Hi. My name's Hope and I'm new to this forum and to dealing with cancer in general. My partner, who's name is also Hope, has Primary CNS Lymphoma. I hear that this is a rare cancer that people are not expected to survive more than 18months with it, if that. My partner was diagnosed 4 years ago and had one round of chemo/radiation to her spine last fall. We've been together since this spring and every so often I find it hard to deal with it alone. She doesn't like to talk about it and it doesn't really effect her other than the fact that she tires easily and we have to be ware of fevers, headaches, etc.
I'm not exactly sure what I'm looking for, but I know that I feel fairly alone in this whole situation and would like to hear how other people deal with their spouse's/partner's cancer.
She isn't in remission, nor will she ever be. They can't operate because the tumors are on her spinal column. It's kind of this limbo, which I've never really thought of cancer as being. I always thought that it was fight or die, but she's this exception to the rule, where you just have to live with it. Sometimes I feel like it's the elephant in the room...at least for me. She doesn't think about it (so she says) and her daily life doesn't falter because of it, but I often worry about the slightest colds or headaches. When she says she feels sick I go into nurse-mode (which is my profession) and I find it hard to separate the lover from the nurse.
Does anyone have any experience with this cancer? Or with being the wife/husband of someone with a cancer where you just...live with it?
Thanks in advance.
Also:
We're thinking of pursuing have more children (I have two toddlers from a previous marriage), but I'm frightened of the prospect of having 4-5 children and then her cancer turning agressive. What will I do with that many children if she passes away? How could I possibly face it? I attempted to discuss this with her, as it is something I refuse to pursue without adequate discussion on the possibilities and plans for the future, and yet she continually says "Please just don't go there" or "I don't like to think about it" or whatnot. Well I will be the one who is left and I NEED to dicuss it. I need to be reassured that there is plan in place for when and what if.
I'm just so lost and I feel like I can't talk to her about it because she's stressed enough with her everyday life and I'm the one that brings it up and worsens the day with talk of something she's had years to comprehend and wrap her mind around. I, however, have only had months and most of that time I haven't been allowed to deal with it because of her insistance that we not talk about it.
