My heart goes out to you Maggie, as I know that a cancer diagnosis can be really hard to deal with (at any age) but especially for young people when coping skills are only just in their infancy. I can relate to what you've said about family and friends not understanding that although active treatment is over, there are still long term effects to deal with and adjusting to your 'new normal'. Sometimes I say that I can't do [insert activity here] because I'm fatigued. My family's usual response is 'We're all tired!'. It drives me insane.
Prior to my diagnosis at the age of 25, I was living independently and working in the city. After finishing treatment in the city, I've had to move back in with my family in the country. Since finishing treatment I've experienced anxiety, fear of recurrence, frustration and fatigue. Frustration because I miss my old independent life and I hate my parents telling me what to do. I've now been in remission for 18 months and most of these things are not so much of a problem.
If you haven't already, I highly recommend you do a 'Look Good, Feel Better' workshop. I did one towards the end of my treatment and it's a lot of fun! They do workshops for teenagers. After finishing treatment I took part in a study called 'Recapture Life' which is conducted through a program similar to Skype and looks at how young people cope in the first 12 months of remission. There were two other people in my group and I still keep up with them on Facebook which is great. An organisation called Redkite also offers support for young people. Something else that might be useful is YouCan - they have a group on Facebook, although it hasn't been very active.
I will post the links so you can have a look. Happy to chat with you if you want.
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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
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The Dalai Lama says there are only 2 days you cant do anything about that's yesterday and tomorrow. Today is the day and sometimes it takes an illness like cancer to teach us.
You've expressed your thoughts beautifully.
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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.