Friends and family expect me to be fine

[Maggie_D8]

Hi everyone, I was diagnosed with thyroid cancer when I was 15, I'm 16 now and although my treatment is almost finished I feel as though mentally I'm still at the start of everything. I find this especially difficult because all of my friends and family have forgotten, and don't realise that it still affects me. Anyone else understand?

[GHT]

Dear Maggie I am sorry you have had to go thru this and be so young. I am in my 50's but had cancer this year for first time and know what you mean. Friends and family often think that once the cancer is dealt with that you are back to normal. But cancer can have ripple effects emotionally and socially. I think they just don't have your insight and maybe just focused on the end of illness and their relief.. It can feel lonely and confusing. Please feel free to keep talking on this site and maybe join a group for young people with cancer experiences eg Canteen or other support. Maybe ring the cancer council for info. My heart goes out to you as does my understanding that cancer recovery isn't simple and clear cut. Grace

[magagie]

Hi Maggie, I understand, it's all well and good at the beginning but it's never truly over for someone who has had/does have cancer. The emotional rollercoaster that it is, is hard. I am here if you want to chat, vent and do whatever you need, no judgements here. I myself have cancer and I sometimes feel...do people forget? Keep strong and message me if you like 🙂 Maggie.

[Karina31]

Hi Maggie, One of the hardest parts of recovery or cancer itself is what others do with their own discomfort around our illness. Its difficult for them so they say things that are not always helpful. They want it to be over so once the treatment has ended, feel they can let go of their worry and tell you you are okay. There is never the same normal for those in or post treatment. The treatment given has an agenda quite separate from the cancer itself. It crushes the cancer and crushes a part of us both physically and emotionally. Its really so true, 'you can't know unless you know'. All I could share and offer you is there is certainly a new normal for us. And that is absolutely fine. Only we can really understand the battle we fight or have fought. I'm sorry you have experienced others expecting you to be fine. Its painful. I guess I wanted to say "have you any idea what I've experienced and lived through" - "how could I ever be the same me". It doesn't mean the new me is any less, but there is no doubt we are all irreversibly altered by this experience. Warm regards, Karina

[GHT]

Karina Your post made me cry. People are always saying to me " so they think they got all the cancer so you are ok now" or something similar. Well yes the cancer has been successfully treated it seems but I have a lot of scars physically from treatment and emotionally ( and financial!). People just don't want to contemplate suffering if they can avoid it.its not that loved ones are mean. They just simply haven't had to face it. I haven't had the type of cancer that warranted ongoing treatment for years (unless it recurs of course) but I have paid my dues and then some and know what I didn't know before. CANCER IS A BIG DEAL!

[Karina31]

Oh wow I really hear that! It really is a big deal. The year after treatment for me was very difficult and I wanted to scream from my gut for what the treatment had taken from me. Then I felt such shame because I was 'cancer free'. How could I be so ungrateful. I'm alive. It is what it is. As well as Hodgkin's I have had Vulvar cancer and many operations to take parts of me away, so I imagine your Gyno cancer treatment was quite invasive and affected all that being a woman can mean for you. Its hard for people to understand. There is loss, bereavement, shock, and most of all, we now know that life can be taken from us at any moment. I used to look at people in the street talking and laughing, looking at clothes in shop windows, having lunch and thinking "I remember that. Death was something that comes much later. Getting up each day and just planning what needs to be done and then with one massive jolt - none of it matters any more". You can't 'unknow' something that we now know. Its there for keeps. The innocent daily expectation of being there the next day and the next Christmas or the next birthday is over. Nothing is certain any more. its very scary. Of course your life is different now Grace. How could it be any different. You have been through something huge. It will take time to grieve and to feel you can trust life again. Its hard when others feel they need to take the grief from you because they want to move on from the fear, but that is their work to do. We can only be where we are and do the best we can every day, Warm wishes Karina

[nello]

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. http://www.behaviouralsciencesunit.org/recapture-life.html http://www.redkite.org.au/ http://lgfb.org.au/