young survivors

[Nikki_YAC]

i also agree with Amanda, Jules and Steve here. it is hard sitting in a room with people who are much older and actually have had the opportunity to live life more, have the careers, the children, build a nest egg, and often many of them are enjoying retirement, with time on their hands to sit back and enjoy life. we YACs have not reached this life stage yet, and it is completely stripped from us as soon as we are diagnosed. the fact that these issues are not addressed by the health team throughout a YACs cancer treatment only makes matters worse through isolation and sheer frustration. If a LWAC program can be shaped for YAC issues that would definitely be a great start in helping us alleviate this isolation. Annie, because we YACS are demographically more isolated due to smaller numbers in diagnosis compared to the older cancer population.... how do you envisage these YAC LWAC programs to be delivered? I can't see how you would get larger numbers in small regional centres, or YACS to travel to the city fro such programs, as they often have children to look after, work/study commitments and less finances available to spend on such things. Nikki

[Nikki_YAC]

Hi Michelle, i am so glad you have found this site to feel you have a connection with other people effected by cancer. it makes such a huge difference to see that you are not alone in this experience. its hard with the lymphoma's (and leukaemia's - which i had) because the treatment is SO intense, long and re occurrence being in the back of your mind. i was still struggling BIG TIME 3 years down the track coming to terms with it all. i though everyone had the intensive style of treatment that the blood cancers have, but when i started going to support groups and hearing that the treatment for other cancers was not nearly as bad, just made me feel worse! it has got better over time, and i have used many paths to get here, but all i can say is it takes time and hang in there. stay connected :) Nikki

[stevec]

I just worked out that I have 7 years of surveillance, not 7 years of remission... and I think the surveillance is yearly after that anyway. I dont' know, I'm confused about it. No-one's ever told me which words to use to describe where I'm at... I've heard other people say 'full-recovery', 'remission' etc. perhaps that's something the CC can advise us on? I like the word survivor, I think we should stick with it.

[AmandaC]

That's what I thought in the beginning then you said we are both in remission I went...oh OK! I have 5 years of tests before I am classified cured/remission not sure then I will be checked for the rest of my life first yearly, then 2 yearly and so on I think. But my thyroid levels are checked almost monthly at the mo...maybe cause of the whole baby thing. I agree survivor sounds strong and absolute, I love the idea that its behind me and what is in front of me is unwritten and infinite.

[jules_jp]

Hi there, My understanding is as follows: "remission" the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity "survivor" as someone who is "living with or beyond cancer", someone who: * has completed initial cancer management and has no apparent evidence of active disease; * is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness; or * has had cancer in the past "cancer free" 5-10 years of being disease free (depending on the type of cancer and disease). http://www.breastcancer.org/questions/cancer_free.jsp Some of these are from Wikipedia. Most of us YAC here seem to be in remission because they are still undergoing treatment or have a possibility of disease recurring. It helped me a lot to try & figure out where I am in the bigger picture. Keep in mind, sometimes cancer patients don't understand terminology because of information overload compounded with chemo brain! I hope this helps.

[slacker]

That word "remission" just gets me down! It feels like a reminder that cancer is always hanging over my head - and that's the last thing I want is a(nother) reminder! I survived. I am surviving. I will continue to survive! (Not just survive, but live and love living :)) Yup, I'm a survivor. We all are.

[Nikki_YAC]

i like survivor too. however it took a while to find it fitted with me. Steve, i think with each type of cancer there are different words thrown at you by the docs. i agree, it is confusing and the variation in terminology doesn't help us does it? Julie, great research into the word use. you are definitely a great source of info 🙂 thanks! Nikki

[Nikki_YAC]

here here gal!

[Nikki_YAC]

another gal with pure guts and determination - i love it!!

[AmandaC]

Well looks like we are a group of strong willed survivors, just imagine what this group could accomplish if we all out our minds to it!