young survivors

[stevec]

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

[jules_jp]

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.

[stevec]

jules just nailed it - work, financial and lifestyle issues also definately need to be covered.

[AmandaC]

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 🙂

[jules_jp]

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 🙂

[stevec]

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

[#7]

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.

[Nikki_YAC]

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 🙂

[Nikki_YAC]

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

[Nikki_YAC]

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'?