Hi everyone, I'm Karina and I'm a survivor of both Vulvar cancer and Stage 4 Hodgkins with 8 months of chemo. I finished chemo last year and have had struggles with post chemo consequences and how emotionally one goes on after the trauma of what cancer and its treatment can do. There are two reasons I joined this group. One is that I needed to blog and chat to others about all the feelings coming up for me post cancer, and of course the fear of yet another cancer visiting me. I know how important letting all these feelings out is. And secondly, I'm a therapist dealing with depression and anxiety and in my work I run groups for free for those who are survivors and are struggling with life after cancer. so there is no financial benefit to me in suggesting if anyone would like to join one of these in the Bondi area. I run them for free because I need for people to chat and learn and grow and be supported in their very unique type of trauma and sadness. So in either way, I am happy to be a part of this group, if only for my own healing. It will be nice to belong here and hear your stories.
Warm wishes Karina,
I am currently going through treatment for a brain tumour and I know that it is a life long thing, I think about the future far too much! I always know that it will be hanging over me and the feeling isn't good. Feel free to have a chat, wish I was in Sydney but I am in Melbourne 😞 would love to find a group like yours locally. The emotions that are felt, the fears, anxiety and sadness are like no others felt before.
So nice to hear from you. I'm really sad to hear of your struggles and of the fear you must be living with. How old are you Maggie? I'm not sure if a group like ours exists in Melbourne as it is something we devised purely because of my involvement in that world. To be honest it has been difficult to even get the word out there to those suffering like you who live in Sydney who need this kind of support.
I'm happy to chat to you though at any time about what you are experiencing via this site as I know how important it is to be able to speak with others who get it.
Tell me about your treatment and what life is like for you if that is something that feels comfortable. I'd really be interested in the feelings you are going through and the challenges you face. It can be a very lonely place. Because of the hours I work, online chat is probably the most reliable way, but I will always be happy to receive your emails. Warm regards, Karina
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.
Elle, firstly I'm just so sad to hear your story. What a lot for a young couple to deal with. So many "ifs" about what the future holds whilst dealing with immense fear and sadness. I truly am so sorry.
What you express about what its like for you is so powerful and very common for people not directly experiencing the cancer but are still jolted and affected by its consequences, both for their loved one and their lives. There is no entitlement about who can be the sad one and who has no right to be sad. Cancer affects every single soul that loves someone who has it as well as those who have it. I remember when I was diagnosed, I sat with my three adult daughters and said, "We're going to need to be real to survive this. There will be times it gets too much for you and you'll be angry, frustrated, just need to walk away. There is no wrong. We will all do what we need to do to survive. That way, I can feel free to get angry, be frustrated and walk away". It was a very important part of our coping with 8 really hard months of fortnightly treatments that nearly killed me on one occasion when I had pneumonia. So just remember, you feel what you feel. Its never wrong. You 'shouldn't' feel anything specifically. And I think if you feel you can share your fear and frustration with your husband, then he will feel free not to be so brave and let go and be exactly however he feels at that moment. Having to pretend to be okay when we're not is a lot like how we feel when others expect us to be back to normal and we're not. It is what it is, and the healthiest place for us to be - and the place that gives us the endurance to last the distance - is to be exactly as we feel. Love Karina
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.