The Age Article "In The Shadows" March 26, 2017

Hi,

Attached an article that appeared in Sunday 26 March 2017 Age which resonated with me and got me thinking. Hereunder are my comments I sent to Fairfax in response to the article written by Julie Power "In the Shadows" attached.

I totally empathise with the people interviewed. All the comments resonated with me. However, I wish to expand on what Aranda said “It is a growing dilemma. You have physical limitations, the emotional overlay, the changes to your social and other circumstances, and the financial impact; (it) is just something we don’t have a clear handle on”.

This is no longer a personal battle! It’s one that now affects families and communities because more and more people living with cancer are chronic, not dying. Our society needs to acknowledge this phenomena, and start a conversation. Technology is keeping us alive and well, so the challenge is how to keep us involved and connected and not a drain on society.

It’s unacceptable for people to be tipped into poverty when they can work. Discrimination is alive and well. My employer was very supportive whilst I had “Early Breast Cancer” but when it wasn’t going away, their attitude changed. I was still a very capable and highly regarded employee but I no longer fitted into the “traditional employment” model. A legal framework outlining the rights and responsibilities that apply when an employee or potential employee is affected by cancer must be communicated and a need for practical solutions to common problems is needed.

Currently cancer is considered a disability under anti-discrimination laws, which means that reasonable adjustments are made so people living with cancer are not disadvantaged at work. I don’t believe this is understood by employers.

I am not in poverty yet but because I am still living, unable to earn an income with around $3,000 out of pocket medical costs every year, it will happen. Like others I cashed in my superannuation to reduce our debt. To try and make ends meet, my husband who is 63 is working 6 days a week and very long hours to try and make ends meet.

I would like to see a flexible workforce for people who are living well with cancer who can work are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension.

Today I am living well but as I am now nearly 60, I’m invisible. It breaks my heart to see how my disease has and is affecting my family.

My ‘normal’ has changed because of my disease but I don’t let my life be dictated by it. I am still articulate and functioning. I have a good quality of life and want to keep it that way. I am still a strong contributor to my immediate and extended family. When you are diagnosed with Advanced Breast Cancer you think you are going to die in a matter of months but in my case, you can live with cancer. I’m into Year 10!

I am dealing with cancer and my medical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are many areas that needs to catch up so let’s start the conversation to get decision makers listening and make changes for the better and for the future.

Karen Cowley

South Morang, Victoria

Cosette
Member
9 years ago
If you're having trouble with the PDF, the story that appeared in the paper and that's in the attached PDF is also online under a different headline, 'So what if my results say I'm doing better? I'm still dying – just not right now'. It's the same story that @iserbrown previously shared. Great letter, @"Karen Cowley".
Karen_C1
Member
9 years ago

Brenda5 said:

My super is less than $1000 and goes down in fees and taxes by $50 per year and yet they still will not let me have it even though I have not earned a wage in 27 years. I am only 54.

Hi Brenda have reposted article which should work. I would be pissed off with your situation. That is why superannuation is not the panacea. It should not be the only possible income stream for people living with cancer. 54 is way too young to be faced with this dilemma. It is so stressful and needs to be remedied.
Take care
Karen
Karen_C1
Member
9 years ago
Hi everyone,
Brenda5 advised that attachment being the article corrupted. Here tis if you want to read it.
Afraser thanks for sharing your commentsl
And I agree with Zoffiel, there is a lot of window dressing (I call it lip service) about diversity and disability.
Because its hard doesn't mean as a group we cannot at least get heard. That's the beauty of being part of BCNA. I as a Consumer Representative, am only too pleased to assist BCNA in any of their initiatives. This organisation is a force to be reckoned with.
Afraser
Member
9 years ago
Woops lost the end of that comment - I'll keep working on the good results in the hope of some general benefits then!!
Afraser
Member
9 years ago
Thanks for that
Zoffiel
Member
9 years ago
Never feel guilty about being fortunate, @Afraser. It's the good luck, fair treatment and good result stories that keep us all going.
Afraser
Member
9 years ago
I feel so unfairly fortunate when I read your stories. I had a supportive work place (bottom to top), side effects were not too bad except one, and the bad time with that was quite limited. I worked through, and am still working at 71. My other plus was that my age I could have retired (if absolutely necessary) at any time post diagnosis with my super intact. I agree with Share - work is a complex thing. It provides financial rewards but it's also a lot about who we are. I agree about quality over quantity, but this raises bloody hard decisions. This is a whole big conversation that needs to be had - I'll join in with anyone who knows where it may be best directed. Whatever mysteries remain about how cancer starts, we are unquestionably getting better at treating it. People live longer, with or without cancer and want to continue a normal life as far as possible. I fear Zoffiel is right - too much window dressing about diversity and disability.
iserbrown
Member
9 years ago
Crumbs! I hear you. It would seem if you have savings you have to look after yourself. I've been living off savings that are diminishing rapidly. I have one advantage that has come into play. Transition to retirement which allows me a payment of 4% of my super. It all helps! It's a so and so. We find ourselves hamstrung on the income front because BC came knocking!
Zoffiel
Member
9 years ago
I was made redundant only weeks before my recurrence was diagnosed, that was in September and I still have 6 weeks radiotherapy in front of me. I have not been eligible for any government support because I had some money. Those funds will be pretty much exhausted by the time I can claim anything in July. Then I will have to register for unemployment benefits--pretty much the minimum benefit that is paid to anyone over 21. I'll have to navigate that for a coupe of years before I can claim disability if I don't secure a job.
My chances of getting back into the workforce in the near future are, I'd reckon, about zero. I've written enough diversity and equal opportunity policies in my time to know they are window dressing at best for the majority of businesses. I'm not well enough--and probably never will be--to do the physical jobs which seem to dominate the limited market here and can't see how I can compete for the sort of work I am qualified and able to do.
I can't get at my limited super because I'm not yet classed as palliative. Phffft.
So, as my disease progresses and my ability to support myself recedes into the distance my anxiety level keeps rising. A couple more years of pain and poverty and dealing with a punitive system that views me as a burden on one hand while encouraging me to take treatments to prolong my life on the other and I will be interested in checking out. Unless the cancer takes care of that problem first.
I know that sounds bitter and defeatist, but it's quality above quantity for me, and ultimately it's my life and my choice.
Scooper
Member
9 years ago
Dear Karen.
Your words written above have gone straight to my heart and I sit here with tears. I was diagnosed stage 4 straight out of the part in August 2015. I have been of full sick pay since then and this stopped Monday. I am currently going through the hoops of receiving a disability pension through my superannuation. I work for the State Government and at no stage has my employer said - hey Sandra we would love to have you back two days a week or what would suit you. Out of sight out of mind. I am lucky and have picked up a casual job two days a week next term. I am so very happy about that.

I feel invisible too. I have a great family network and some amazing friends but am feeling alone in this battle. I am off to have a pet scan next week as I have some enlarged nodes. I am in great hands with my medical team.

I currently have no income but have saved like hell over the past 18 months. I am lucky that my husband is able to support us at this stage.

Thank you for your article and what you have written above. Keep well and take care

Sandra xxx