How stressful and distressing! I totally get it – I also want to know everything, and I’m also supporting someone who frustrates me because he hates talking about cancer.
I hate to pander to stereotypes, but I'm sure gender differences come into play here. It often (not always) seems to be the women who want to talk it all through, and men who are more reticent. But, of course, that's a generalisation.
What I've learnt is that there really is no “right” way to deal with cancer. His way may well seem defeatist to you – it does to me too – but, ultimately, he’s the one with who is sick, and it’s entirely his right to approach this however he wants to. He is in charge of his body and his treatment and how he responds to it and who he talks to about it. Just as you would be if it happened to you. You may not like it and you may not understand it, but you do have to accept it. In the beginning, I found this incredibly difficult and confronting. But now I find it comforting.
It's worth noting that your boyfriend will have lots of people telling him what he should do and how he should think. My loved one, for example, has had people telling him to work through his bucket list. But he doesn't have a bucket list – he says that if there were things he'd wanted to do in life, he would be doing them. If this turns out to be his last year or two on this planet, then he wants to spend it doing the same things he did before he knew it might be his last year or two.
I guess what I'm saying is we need to respect the choices of the person who has cancer, even if – perhaps especially if – they don't make sense to us.
Besides, he may not be as disengaged as you think. Hearing about your latest results is incredibly stressful. Perhaps he just wants to absorb it alone, and take time to process it before he talks to you and the other people in his life.
At the end of the day, you and your boyfriend are going through this together, and you both need to deal with it in the way that works best for you. Unfortunately, there are differences between what he needs and how he deals with it, and what you need and how you deal with it. That's what you need to work through.
It sounds like you’re a young couple, and he may feel guilty that you’re being dragged into his illness. He may feel better going to the doctor with someone who’s a bit more removed, like a friend or another family member, who can then inform everybody else. That's not a rejection of you. He needs to identify what would make him most comfortable in those appointments.
It could be that he does have feelings that he wants to express, but is worried about telling you. The hospital will have a social work department he can access. Encourage him to use the counsellors on offer. Encourage him to use the Cancer Council service Cancer Connect so he can talk to someone in the same boat.
Whether he chooses to or not, you should take the opportunity to talk to someone. Use the hospital, get a therapist, or try the Cancer Council. The best advice I got, right at the beginning of this experience, was to seek out the help on offer and say “yes” to all of it.
One thing that helped me was gathering a support team together and starting a private Facebook message group to discuss what was going on. The person with cancer isn’t in it – it’s just for us to talk about what’s going on, how best to help him, and to vent. At first I felt guilty for talking about my loved one behind his back. But, as the main carer, I got over it. Frankly, I need the help. As carers, we spend so much effort being strong and supportive. Sometimes I just want to vent and cry. While you should never feel guilty for needing to do that, it’s good to have a group of supportive people around you who are prepared to hear it, because your boyfriend may not be the right person at the moment.
Being diagnosed with cancer is life-changing. So yes, he probably has changed. That's not necessarily a bad thing. I totally understand your frustration about the fact that he won't talk. But that could just be a stage. You don't say what your boyfriend's prognosis is, but even a diagnosis of curable cancer can come with grief and all its complications. Shutting down emotionally is a classic way humans deal with fear. It probably won't be forever, and my advice is not to push it. If he doesn't want to talk about having cancer right now, then don't. Enjoy your days, seek out the fun stuff, make awesome memories. Live in the moment. The person I support is much more likely to bring up his feelings when we're having a beer in the sun and talking about something completely different. In other words, he talks when there's no pressure for him to talk.
I honestly don't mean to downplay your frustration, because I totally get it. I'm just telling you what's helped me.
