You're probably also grieving the loss of the relationship you once had as well as dealing with the anticipatory grief. While having your loved one physically still with you is far better than the alternative but the dynamics of the relationship you once had and shared changes so much because of the cancer and I found that really, really difficult to come to terms with. It is good to have a place like this to talk with others going through similar situations.
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Hi Caryn, my partner (41) has been battling multiple myeloma since 2013. He went into remission for a couple of months but the last 2 years has been a constant battle to get a chemo treatment that will keep it at bay. He is about to start on the last chemo treatment they have available at the moment having exhausted the other options for now. We've experienced all the ups and downs of the various treatments. Like you say some days you wouldn't know he was sick and other days he's barely out of bed. You never know which person you'll have with you on that day. As the person caring it is tough not being able to make any firm plans based on the day. If a treatment is working and having effect though this does improve so these are the times to make the most of if possible. I'm also in Adelaide so if you ever need to or want to talk please let me know.
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You are most definitely not alone. We don't have kids but my partner's personality has changed significantly since his cancer returned. It's partly to do with the medication, and partly do with what I think is depression. We've had some roaring arguments during this time but I've come to the conclusion that it's not the real "him" I'm dealing with now and I just hope that once we get through this the guy I know is there will return to some degree. Is your husband working? I find that it's hard for him to get outside of himself when he spends all day at home, often not doing anything. As for you and the kids all I can say is that the best thing that helped me get through this and still manage to be there for him is to do things for yourself in your life. Don't put your life on hold. Go and plan things with the kids and if your husband is well enough on the day he can join in. If not stick with the plans. You have a right to have a life as much as you can and it's not selfish to do that. It actually helps you be there for him more by doing things you want and need to do for yourself. I also found too that I really had to breakdown and explain to my partner that I am going through this every bit as much as him. I may not be physically fighting the disease but it's had a massive affect on my life and I'm suffering because of it just as much as he is and I even went so far as to explain to him that he's changed so much in personality (mainly to do with some of his medication as well) and how heartbreaking it is to see that happen. Once I actually opened up in a way that wasn't argumentive and fuelled by pent up emotion on my part I think something finally sunk in with him and he does try harder now most of the time to be more considerate of what I'm going through and the way he treats me. I hope something in there will be helpful to your situation and I know how hard it is to even begin to see a way out when you're at the point you are at the moment. If you would like to talk further please let me know and I'll do my best to help in any way I can. I used to hate it when people said it to me but hang in there if that's what you want to do. You may never have the relationship you want through the cancer battle but sometimes you just need to meet halfway and decide if that's enough for both of you to get through this together.
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I'm in a sort of similar position to you. My 41 year old boyfriend has multiple myeloma. It was only about a couple of weeks after we started seeing each other that he was told he was no longer in remission.
I know how hard it can be. Back in 2014 when he was re-diagnosed we were told to expect him to be having a bone marrow transplant by April of that year. As most know though cancer plays by it's own rules and now in January 2016 we are no closer to the transplant than we were back then.
Multiple myeloma is generally known as an "old people's disease" and I often find myself thinking he's too young for this. He too is often the youngest in the waiting room or wards at the times when he's been admitted. It's a really hard thing to have to confront.
He can be tired, irritable, forgetful and even plain flat out rude at times during treatment. While I understand what it's like to feel like crap, be frustrated at not being able to do the things he wants to do etc, I also understand what it's like to be on the receiving end of that which can sometimes last a few days.
I've not coped particularly well with the situation overall I must say. I have a history of severe depression myself and tend to use alcohol as a coping mechanism, a habit I'm trying hard to break now as I know I'm not doing him in any favours with his recovery if I'm getting plastered.
For me it's not so bad when we can have at least one day a week of some sort of "normal" - you know go out for dinner (or even have dinner together), not have to leave somewhere when he's tired, he's achieved something for the day which puts him in better spirits all that kind of thing. It's those stretches when those bad days stretch into weeks with seemingly no end in sight that I struggle the most with the disease and myself.
I have feelings of total guilt when I'm angry and upset that he doesn't have the energy or is in too much pain so can't go to family events or plans are spoilt and yet at the same time I'm the first one to tell him to stay home if he's undecided and clearly looks like it's going to be a struggle for him. I battle the feeling of being a grade A bitch at times like those. Plenty of people miss out on a lot more stuff in life than that and I should just be grateful for the days we do get to be like any other "normal" couple.
What I've found hardest about finding people to support those who are caring for someone with cancer is that a lot of times people don't really understand how heartbreaking it is to deal with day after day, it is draining and does take its toll.
Anyway I'll stop rambling now and hopefully something in there has helped you.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.