my sons school because of the "not telling people" thing.  But I think we have resolved the friendship issue and are more honest about what we need from each other and how we can support each other.  I am hoping we are are approaching an understanding of "the new normal" and that will let him approach treatment options (although the stats are terrible) and the possibility of tell our children.  I cannot express how I have appreciated the support from people on this site.  It has truly allowed me to reflect and feel that I am not insane and selfish.  I will continue posting from time to time in the hope that it helps others who have to ride this rollercoaster.  Sincerely, Thank you