All fired up

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

H

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.

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

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

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_r...), 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!!

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

Hi everyone,

I work at CCNSW in the policy and advocacy unit. It is good to see so much discussion here.

I think you make a good point craftyone, my work brings me into contact with many patients and survivors and only a few times have I met someone who has, or had bowel cancer (actually I should clarify that I've only met a few people who have been comfortable , or willing to openly discussing it, I may have met others and not even known)

I'm encouraged by the response to the the current campaign, however, there's been around 12,400 sign up's nationally which shows that the bowel cancer issue is getting on the radar. Lets hope the energy continues to rise.......

Kelly

Hi Everyone,

What gets me fired up? I'll tell you. This may not sit well with alot but here are my main issues:-

a) The way medicine is practiced here. I can tell you there is a vast difference between the way cancer and other terminal illnesses are approached elsewhere. The medical profession and govt don't seem to be proactive about a) testing b) catching cancer in its early stages, c) providing aggressive treatments in a timely manner, d) educating the public on the importance of testing and the symptoms that they should be seeking professional advice on.

This is costing many lives in itself. I see other issues:-

b) The ratio of specialists/doctors to patients is shockingly inadequate, if your a public patient you are going to wait weeks, or even months and this can in quite a few cases be too late to take action in a timely matter.

c) lack of funding, focussing care on the young and deeming the elderly a lost cause.

d) but my biggest dissapointment and shock is the policies that seem to guide the looking after of the terminally ill and elderly in this country.

Palliative care is my final issue, and I can tell you not all facilities are the same, I have witnessed patients left soiled for hours, deprivation of food and liquids, because these patients are zonked on morphine and they have been left with cold trays and when not touched simply taken away.

Not only this but the legality of do not resusitate orders and the lack of education and information passed onto family members. I could go on and on.

But this is why I've decided to write a book, so others didn't find out like I did, and to talk to those that want to see a vast improvement in services, hope is no longer a word used in Palliative Care and this is in my opinion fundamentally wrong.

Dear Sailor,

Thank you for the response. I won't defend the health system here that's for sure. But I will say there are some fantastic doctors here, but few and far between in my experience. Yes we have different expectations and values when it comes to medical treatments. I'll leave that where it is.

But with regards to clinical trials for prostate cancer I can only tell you that trials for Provenge (not here), Aribaterone (came rather late to Australia). The FDA was tough on Provenge vaccine, but their most recent trials in the US have proved successful and I suspect this will be up for FDA approval in the not too distant future.

Here I quote:-

"Then we have denosumab, a new targeted therapy to stop bone loss, increased bone density and prevented spinal fractures in men receiving androgen-deprivation therapy for prostate cancer. The study was a Phase III trial supporting the application for approval from the Food and Drug Administration (FDA) filed by Amgen Inc., the primary sponsor of the NEJM report.

Since the PCF was founded in 1993, there has been important growth in the number of new drugs and clinical trials for prostate cancer. Sixteen years ago, there were no new drugs in the development pipeline and only two clinical trials in process; in 2008 there were more than 30 drugs in development and over 60 clinical trials in process. Abiraterone, ipilimumab, MDV3100 and provenge are among several other promising new drugs that were supported by PCF funding and are now either in clinical trials or awaiting FDA approval. Ipilimumab and provenge are both immunotherapeutics that have been shown to stimulate the body's own immune system to fight cancer."

One can only wonder when these developments will hit our shores, I know for a fact that Aribaterone commenced earlier this year in Australia after a couple of years in the USA. The sad thing is you won't see a possible Provenge trial here until mid to late next year if you're lucky.

On a side note, sorry that you are suffering from aggressive prostate cancer, my father passed away two weeks ago from a procedure that was a spinal block and I won't go into anymore details but it wasn't the cancer that killed him. But he was in the terminal phase. And I say a prayer for you that you won't go through what he went through. Despite our differences, I wasn't trying to piss you off, but share my experiences and points of view, I wish you the very best.

Thank you sailor. I have sent you a message and I hope you can now understand what I've been through.

You sound very well versed in whats happening with your particular cancer and please keep on top of what's happening, take every opportunity you can get. Continue to ask questions and there are so many new things on the horizon and I hope with all my heart that you will be one of the lucky ones to benefit from the advances.

My father never got this opportunity.

I have another slant on this. I have breast cancer, one of the 'sexy' cancers that gets an awful lot of attention. This is good for the obvious reasons, more fund raising, more money for research, people more aware etc. However, contrary to what people may believe, it is not just the men who don't go to the doctors when they should. I am one who puts off going. I would rather not deal with whatever the problem is. Hopefully it will go away if I ignore it. If I go now, it might get the ball rolling and that will be the end of me, etc., etc. Silly I know, and to those of you who are the opposite, I don't expect you to understand, just realise that there are people like that out there and there is no accounting for it.

Anyway, my point really is that I sit here, knowing I have cancer, knowing that it could kill me eventually, knowing that I have to go through some awful treatment in the hope that it won't. I am trying to relax and not worry too much yet everywhere I turn people are talking about breast cancer. It doesn't help that it is breast cancer awareness month. I watch tv and am told in the ad breaks that breast cancer is one of the biggest killers of women in Australia. Wooo hooo, thank you for that, just when I had managed to get it out of my mind for five minutes!

In all honesty, those ads are what helped me NOT go to the doctor. Surely there is a way of being aware without shoving it down our throats and using scare mongering tactics. I think these ads should be more generalised. There are so many different cancers out there and each of them are devastating to those that get them. It's not even just cancer, there are so many diseases out there and if we are truthful some of them are a lot more debilitating than some cancers.

Here's an idea. Why not push and advertise for better health. Encourage people to visit their doctors and have regular check ups. Once we are having regular check ups we can talk to our doctors on a more personal level. Get to know your doctor, get a good relationship going. Instead of going to a clinic and having a different doctor every three years when you get the flu and need a certificate, go regularly so that you feel more comfortable with them and are more inclined to tell them about something that is worrying you. I know that I eventually told my doctor of my concerns because I felt comfortable with her after I had been having more regular check ups.

Well, that's my rant. Sometimes advertising can be overkill and be detrimental to certain types of people.

Judy

We are in exactly the same boat and have now gone through all of our savings. I also have three children to run around, and all of their sports, music and singing lessons have had to stop. On top of that each of the kids are experiencing their own turmoils due to bowel cancer. Scary to have an uncertain future as an adult but mind blowing as a teen or 7 year old.
The forms from centrelink really told me nothing about whether I will be eligible for help after I have written the 5000 word essay they require (slight exaggeration I know, but only slight), and quite frankly I am finding it hard to find the time to do anything. Nights are spent going through bills robbing Peter to pay Paul, trying to tidy up while noone is underfoot and catching up on work I can't do during the day. I daydream about sleeping!! We have had 10 months of this and have atleast another 4 months to go. Somedays I just want to stay in bed and ignore it all, but I just don't have that luxury.
Frustrating! Very frustrating! So tired of having to say no to the kids so they other day I just thought stuff it and we all went to the drive-in. then I spent the next week wondering if that $40 should have gone on a bill.
I have a response ready now when I get the give me your money calls. I tell them they have been chosen to go into the draw for a great prize. This will be drawn each friday and I will be sure to let them know if the are the lucky winners. For some reason, they don't seem that happy about it. Some people hey!!

Oh I feel for you Larn. We don't have children (well my husband has a son from a previous relationship but he doesn't live with us) so we only have to worry about ourselves. I can't even imagine how it is trying to help children understand.

We saw Rob's oncologist the other day and I asked about the Centrelink Carers Allowance thingy (this is just a small payment, Carers Payment is the biggun that you get if you are a full time carer).

Forget it! His oncologist said to me that Rob basically had to be a vegetable (ie, needed help eating, toileting, dressing etc) and his cognitive functions affected before we were eligible for a measly $100 bucks a fortnight. Are they fricken serious?? If Rob was in that condition, I'd be his full time carer and give up my job. I was totally dumbfounded and all I can say is *&$^#@*&^$&*&*#. Rob's oncologist also said that it's impossible for those who are terminal with more than 6 months to live. If they have more than 6 months, Centrelink will not recognise that they need assistance so she always says they have less than 6 months to help her patients out. Can't even get a health care card to help subsidise Rob's medications that we must pay for every fortnight.

How utterly demoralising to keep asking for help and getting knocked back at every turn. I spoke to my mum the other day who cared for my grandfather during terminal lung cancer. Told her about what I'd experienced and she goes to me 'Oh yeah, if you're old or on a pension, you get all the support in the world, free of course. Everyone wants to help you. If you're not, you're screwed.'

So basically, if you're a hard working Aussie who has done the right thing but just had an unlucky break, the government doesn't even recognise that you might need help. How many people affected by cancer have had to stop working due to treatment and now are living near poverty as a result? We are lucky in that Rob is a public servant but I can only imagine other people who are worse off than us and the government refuses to help because they too aren't old or on a pension.

Hi Jo,

I haven't been on here for a long time. Haven't read your profile yet but just wanted to know how u got on with centrelink? I was diagnosed with terminal bowel ca in 2007 and like you was told I was ineligible for anything from centrelink as my husband was going to continue to work throughout my treatment.

i was later told that with a terminal diagnosis you are entitled to a disability support pernsion and pension card. I think the income cut off may be about $65,000 but don't quote me on that. You as a carer of someone who is "terminal" are entitled to the carer allowence which is non-means tested. The carer pension is means tested.
So for the 1st 12 months of my fight we got nothing, then a friend of mine pushed me to try again. I had palliative care help fill in forms. Because I was "terminal" they simply ticked terminal - 3 months to live and we have received it ever since.

I mean really, who knows when you are terminal how long we have, anything could happen in the mean time. Who are centrelink to play God and say you are only terminal if the Doctor thinks you have 3 months to live. We hear so often of people being given a few weeks to live and going on to live for another 12 months. I was given 6 months to live and that was 29 months ago! I'm not lying to centrelink, the tumors in my lungs could kill me at any point, I could get a lung infection and drop dead.....who knows, not me and even my docs are suprised at how well I am, so if you aren't already getting some assistance, get pall care to help out if you have access to them!

Cheers
mihalo