So background is my family and close friends live in another country. Live with spouse and small kids in Canada, a few good friends but not life long childhood friends type thing. Spouse has narcissistic tendencies. Stage 4, not on treatment.
I'm really struggling with my support system right now. I'm working on connecting with some other mums in my area that have or had cancer. Doing the regular therapy. I'm trying to get out there but I'm naturally shy.
I just feel like I'm not getting supported at home. My in laws try very hard but I'm not their kid so I never feel like I can just break down and sob kind of thing in front of them. They are amazing on a practical level and I know they will make sure my kids are ok but god what I wouldn't give for a hug from my dad (he's passed so not possible but you get the feeling).
My spouse seems to have totally missed the part where I'm sick. His life has not changed. In fact he's loving the fact his mother is always here and always doing stuff for him. He will literally sit on the sofa and call for her all day. I can't tell you how many times I've had to explain I'm tired from the cancer, from the treatment, the children. He just complains that I don't sit up with him until 2 watching his tv shows, then get up with the kids. He has decided where I will die, no discussion. A hospice (bring kids once a week) or I can fly back to England alone. When I tried opening up and explaining that I was sad the kids would miss out on special mother and child moments he told me not to worry. He would get remarried and they would have a new mummy. When I said this whole thing was so unfair he replied that it was just bad luck and the way life was. I was recently injured and woke up in extreme pain, I needed help to get to my medication. He wasn't there
I phoned him for over an hour, no answer screamed for him (next room). Thankfully my four year old heard and helped me. He told me I was fine and the worse that would have happened was I stayed there until morning. I was so scared laying there alone in the dark and in pain.
I've tried so hard this whole time to make him feel supported, made sure he had time away from me and the cancer, done things with his friends, encouraged him to talk about his feelings. But I just never get anything back. His friends never come over, they've never once offered the family help. But he thinks they will all support him when I'm dead.
I've been having some issues with hospital appointments and been trying to organize it. I desperately need a procedure ASAP but nothing's happening. He spent the day berating me about what I should be doing, which I had already done.
I know cancer is stressful for carers but this just seems cruel. He tells me to rely on him, to share my feelings but how do I do that when he turns against me. I don't understand how another person can be so unsupported of anyone, let alone someone they claim to love.
I'm trying to get out there and be with others but it's getting harder to do. My social worker doesn't know what to suggest at this point. My care team are horrified by his behaviour. I'm beginning to feel utterly alone. And honestly I have a chance at a clinical trial and this lack of support is really making me wonder if I can do it. I'm so tired, I just don't know I've got it in me to commit to something like that.
Sorry this turned out way darker than intended. I do have good days, most days are good days. My children are amazing. My team amazing. Great support from friends and family in England. I'm just really struggling with the lack of support in my own home.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri
November 2019 begin cetuximab and irinotecan