My husband and I are both 29 and were planning for our future and just starting to try for a family when he was diagnosed with a rare cancer. It has turned our whole world upside down, we can't plan anything for the future because we don't know what we will be facing in 6 months or 12 months or five years. He is nearing the end of chemo, which has been "working" so far, and will then need surgery. After that they'll decide whether he needs more chemo.
People keep saying things about how it must feel good to only have a couple of chemos left, how we're near the end of treatment. We're not. Depending on what they find during surgery, he could need more chemo, and if he does, probably a more aggressive type. He has to get healthy enough to be able to even have the surgery, and then it's a long road to recover from that.
People don't understand that our life won't just go back to normal after this. We won't be able to just kick back at Christmas and laugh about the whole experience and how we beat it. Even if we get through it this time there is hopefully a whole life ahead of us that will be different now. We'll always be worried about it coming back. We might not have kids. We'll change our whole lifestyle to be as healthy and as happy as we can and to set out to do whatever we want to do and make the most of everything. But it will never be normal again, it will never be what it was before, and that's a really hard thing.
We had good news from the doctor this week and I should be happy but for some reason now that we're so close to the end of treatment it is really hitting me - that to other people it's over, but to us it's really just starting, there is so much still ahead of us and it has already been so long. I feel selfish for being upset and angry and sad but I am really struggling to keep up the brave face, and feel like I need to be positive for my husband's sake But at the same time when other people are being all chirpy about it I feel like saying to them that no, actually, we're at the start of a long road, we've come a bit of the way but this will stay with us in some way for the rest of our lives. I'm finding it really hard to get the right balance - I don't want people's pity and I don't want people to think I'm not coping and to start doing things for us and taking away our normal lives, but I also don't want people to think I'm not hurting, because this is the hardest thing I've ever had to do.
Hopefully being on these forums will help me have a way to vent and to work out some of these feelings. I'm finding it really challenging to be a carer but then I also feel like I have less right to be frustrated and scared and upset because I don't have to go through it first-hand, whatever I'm feeling is nothing compared to my husband.
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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.