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." ... View more

Yeah, there's no way I'd try to go to work after pico prep. I get a good book and try to get everyone out of the house for the day... not much else you can do. Its a bit hard to predict exactly when it will hit, but its best to be home alone when it does in my opinion. Luckily I dont' think I have to do it for a long time now. ... View more

Jules - its a gutsy move starting a new job when your still visibly affected by chemo, and saying nothing about it. Good on you! Its good to hear the company your with has a decent culture. I used to work for a major utility and a young guy there had just been through a series of treatments for bowel cancer when I started. It was a very young workplace and some people made fun of him behind his back (about being depressed etc.), it wasn't very nice. I'm still with the same employer I was with before getting sick (environmental consultancy). I came back to work when I was still very bald and weak from chemo and its definately been different... apart from receiving a few career demerit points a lot of my co-workers have been awkward with me. Things haven't really changed over time (its been over a year now). It probably doens't help that I've been messed up, but the culture there certainally isn't supportive of people like us. ... View more

Hey Al, Not sure if the CC provides career advice, but all theres been a bit of discussion on this subject on planetcancer (check out myplanet.planetcancer.org if you haven't already). My opinion is that it could go either way with employers. I've only been for one job since I was diagnosed and I didn't tell them. I kept meaning too but the right moment never came up... I ended up getting the job, but turning the job down to stay where I am. Having just been through treatment was a big issure for me and the fact I didn't know how the new employer would react was part of my decision to stay. You never can tell if people have some sort of preconceived ideas, but I guess they'll end up finding out at some point. So being up front about it might make it easier. ... View more

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. ... View more

These are great ideas Nikki and I'd love to see them all implemented. I guess the next step is getting more people in the group and I suppose that's a matter of time, but I think it would be a great benefit if we could get some sort of advertising out there... like posters in hospital wards/clinics etc, recommendations from health care providers etc. Honestly, I think health care providers need to push these things more. When I was diagnosed by my surgeon he said 'germ cell cancer, look it up on the internet' and I did. I went straight to wikipedia and google, got a lot of bad news and swore never to look up anything cancer related on the internet again. Its taken me about 18 months to get over it and since then I've found this site, and other fantastic ones like planetcancer.org and tc-cancer.com, that would have helped me out greatly back then. I've noticed that the cancer council now has a kiosk at the hopsital I was treated at, its great to see the CC getting more of a presence there. Hopefully we can use things like that to push this group. ... View more

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 ... View more

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

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 ... View more

Heya Bo, I'm doing well now, been in remission for over a year. I had testicular cancer (a rare form that showed up as a large tumour in my pelvis area, nowhere near 'that' area). We kind of fell apart after we found out and thigs were looking a bit dicey for a while, but surgery and chemo went perfectly. The first few weeks were the worst. I didn't get much info or help from anyone until I was admitted to the oncology ward (about 4 weeks after I was diagnosed and 2 weeks after surgery). But they were great there. My partner had been through thyroid cancer about 2 years before and my dad had died from bowel cancer about 2 months before so it hit my family pretty hard. However, the regional public hospital I was treated at gave us excellent support which my wife and my dad certainally didn't get at the 2 major Sydney Hospitals they were treated in. My dad's was a big name private hospital and they were hopeless there, I don't think they could have been less supportive of us (the family). If your finding that your not getting the support you need, then kick up a stink. Get onto the cancer council and maybe even your GP. I had to do that to get my case referred to the oncology ward I was treated at (initially I was put on a 2 month waiting list to see a private oncologist who was on holidays, that wasn't good enough for me - especially considering I had one of the fastest growing cancers - so my GP had me referred to a public hospital and I've never looked back). Anyway, I hope your doing alright. Steve ... View more