All fired up

[Sailor]

Dear PS I am sorry to hear of the passing of your father and thank you for your prayers. I am sorry to hear that his passing was apparently due to something going wrong. If it was in the public system, then all states have a procedure for investigating these things. If it was in the private system then things get a lot more complicated. I hope that you are able to lament the passing of your father. Best wishes Sailor But to every sailor comes time to drop anchor Haul in the sails and make the lines fast You deep-water dreamer your journey is over You’re safe in the harbour at last. Eric Bogle, Safe in the Harbour

[#2]

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.

[Jules2]

After some thought i have decided that what gets my goat is ... the plight of the country patient ... it is such a long hard road on top of all the other things we have to deal with in being diagnosed with cancer.

[Sailor]

Hi Jules2 Yes, the plight of the country patient is far more difficult. However, things are changing. Go to http://www.nemics.org.au/Display.aspx?tabid=2731 and you will see there, under the heading of Consumer Participation Strategy, three documents - a selection of stories and two reports on studies of people in rural and regional areas. These drove the CanNET project that did something to address these issues. As well the Federal Government has giving a priority to Regional and Rural cancer issues and in the last budget put in $560M to establish regional cancer centres. The criteria for these is at http://www.health.gov.au/internet/main/publishing.nsf/Content/HHF/ $file/Draft%20guiding%20principles%20-%2011%20Sept%202009%20to%20MO.pdf (sorry the url is too long to set up a link - you will have to enter it manually) and these are open for comment. You can help by commenting on these. We have a long way to go, but there are some practical things that you can do. Cheers Sailor Have you stood by the ocean on a diamond hard morning And felt the horizon stir deep in your soul? Eric Bogle, Safe in the Harbour

[Jules2]

Hiya Sailor ... Thanks so much for the links, i will look when i get a chance as am driving back up to perth again tomorrow. Only got home on sunday after last weeks episode le sigh! So will be next week by the time i actually get some head space to check things out. I have been asked to talk to the local rotary club here so that will be an opportunity to talk about cancer and what it entails. Hopefully, it will inspire them to help out more. They already do quite a lot of fundraising at the moment for research. Maybe feedback from a cancer patient might help them to stay energised. Thanks again and i will certainly check those links out. The thing that is getting to me at the moment is the travel on top of the chemo and then all the other appointments in between. Has meant that i have had to travel 200 kms up and back weekly at the moment and its very tiring. take care Julie

[JudyB]

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

[Versaillon]

Wanna know what really pisses me off? The lack of support for people under 40 who have cancer. My husband has bowel cancer, he's 31 and is a public servant. Due to his high income, my income and our assets, it pretty much puts us out of the running for many types of support. Not only do I work full time (and weird hours at that), I'm also running the household and being Rob's carer. I take him to his appointments, sit with him during chemo, clean the house and all that entails, care for our pets, work full time and do whatever needs doing. This week, I decided that it was becoming too much and if I continued, I'd end up rendering myself useless to Rob by running myself into the ground. So I did a bit of research, called our local council and enquired about getting some assistance with the house. I was told point blank that they would not help us because we weren't old or on a pension. When I asked where I could get some help, they told us they had no idea. I was stunned. So I called the Commonwealth Carelink Centre who gave me the numbers of a few places like Silver Circle and Benetas. Benetas is for aged care so strike that off our list. Silver Circle weren't all that interested in helping us and I found quite expensive - hard when you've got a mortgage, bills, debts etc. I called another place for home help who suggested we call a cleaning company, not a home help company. I even called Cancer Connect to see if they could help find someone who would assist us with no luck. So I called a cleaning company we once used and hired a cleaner to come in once a week for 2 hours. Just enough to ensure my house doesn't turn into a hell hole while I try to deal with everything else going on. Hopefully it doesn't strain our finances too much - afterall, we have rent, bills, debt, medication etc to pay for like so many others. I called Centrelink to enquire about getting the Carers Allowance. It's only 100 bucks or so a fortnight but would make all the difference to us - would pay for our cleaner. However on seeing the paperwork, I pretty much have to jump through hoops to even entertain applying for it. Given my husband is quite independant at the moment, I don't like my chances. By the end, I sat in tears at the total bullshit I had endured that morning. No one would help us. They just kept passing the buck to the next organisation. My husband is still quite independant right now, he's not on a pension and is trying to go back to work a little. Yet, many won't help us because we don't qualify, we aren't aged, my husband is still too independant or he's not terminal and we aren't on a pension. All I bloody wanted was a somewhat subsidised cleaner to clean for 2 hours a week to take the pressure off us and so we could spend time doing more important things, like being newlyweds.

[larn75]

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!!

[Sailor]

Hi Larn75, Mrs Elton and other carers who have problems with Centrelink There is an excellent publication called "Through the Maze" on the web from the Association for Children with Disabilities - it is very useful. Go to: www.acd.org.au/information/ttm.htm Don't give up, play distraught, helpless etc when you go into Centrelink - ask to see the Social worker, not the person at the desk. Another one to try is at most Medicare Offices there is now based a Centrelink person, they are there to deal with Seniors, pensions etc. What is found is that they absorb the "helpfullness" culture of Medicare, not the "unhelpfullness" culture of Centrelink. Ask to see them - you must be in Medicare a few times with claims etc, so just use the excuse that you were there and seeking some help. If you are in Victoria, the Cancer Council Victoria does have some funds available to assist with things like Utilities Bills - 'phone 131120 and talk to a cancer nurse if you are in financial straights. It doesn't matter that your husband appears independent - he has a diagnosis of cancer that is sufficient if you have to care for him - If you don;t get anywhere, go straight to your local federal MP and write to the Commonwealth Ombudsman. Earlier this year the Commonwealth Ombudsman put a report to parliament slamming Centrelink for their treatment of people affected by cancer. If the person you are caring for is really ill, then you are also eligible for a disability pension - you need a PhD in form filling - so ask the centrelink person to help you fill in the form - again go to the social worker. If you have been given a life expectancy of less than twelve months for the person you are caring for then you can access superannuation with no tax penalty - that legislation was passed by federal parliament in February last year. Again the Cancer Helpline 13 11 20 should be able to give you all this information. Also try Carer's Australia www.carersaustralia.com.au - they will also be able to assist with you getting from Centrelink what you are eligible for. It is a hard slog and not easy dealing with Centrelink and when you are so tired it seems just too much, but you need to hang in there. Regards Sailor O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer

[Versaillon]

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.