Has your diagnosis impacted your relationship ... - CLL Support
Has your diagnosis impacted your relationship with your partner in any of the following ways? Please tick all that apply, adding comments*
AussieNeilAdministrator149 VotersPlease select all that apply:
My partner won't discuss my CLL at all, he's only interested when i have hospital appointments - and only then because i ask him to come with me. I tell myself that it's because he can't deal with the thought of me needing treatment/potentially losing me. When i was first diagnosed i told my family it wasn't something that i wanted discussed regularly - unless I wanted to - but now if i do mention it, or wonder if some other problem (fatigue for example) is associated with it, I am often accused of going on about it, and that i'm not really ill..... it can be a very lonely thing to have and to deal with.
Fixton, it is a lonely and isolating disease to have to deal with. I suspect my husband simply doesn't want to think about it. I was diagnosed shortly after major spinal surgery and I cannot fault the support he has given me for that especially the lead up and recovery periods. But the CLL, he doesn't want to know about it and doesn't want me to think about it or even mention it. I don't think he is being callous or uncaring, I think he just wants our old life back, pre the need for surgery and pre the CLL diagnosis. Just like I do! Leading up to the blood tests and visit to the haematologist I become psycho chick, and after the appointment I have a couple of days where I want to replay what the specialist said and study the numbers , in short you could say I'm a full on pain in the butt! And that my friend, is the emotional strain that goes hand in hand with the " Uncertainty" ... Loved that article ...
You sound totally like me Rex. Back surgery, masctectomy, now CLL. I become obsessed with levels and constantly worry. My hubby tries to understand but pulls away and wants to just deal with it. He does struggle I think because he already lost his dad to cancer. He worries about me and I love him for that as well.
If you wish your reply to be private to the CLL Support Community, please reply to the post below:
healthunlocked.com/cllsuppo...?
You can edit or delete your comments here by clicking on the 'v' to the right of Reply ...Recommend below your reply. If you have difficulty editing/deleting your reply, just ask me to do that for you via a reply here or to your comment or via a Personal Message (PM)
support.healthunlocked.com/...
Any responses to this poll can be found via a Search Engine, (Google, Bing, Yahoo, etc), but provided your username is fairly obscure and you don't put personally identifiable information into your reply, your anonymity should be safe. HU does enable you to change your username a very limited number of times if you decide to have a username that is not easily identifiable with you:
support.healthunlocked.com/...
More on security:
healthunlocked.com/cllsuppo...
Neil
Flixton, this is exactly the way my husband behaves. I agree about the feelings of loneliness too. I think this may be my first post on here as I tend to read rather than reply. Only glad that this group is here
In the early days (10 years ago) there was a lot of anxiety and talking. There is a lot of talking and discussion at crisis points - possible stem cell transplant, chemo. When things are stable, we are stable. When things are not stable, we both become anxious, irritable, and need to work out the bugs.
In a significant way, my diagnosis and treatment has improved our spousal relationship. I'm appreciative of his support, the way he has taken on all the extra chores, and his strong belief in me. He admires my attitude toward "facing the bear", and helps to keep me grounded.
I feel bad about not doing more around the house and the yard. I feel bad about demanding more cleanliness - imposing my affliction on others. I feel like a whiner. I feel bad for the CLLers with worse mutations than I have. But the germophobes at work like me when I sanitize the doorknobs, printer, microwave, and coffeepot handle 
On the positive side, I decided my life has been a great adventure, and my one regret is not finishing college. I dropped out of university 8 years ago due to fatigue and depression after hurricane Katrina and before diagnosis.
I took an inventory of my life's accomplishments, my family, and friends, and felt that life has been full, and is certainly not over. I think I had a positive effect on many people, and have done a few good deeds, and developed a few talents that I passed on to my kids and share with my wife.
I started doing MOOCs on coursera.org and edX.org, and realized I did indeed have motivation and enough energy for at least 1 real college course a semester. These days, many colleges have a mix of online and traditional. So I'm back in the game there. MOOCs don't cost anything (yet), and there's such a wide range of subjects, and you can quit with no stigma if one is poorly organized.
Reading the advice and experiences here has been a highly significant boost to my confidence that I can weather the treatment when the time comes, and that for a significant number of us, treatment improves quality of life for enough time to make it worth doing.
My partner is exceptionally supportive, I'm very lucky, but as I also had endometrial cancer the CLL seems like a side issue. If I have a tired day he's happy to let me rest, in fact, insists on it. Even though my CLL have not progressed very much, I find the longer I have had it the more 'tired' days I get. It did knock my confidence when I had a chest infection for 4 months last year. However, I'm standing as a District Councillor in the local elections and although he hates politics he said he is happy to see me getting back into life. The party I am standing for know about the CLL and said they are happy to give me a helping hand when I need it. I count myself one of the lucky ones.
My wife moved into the spare room during my chemo and has stayed away. It has affected our relationship and obviously, my confidence. I know everyone handles cancer differently but I must say, I've been hurt. Its like I'm somehow unclean or infected. I'm closer to my Haematology nurses, Marie Curie staff and Macmillan Nurse. They provide emotional support.
My husband and I were struggling before and it's only gotten lonelier. Several times I've heard that I don't have the energy I once did before the diagnosis. The tiredness is so totally different, at least it seems so to me. When I get tired, it is like hitting a wall. I still like physical work, like mowing, gardening, cutting wood but when I get tired, I can barely lift my legs. A nap does wonders. But, often I get told that I seem tired.
I enjoyed intimacy, loved the beauty of it, the thrill of it...now, it seems a past part of my life. Very sad.
i hope at some point you can recapture that.... sending good vibes your way....
My husband is very supportive, attending apointments with me; being there at times of admissions to hospital, however, there is frustration that our plans in retirement are continually being put on hold due to treatments these last five years. I often feel the pressure of 'when can we get on with our life" as my poor response to treatments has resulted in limited good time to pursue our plans. Obviously we are getting older all the time and whilst we are both relatively fit for our ages (apart from my CLL) I know he feels time may run out on being able to travel etc as we seem to spend so much time on my treatments and monitoring. I do feel pressure from that frustration even though I know he is always there for me.
I met my partner while waiting for the results of the blood tests that confirmed my dx of CLL. While he has been very supportive emotionally and mentally, it is me who has held back physically.
I think it is my inner self not allowing him too close in case this monster of an illness leads to my demise sooner rather than later. Its a protection barrier, a way of giving him a way out, which I have asked him several times if he wants to take.
I am not sure if it is the effects of CLL or the fact I was on my own for many years that is the cause or a combination of both.
We don't live together and it is very rare that he stays at my house, another part of the protection barrier.
I don't want to be a burden to anyone, the less number of people the better, so I keep them at a distance, some because they don't/won't understand CLL and some because I care about them too much to hurt them.
This illness has a lot to answer for and I don't think we are given enough advice, information, support and help from the so called "medical profession", especially when on "WWW" (watch, wait and worry). They tell us to "go live your life", well it's not that easy to do when you have cancer roaming around your body causing suppressed immune systems, fatigue as well as all the mental issues of worry, anxiety, stress and depression.
Could they do it? probably not.
Those close to us, family, children and spouses/partners, need and rightly deserve help, advice and support re CLL so they don't shut us out, treat us like lepers and break our already laden hearts with their actions.
I have spondylitis in the base of my spine which at the moment is causing a lot of pain, discomfort and mobility issues, but I would gladly put up with this pain forever in exchange for losing CLL.
Hopefully, one day, we will get the FULL support we so deserve and need to enable us and our partners/spouses to cope with CLL so we can " go live our lives to the full in every aspect".
Anne xx
Hi I hate the way that Cll has effected my and my husband's life. The old life seems like a different person. I simply don't have the energy that I once had and don't feel that I want to have the same intimacy that we both enjoyed. Whether this is to put up a protective barrier or just down to physical tiredness I don't know. I do almost mourn the old days as I know that in the real world they are gone. Thanks for this poll and I hope others contribute and find it helpful
Like the post above i hate the way it has affected my wifes life. You only get 1 shot at life and our partners somehow board a train that they dont need to in order to hold our hand along our journey. Any cancer is life changing as you dont really think about the nitty gritty of death after your teens. Its something you have forgot about and as your children grow you learn to answer their fears by somehow removing yourself from the reality of mortality. Then Bang its infront of your face, I know i have changed a lot in many ways, Its hard for your partner to discuss things with you. I know many people moan about their partner not wanting to discuss it but in my case i can see why. Cll takes up too much of your life and your thinking time, you probably forget about it after a time of not going to the hospital or having a perfectly normal week. You find you have pushed it out your mind when all of a sudden your partner or friend asks how its going........ Then be honest its right back there at the front and all the things you didnt bother moaning about are your new hot topic. After chemo your partner also gets to return to something of a normal life so they block it off and shut it out, we cant expect them to live on W+W forever.
In my case i have had the most outstanding care from my wife and i can understand that she wants us to go back to a time when it was never in our lives. I think our partners become more like support workers and friends while were being treated so it takes a little time to rediscover the fact that you were once unable to keep your hands off each other.
Many small steps are equal to one big step.
Hi , I am so moved by what you have written. My husband was diagnosed 5 months ago.
In reply to what you say about boarding the train...make no mistake, when someone truly loves you they want to board the train and yes it's not the journey anyone wants to go on but Im sure like me your wife wants to be there. Don't see her as a carer but as the woman you fell in love with, that's how I want my husband to see me. Don't feel bad, life can suck but it sounds like you have a fantastic wife..dont look back, look forward !...Take care of each other
Maria xx
Unable to talk through implications due to denial of partner about the reality of the condition; avoidance of the topic is the result.
New at all of this, it's only been a few months, but my husband has always been the life of the party he has a special glow about him, no matter how bad my news is or how bad I feel he makes me laugh and feel better. He is one hell of a man and I am so blessed I have him by my side. 😍
