All fired up

[#1]

If we define advocacy as speaking with and on behalf of others how do you choose what to advocate on? Is it related to your cancer experience? Is it what you're passionate about? Is it an area of most need, and if so how do you define this? Is it because there's a ready 'fix' that will save lives? I ask these questions because there are some causes that you rarely hear people speaking out on e.g. bowel cancer hence the Cancer Council's current campaign ' get behind bowel cancer'. Bowel cancer is Australia's second biggest killer, yet it doesn't get the attention it deserves. Is this because it's not a 'sexy' cancer? 80 people die a week in Australia yet more than 30 of these lives could be saved each week if the Government committed to full implementation of a biannual screening program for over 50s. What gets you fired up?

[harker]

What a fantastic series of questions! You've got me in. I'm thinking about it, OK. H

[#3]

Glad they caught your interest. Looking forward to hearing your thoughts. Rory

[#4]

Hi Rory & Harker, Scarey stats for bowel cancer & I know that is just one example. I guess creating awareness is one great thing the cancer council does. However I know that most people I speak with who have had cancer had some feeling or symptoms before going to the Doctors. Could it be that men are the worst offenders in this regard? I think so, without being offensive to men, I am married to one & have 2 sons so I do feel passionate about raising some awareness for men to understand their bodies a bit better and to have regular check ups. It has just taken me 5 years to get my husband to go to the Dentist! I dont quite understand why this is. Most women tend to keep on top of of their health a lot better than men do. With heaps of programs over the years for breast cancer and cervical cancer, i think men sometimes get kept out of the loop a bit. I guess prostate cancer is one form of cancer that has had some awareness programs over the years, and as you said Rory also Bowel cancer. So I guess that is one thing I get fired up about. But when it comes to cancer you are right, there are so many things to keep us all on our toes.

[#5]

Hi Vanessa Thanks for sharing what gets you 'fired up'. And you're so right that 'there are so many things to keep us on our toes'. R

[samex]

Hi guys, As a bowel cancer survivor, these comments touched a chord.It snuck up in me but I was having all the right checks(family history etc). What I did though, was as a working Mum, left myself until last and until I was so ill that I had to something about it. I was finally admitted to hospital on the Thursday but had been in an emergency on the Monday night with severe pain, had X-rays and an enema so felt a bit better and took myself back to school (teacher) by 7.45 the next morning despite the pain. I had emergency surgery on the weekend. I was my own worst enemy. So perhaps it is rethinking our lifestyles and sense of obligations to everyone else that has to change and maybe start being more aware of what out bodies are saying. What scares me now, is that I can see myself heading down the path of falling into my old ways - family and school first - me last. I have to give that some thought but maybe as a society we have to give some thought? Any ideas, S

[harker]

I think my answer would probably be "All of the above". The questions you have raised seem to cover the different frameworks of knowledge, interest, equity and utility. I can relate to all of them. I guess, though, your point was to get people to think about which one is a 'driver' for their behaviour. So, if I had to choose: I would go with what I have knowledge of, which is "my cancer experinece". I can get passionate and desire equity in matters to do with cancer research, treatment, support, etc, but they are always going to be informed by my own knowledge. I am not a professional advocate and I could only act on what I have knowledge of at the time. I am not looking to be an advocate, although I might advocate. And I'm also aware that not everything can be fixed so there's likely to be better returns for some investments compared to others, etc, etc, etc...(insert standard economic rationalist argument here). So, Eddie, I'm picking answer 1. Did I win? Samex, my behaviour prior to diagnosis was as gender typical as yours, I guess. My wife kept saying you should have a check up and I kept avoiding it because I didn't want to know what I might have to know...typical blokey response to the situation. H

[Sailor]

Hi RoryA Yes Advocacy is what you say it is - but what are the areas that you decided to work in? Well there is the need issue, there is the equity issues and to be pragmatic there is also the opportunity. Let me illustrate: Equity - cancer survival is worse the further you are away from a metropolitan area. So work with state and federal governments to ensure that the rural cancer initiatives, including $560M in the last budget go to the areas where they will serve those with the greatest need. Work with other organisations to address the issue of transport and the appalling state of the various transport assistance schemes in each state (There was a Senate enquiry two years ago, none of the recommendations have been addressed!) Equity - the lower your socioeconomic status the lower your cancer survival - no one seems to be addressing this one. It does overlap with the above. Equity - If your come from an indigenous or culturally and linguistically diverse group, your survival will be worse. We know all of the above - what are we doing about it? Need - if you go to the Cancer Australia Website and download the document "Cancer research in Australia: An overview of cancer research projects and research programs in Australia 2003 to 2005" (http://www.canceraustralia.gov.au/media/14905/national_audit_of_cancer_research_projects_and_research_programs_final_report.pdf), Have a look at the tables on page 30 and following. They plot, incidence, mortality and Person Life Years Lost to Age 75 for a range of cancers, and the research spend on each cancer - breast, leukaemina and ovarian do well on all counts - Lung, Bowel do badly yet they are the top two cancers on all scales. - what are we doing about that. (I am going to be politically incorrect and say of you read or listened to the media you would think that the only females get cancer and the only cancer they get is breast cancer!) What are we doing to correct he bias in the media - I am quite cynical about this - colorectal and lung cancer aren't sexy so they don't get the attention. Opportunity - if an opportunity presents itself the go for it. A good example is the campaign ran two years ago about allowing terminally ill to access there superannuation without a taxation penalty. A lawyer doing pro-bono work with people affected by cancer approached an advocacy organisation about this. The organisation ran with it and with the help of other organisations got the law changed. Just a few ideas, Cheers Sailor I am not on this site to be an advocate - so no quotes! BTW these are national issues!!

[#9]

Hi everyone, Samex I understand totally what you are talking about. It's something I'm guilty of. Even now after everything Ive been through I still put my family first. I guess most Mums do. I think finding the right balance is the key. My children were 11 and 1 when I was having surgery and chemo, I used to get up to a 1 year old who refused to sleep during the night after an 8 hour session of chemo and a zap of radiation thrown into the mix. Im sure any parent with young children can understand. The thing I found hard was to let some things go and accept some help from time to time. I wanted to think that I could do it all, all of the time. I can see now though that looking after myself is also in a round about way, looking after the kids. They need me to be around for them and to be at my best. So the only thing I can suggest is that what you are saying is quite normal. In my last post on here I spoke of Men not taking caring of themselves the best way they can. And I guess we as women do the same just in a different way. Hope that helps, Im not at my best on a Sunday morning!

[craftyone]

Hi all, as a survivor of colorectal cancer, this is a subject very close to my heart. Not only have I had bowel cancer, but it has been a part of my history for over 30 years. Yes, I have a gene that pre-disposed me to bowel cancer and even though I had an operation in my late twenties and had been checked every 6 months until 2000, I still managed to get cancer - 2000 was the year that I was diagnosed with bowel cancer. My mother died from bowel cancer, I had two brothers, one who died from complications with our type of gene and another one who survived bowel cancer only to die from esophagus cancer, unrelated to our familial cancer. My other sibling, sister has the gene and 4 out of 5 of mum's grandchildren have the gene. I only found out that I had cancer when I thought that I wasn't as fit as I should have when working in the garden, I was going to the gym at that stage so I was quite fit. I am the lucky one in that I have survived and it probably wasn't quite the devestating statement that other people receive. I too am disappointed at the lack of awareness of how prevelant bowel cancer is, but I have a feeling that it is not so much the non-sexy image, but the "dirty" image that it conjures up. There must be more media people out there who have been diagnosed with bowel cancer, but even now it is hard to get the media "excited" about the subject. Let's all get behind the cause to highlight the deficiency of awareness about bowel cancer (and yes lung cancer, although there is more reference to lung cancer than bowel cancer). I think that it will be an uphill struggle but very worthwhile. I hope that that was not too long for my first statement. Craftyone