young survivors
hi everyone, i am a young adult survivor of cancer. i was diagnosed in 2002 at age 28 years. i am now 35. i would love to meet any other young adults who have been diagosed with cancer and chat about things that matter the most to us young ones...
was Dx in 2002, at age 28 years, with acute lymphoblastic leukaemia and somehow managed to come out the other end (quite damaged) to slowly and progressively to get on with life again. Therefore I regard myself as one hell of a LUCKY GIRL.
Since my cancer Dx I have managed to finish a university degree in Health Promotion (Honours) in order to get myself involved with Young Adult and Cancer (YAC) issues and support service development (as I noticed there has never really been much help for us YACs over the age of 25 years!). The Cancer Council NSW have been instrumental in supporting my myriad of ideas for new support services for YACs (thank god someone finally listened to all my whinging) and their advocacy training program has equipped me with skills, strength and connection with other like minded individuals who want to instrument change for the better.
I hope to meet MANY more YACs through this online support service, so jot down a line and say hi 
I was 28/29 when I was diagnosed with thyroid cancer, my son was 2months old. End of January 2005 I got my biopsy results, within 2 weeks I had my near total thyroidectomy and 1 week after that on my 29th birthday the definitive results were in I had papillary carcenoma on the left lobe.
I spent 1 month away from my baby boy and husband when I had RAI and have been clear ever since. Actually just reached my 3 year mark which is exciting.
Much like you I am just starting to feel ready to not only get on with things but to help and support young adults with cancer. I was unaware until recently that all of these networks existed, they would have really been a great help to me at the time and in the years after. Alot of people assume you get cancer, have treatment and life goes back to normal which we all know is not true.
Just this year I feel ready to speak up!
AmandaC, thanks for sharing your thoughts and I am so glad you have reached a stage where your ready to speak up 
It does take time before you have enough strength within yourself to think about helping others. you can only help others when you have helped yourself first. its not a selfish act, it is a good and smart way to do such things without burning out. I think it took me a good couple of years before i had the straight and confidence to begin to voice my concerns and do something about them. Having said that though.... 7 years down the track, i still get nervous when i talk to groups of people about my story, and i still cry every time. (which makes everyone else cry) These emotions are just ngrained so deep, that i just accept them as a part of me now
As far as you being 'unaware until recently that all of these networks existed'... that is probably because these support networks have been very fragment and run through overseas based organisations and this new Australian-based YAC site was only launched 2 months ago. How good is it we have a place of our won we can all head to and chat! i love it 
I posted this in its own section, but thought I'd put the information in the young survivors section as well. I'm more than happy to discuss the research or inspiration behind it, etc. if you are interested feel free to contact me! Recruiting participants has proven to be a difficult task so I appreciate it greatly if you chose to! Thanks :-)---------I'm a graduate student at McGill University in Montreal, and am conducting a research study looking at the psychological and emotional experiences of young adult cancer survivors, as well as how physical activity may impact those experiences. I'm seeking participants (18-39 years old, who have completed cancer treatment within 5 years) to fill out a quick (15 min max) online questionnaire. There's also a chance to win a Nintendo Wii The findings will be used to help create physical activity programs to aid in the psychological recovery from the trauma associated with the cancer experience.If you are eligible, the questionnaire is accessable at: http://hbe.mcgill.ca/research.htm If you are not, I appreciate any suggestions for the recruiting process and your help to spread the information about the study!The study had been approved by the University ethics committee & I can be contacted for further information at caitlin.love@mail.mcgill.caThank you! Caitlin
Hi Caitlin,
how is the study going for you? have you got enough responses? what is your area of research e.g. are you a post grad psychology student? how did you come about doing this study?
nikki
Hi, I am pretty new here - I was diagnosed with Leukaemia at the age of 23 and now have just passed three years in remission! I had a lot of complications with my treatment including a nasty infection that I have already mentioned elsewhere on this site so I won't go into it again.
I am interested in speaking to people who have also experienced a difficult time post-end of treatment, and a few years on.
I am finding it more emotionally challenging now, three years on, than I did at the time. I thought it would have been getting easier by now.
Hi, my name's Michelle and this is the first time I've logged on to this site, or anything like it.
Reading what you wrote made me burst into tears! I can't believe others have had similar experiences to me.
I'm 2.5 years clear from lymphoma (I'm 32) and let's just say that all the old cliches about having your world rocked, rug pulled out from under you, etc. etc. didn't even come close to describing how undone I felt.
And I'm still struggling with it all, even though I look really well and together on the outside (having my hair back helps with the whole 'normal' look, I'm sure). I feel so lost.
Hey Michelle, welcome to the group!
I certainly know what you mean about struggling on the inside and looking normal on the outside. 'Normal on the inside' is a lot different for me to what is was before.
Welcome Michelle! I am also new to the site and other like it after 3 years of muddling through. The great thing about these blogs and networks is we all realize we have had a normal response and everyone struggles to work out how to move forward. Lets hope we all together we can grow and re-define our normal 
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
Hi everyone, I'm Lauren
Was diagnosed at 22 with tongue cancer, and am 3 and a half years in remission. It's so great to have an outlet like this for YACs in Australia, I've been on the Planet Cancer site for a couple of years but it's good that we have something of our own now.
I'm passionate about advocating for adolescents and young adults with cancer so hopefully this is just the beginning of better services and treatment for those of us stuck between paediatrics and geriatrics!!
Hope everyone is well, look forward to speaking with you all soon!
Loz 
Welcome to cancer connections Lauren.
If you have any questions or ideas about how to make this site better do not hesitate to drop me a line at any time.
Talk to you soon.
Hi Loz,
Great to 'meet' you and hope to chat more with you. I totally feel the 'stuck in between' thing, YAC's are a very unique bunch and I feel as though there needs to be more outlets for us, like this one, which is perfect.
Hi Loz!
glad to see you here now, it is good that Australia has a place we can all meet and hang out now 
how exciting!
would love to hear what things have you been involved in with your advocacy work?
nikki
This is the first time I've been back to this website since last year, and I'm happy to see it's improved!
I'm a young adult survivor of pancreatic cancer (diagnosed january'08 at 30, 32 now...still qualify as young, right?
) - it's so nice to see a forum like this.
e
hey your younger than me! :0
Hey Nikki,
We've met on other websites, but its good to see you again!
I was diagnosed in 2007 with testicular cancer and my wife was diagnosed in 2005 with thyroid. We met in 1999 and we're not sure why we got so lucky with this disease... Anyway, we're both over 1 year in remission now and doing well and have just had our 2nd child. Interestingly, we've only just discovered how much support and activity is out here on the interwebs for people like us, so we're kinda new to all this. I think we've both been in denial about it until recently.
Anyway, thanks to everyone for putting themselves out there and I hope to speak to you all soon.
Steve
Hi Steve,
Its great to touch base with you again too 
It is quite unique that both you and your wife have recently gone through cancer as young adults. CONGRATS on the birth of your second child, what a HUGE accomplishment that is after all you both have been through. yay!
I see you have joined the new YOUNG ADULTS SOCIAL GROUP - welcome! I hope this group and this site bring both you and your wife much needed connections that can help make the integration of cancer into your lives a little easier. I know for me.... that doing all this work around setting up services for YACs has helped me find a way to include cancer in my life, rather than trying to push it aside and pretend it did not happen...cancer has been an absolute life changing event through both the good and difficult times... 
Hi there everyone,
I often joke about it with others who I have met on this journey that its weird to be part of a club (that I didn't really want to be a part of???). I have been sick with chest infection and couldn't join in on the chat and advocacy. I have now returned to "lurking" on some sites.
Here are some links here about YAC sites:
hey misti, welcome back. chest infections totally suck...all those friggin chest xrays you have to do for them suck too! hope you are well on the way to recovery 
thanks for the links... i2y is great and CanTeen are doing a fab job with the 'now what?' site by helping the offspring and siblings of AYA with cancer.
i will post up a heap of links either on the YACs home page or in the new YA social Group in the not so distant future (probably will do both)
The sexuality live chat event was a hoot, it went really well. The advocacy training that is on this weekend.... don't worry there should be more of these to come, or you can still contact Rory at the CC and sign up for one of the more frequent advocacy trainings in your local area that is open to all ages. you will still learn bucket loads and you can come join our advocacy network - scheduled to form in the second half of this year. Rory's contact details are:
Rory Alcock | Advocacy Development and Networks Officer Cancer Council
> NSW | 153 Dowling St, Woolloomooloo NSW 2011
> T: 02 9334 1859 | F: 02 8302 3530 | E: rorya@nswcc.org.au
great to see that you have joined the new YA Group BTW
we should have loads of fun with it!
Nikki
Hi All,
I'm excited to be starting off with a new Younger Adults Survivors group on this site next week, and wanted people to know that we still have one or two places left if anyone is interested in joining us!
This is a private group, which will be running over 6 weeks with weekly live chat sessons (these will be on Tuesday evenings)
If you're interested, please let me know - I do need to talk to people over the phone before placing them in a group, so send me a private message and I'll be in touch!
Cheers,
Kate
Hi all survivors!
I'm actually nowhere near the "survivor stage"- am a newbie, just got diagnosed with a dodgey brain tumour 3 months ago. I'm 32 and a tad twitchy about it all although some days are actually surprisingly ok (and then there are the rotten ones). But it's nice to see there are beaming survivors like you guys out there! (yay)
I guess what I was wondering is would anyone care to share with me what emotional and life-planning tools they used to get them through the limbo stage after diagnosis, initial treatments (I've had a craniotomy and radio) and then the big waiting game...??
Any hints and wisdom appreciated!
Yvette
Hey Yvette,
Sorry to hear about your dodgy tumor. The one thing everyone told me when I was in the limbo stage is that it gets easier (no matter what happens) and it has for me. I'm actually a long way off being a 'survivor' too (I've got another 5.5 years of remission to go - apparently I have to make it to 7 years instead of the usual 5) but I wasn't going to choose 'I have cancer' because I don't believe thats true anymore.
Anyway, the waiting is always the worst part of it. I've found the best way to deal with it is to get out there and talk about it. Get referred to a psycologist through your GP or oncologist, oncology patients can get it free through medicare where I live, or talk to people like us online. I think the worst thing to do it to pretend you're 'over it' and act like nothing has happened.
Cheers
Steve
hey Steve, likewise i don't have the 'normal' 5 year 'you are a survivor' tag.
with my cancer there is no 5 year / 7 year marker, instead we are told it may reappear any time again, but as time goes on it is less likely.
maybe we need a new tag word instead of using 'survivor'?
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.
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.
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.
here here gal!
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
Hi Yvette,
Sorry to hear about your tumour, its early days for you and its normal to feel a little frazzled and uncertain. I focused on planning for the future…almost compulsively actually…not so good! I decided I wanted to go to uni, have more kids, buy a house, go on holidays and the list just kept me thinking further and further ahead which for me was like saying to myself I was going to live for a long time.
But what Steve says is true the best way is to seek solice in places like this and see your GP to get referred to a psychologist that can help you work through your thoughts.
Waiting is always the hardest.
Hi Yvette,
I know that the term survivor is not for everyone... but in my eyes you are a survivor of cancer right from the minute you are diagnosed, whether the docs give you a good or poor prognosis.
I was given a 5% chance of surviving my cancer when first diagnosed and for some reason i automatically thought.... '5 people out of a hundred survive, therefore this is not a death sentence - and i will be one of those 5'. that was 7.5 years ago and the road to get here has not always been easy.
Definitely the most confronting time for me was the first few years and learning to cope with the fact that I might die from this disease. but i still managed to fill each day with living. i did have a few days when i would cry because i felt my young body had betrayed me. and there were other times that i was so god damned isolated i suffered depression. But i had no services like this one to link into - they just did not exist back then. then i found Planet Cancer, which was a great start, but i wanted to and needed to connect with Australians.
so my key to getting through the 'limbo stage' you are experiencing was CONNECTING with others in a similar situation. A few years down the track, when i gained some confidence and social grace again, i also found a passion was inside me to find new ways that I could help YA Australians connect and not go through this isolation that i experienced.
i hope this helps you a little 
Nikki
Yvette, I agree with Steve about finding support and with time things do get better, esp when you can see/feel that your side effects heal and body recover. Secondly, start to do some of the things that bring you joy and take things at your own new pace - whether it is a day at a time or a month. Then you can start to plan 6 months ahead etc. I recommend the Living Well After Cancer workshop by the Cancer Council.
Hi young survivors 
Great to see you on line and read your thoughts. I am keen to work towards producing a young adult specific Living Well After Cancer program that would be run by trained cancer survivors and the Cancer Council NSW. I would love to hear from you as to what you would like to see in the content?
If I set up a survey online would that assist OR is it better to use this format?
Mags 
Hey thanks..... a LWAC program for YACs would be fab 
I like the sound of a survey Mags, then maybe it should be posted in its own box on the YACs homepage to attract a better response rate rather than hidden within a conversation topic. would you agree?
Nikki
Sounds like a great idea. I will look in to this
.....Watch this space!
Cheers,
Annie
hey Mags, i see you have had a name change....
so hi anniem!
Isn't it just crazy how you can change your identity at the flick of a button - cool!!
look forward to a LWAC for YACs 
Sounds like a great idea. I will look in to this
.....Watch this space!
Cheers,
Annie
Agreed - surveys are my thing. I'm not 100% sure about what the LWAC program involves but I've had a quick look and it seems like it covers most things. One area I'd like to see covered is how to deal with issues with kids such as genetic inheritance issues, what to tell them (especially during treatment/hospital visits)etc.
Steve
Mags,
My preference is for a survey.
Some ideas about content for LWAC:
- work and finance issues eg. finding new work, returning to work, dealing with colleagues, superannuation and income protection insurance, health insurance etc
- children / familial cancer (fertility, IVF, community support, home care. carers etc)
- lifestyle and image issues (diet, nutrition, exercise)
My husband and I went to the Cancer Council - Living Well After Cancer workshop last year and it helped me get back on track as I was a bit lost after treatment (just wanted to run away onto a farm and not see or speak to anyone). It was like, what the hell just happend!
The exercises in the workshop are excellent - ie. write down the top ten things you would like to be doing and assessing what you really do etc. Also to make sure you have 5 mins a day doing something that brings you joy and is just for you (its not a crime).
The main issues that weren't covered were fertility and financial issues (I was the youngest in the room) the majority 45+. Young adults who are diagnosed often feel the cancer has robbed them at their peak of their career and health, when they have young children (who are dependent on them). Also, for those without children, realising the future consequences of having children and being unwell or not being around for their upbringing. This is a huge emotional distress which appears to be unrecognised by the rest of the general population even within the cancer community itself.
jules just nailed it - work, financial and lifestyle issues also definately need to be covered.
I agree with Steve and Jules these issues are never discussed and most of us are in the dark. I think its would be great to organise LWAC program for us YAC, so much easier to face these things with support.
I look forward to finding out what is install for the program 
Amanda and Steve,
May I ask who helped you (besides each other)? Any tips would you suggest for anyone else in a similar situation? Its great when those close offer to cook a meal, help with chores or the kids rather than expect you to fit in with them.... sound familiar? Sometimes its hard just to do simple things let alone anything extravagant like going out - or to go away. I struggle sometimes with my husband and we don't even have children! Credit to you both for getting through each of your treatments, stay strong and I look forward to hearing about baby number three 
Hey jules,
We had issues with help, especially when Amanda was sick. She might elaborate on it more, but basically most of her family disowned her between her surgery and radioactive iodine treatment. It happened on the day we moved out of Sydney too (where we'd always lived), but we didn't really have much support there anyway (hence the moving at a difficult time).
We ended up getting help during Amanda's treatment through the Salvation Army. The local early childhood nurse reported us to DOCS as soon as we said we may need help during cancer treatment, so I'd advise people against turning to anyone like that. Luckily DOCS were a bit more understanding, but they still didn't do anything to help (they were 'too busy' - like everyone these days, god I hate hearing that). Anyway, the Salvo's were great and actually organised a paid in-home carer to take care of our son a few days a week (we coudn't get him into childcare at that stage) and a volunteer to visit every now and then. My mum came and stayed with us when Amanda was off getting treatment, which allowed me to remain at work. But she burnt out for a while after Amanda came home and we didn't see her for a few months.
It was annoying that we had to turn to the Salvo's because we were always entiled to the in-home carer apparently, and thankfully they didn't have to pay for it (I think medicare did). Had it had been organised a bit earlier, we probably would have had the carer more than 2 days a week (at least during Amanda's treatment).
Things were better during my treatment because Seb was eaiser to look after and already in day-care 3 days a week. We were allowed emergency care with his carer, but we didn't need it too often. I was lucky too in that my employer paid me for much more sick leave than I was entitled to, but it came with the expectation that I return to work 3 days after my last shot of chemo... which was kind of rough. If I was given the choice I would have worked something else out.
Steve
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
Hi Steve and Jules, I totally agree about family that disown you. My husbands family is without a doubt the most pathethic people i know. They only live 10 mins from us and wouldnt come to help me with the kids but can drive 16 hours interstate to help his sister {who isnt even sick}. My parents are of some help, but both still work full time so i dont really ask for help. My kids primary school refered us to DOCS, and we were placed in a program called "Brighter futures" through them. I have a case worker who is fantastic. She has organised for my 2 toddlers to go to family daycare 2 days per week so i can sleep, she takes me to appoitments and will even come and help me at my home. She has been a great deal of support to me and our family. Our kids primary school has also been fantastic, they organised for 4 of our kids to go to Stewart House in Sydney for 2 weeks as they wern't handling my sickness very well and were starting to act out and pick fights at school, which is completely out of character for my kids as they love school and their friends. The deputy principal even came and picked them up and drove them to the drop off point to help me as i didnt think i could drive that far. My case worker has just organised for my eldest son {12 years} to go to camp in the school holidays as has has never had a break since ive been sick.My husbands work has also been really good as if i need help they will work around us. I think anyone needing help with school aged kids should try their kids school as most schools have access to various support programs etc or they might be able to put you in touch with someone.
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.
another gal with pure guts and determination - i love it!!
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!
I just found an online cancer terminology dictionary: http://www.cancer.gov/dictionary
Its got a definition for just about everything. Here's the definition for survivor:
survivor (ser-VY-ver)
"One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life."











Hi Nikki, Welcome to cancer support online. My Name is Raul and I am the new Online Community Coordinator. Would you like to tell us a little bit mroe abotu youy experience? Look forward to hearing from you, Rul