CancerCompass message board discussion started by Suzuki on 1/19/2006 http://www.cancercompass.com/message-board/message/all,4134,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My father was diagnosed with mf about two years ago. Went first to natura therapies but these became more supportive measures. He had his spleen removed about three months ago as it was so large he couldn't breath at times due to he fluid in the pleural space from the spleen rubbging against his lungs. He is a lot better now that the spleen is gone but still gets bone pain which i think gets him down a lot. Although he has a lot of family support (family we haven't seen for years are coming from interstate to see him) It wearing mum down a lot as she works full time and then spends the rest of her tme off looking after dad, which she can handle but what makes it hard is that dad has completely disconnected himself from her. He seems to hav enough energy to talk to people that come to visit but the moment they go its like she doesnt even live there. Doesnt show any affection or talk to her. I know hes depressed and i feel like hes gviven up but at the same time is in denial and cant move on with life for as long as it might last. It upsets me that he and mum have worked so hard there whole lives and sacrificed so much for their four kids that now that the last one has left home they should be spending their money on things that they like and be travelling which is what they wanted to do as their still young. but now they have spent all their money on medical bills as they have no health insurance and can no longer get any. I wish that dad would realise that im sure he still has years under his belt and yet he chooses to o nothing with them. What can he/i do to make him realise that his family although we have to continue with our lives still want him in our lives as he still plays an important role? Suzuki Thu, 19 Jan 2006 00:00:00 GMT The one thing that people who do not have Myelofibrosis do not understand is, in our minds time has now become finite.There is an end comming and we know it. I am not saying your father is right but think, every day on his mind is this fact. I too have bone pain. This too is a reminder of what awaits me. It is so hard to forget. Try to encourage him and maybe he needs some professional help. God bless and I hope things improve for you and your Mother and Father Beloved49 Thu, 19 Jan 2006 00:00:00 GMT  What I wouldn't give to take this disease away! Beloved49 is right, maybe he should seek a counselors aid. :) It can't hurt! You seem concerned and I just thought sharing a little of what I know as a partial caregiver to my Mom might help you. My Mother has been coping with myelofibrosis for almost 3 years. Transfusions and constant Dr. visits cramp her style. She is on some heavy painkillers for her legs...but she found a bright side to the narcotics: they help her sleep through the night! Even through nightsweats! She always seems to find something positive. But that's just the kind of person she is. Your father is sorting things out for himself I am sure.  I have heard of patients "turning off" toward the ones they are the closest to. I know my Mom has to absorb all the information and treatments in her own time and I have seen her blow off close family members that pick at her for too much information and constantly question her.  That is simply the best way she can cope. So we certainly give her space and don't push her if we don't want our calls to get screened! LOL She has to see her specialist and have lab work done every two weeks now. On top of checking into the hospital for  transfusions at least once a month. So she might get one full week out of each month that she has no appointments!!  Not to mention daily leg pain that is excruciating at times. So she is sick of thinking about it 24/7.   She enjoys her good days and I mean she is up and gone until she can't go any more.  But unfortunately there are other days that  I talk to her and she is stranded at home and called off work because she has to sit perfectly still through a 3 hour nosebleed. The day after Christmas, she had a nosebleed for 8 hours straight, followed by a two day gig in the hospital. :(  On those days she is down and taking care of herself. But she does spend time with her hubby and talk to us on the phone, even for a few minutes... even when her legs are killing her.  That's the sad reminder that my Mom's time is precious and finite and nothing should ever be taken for granted. Anyway, I hope your Dad warms up to those nearest to him soon. You must have patience and understanding with him though.  Whenever I am not sure about the way things are going for my Mother, or what to do I just ask myself "What would she be doing for me, if this situation were reversed?"  Take care now and let me know about your Dad! I know you struggle with this on a daily basis in your own way.  FYI, if you want to be involved more, just organize a blood drive and have everyone typed to see if there is a match for your dad. I did this and my Mom was touched by the number of volunteers she got! You could also join the national bone marrow donor program. JuJusdaughter Mon, 03 Mar 2008 00:00:00 GMT