The music in my heart I bore,
long after it was heard no more

From The Solitary Reaper
by William Wordsworth.
Chosen by Martine’s family.

Some of the following strategies were things that women had worked out for themselves over time, some came from links with other women with advanced cancer, and some were a modification of what women had found in resources about early cancer:

a) Honesty:
Honesty and trust were big issues. The women all felt that if they weren’t honest, even if things were difficult, children would be more stressed and uncertain. While tempting to downplay things, secrets were seen as making things more frightening for children because they guessed about things, often imagining them to be worse than they really were.

b) Staging information:
Especially for younger children, women were aware that their children’s needs for information changed over time. For very young children, talking about something that might happen many months away was not helpful. Women said that they needed to update things for their children if their health changed, and also to give them information in amounts they could understand.

c) Routine:
Having some structure and routine was seen as very important, as it made children feel safer, and more grounded. Women felt that it gave the children some confidence about coping with life, although routine was often difficult because of changing treatments.

d) Involvement of children in treatment:
The attitude of women about this was remarkably consistent. Women felt that excluding children made it more likely that they would imagine the worst. Although it can be upsetting, it is also about treating them with respect and allowing them to see what is happening.

e) Getting support for yourself:
Women found it helpful to connect with others facing advanced cancer, often through a support group. Generally this was seen as a very precious thing, but it could also be painful if other women in the group became sick. Several women felt that over the years they had tended to downplay distress or concerns so that others around them wouldn’t be upset, but it could be quite liberating to admit that things were tough and allow people to be supportive. The big message from women was that you don’t have to be positive to protect other people.

f) Accepting help:
In addition to the need for emotional support, practical assistance was an important issue. Most women felt that getting help didn’t mean that they were less independent, in fact it helped them feel more in control about where they spent their energy, especially if they weren’t well.

g) Telling the school:
Not all of the children were of school-age. The mothers of school-aged children felt that if the school was supportive that would make things easier for their child. Sometimes the school counsellor was able to offer support for a child. The women also said how important it was to check on what other children at school were saying, so that they could correct mis-information.

The full reference which gives more details about the interviews is: Turner J, Clavarino A, Yates P, Hargraves M, Connors V, Hausmann, S. Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care 2007;5:135-145.

Further information about Advanced Health Directives, also known as A Living Will, can be found on the NBOCC site at this link

http://nbocc.org.au/breast-cancer/living-with-breast-cancer/putting-your-affairs-in-order#AHD

Information about advanced health directives and enduring powers of attorney in Queensland can be found here.

http://www.justice.qld.gov.au/justice-services/guardianship/making-health-care-decisions/advance-health-directives

Information for other states can be found by doing an internet search.

“The other phrase I have difficulty with is “Survivor”.  I personally have never referred to myself as a “Survivor”.  If I ever feel the need to label myself or put myself in a category, I prefer to say that I am living my life with cancer and trying to make the most of each day. The word “Survivor” conjures up visions of someone reaching the top of Mt Everest having pushed aside all the pitfalls that the mountain has thrown at you and once you reach that pinnacle you have survived the climb and can’t be touched again by anything that may cause you to fall into the abyss.  Life is not like that.”

The word, “Survivor” also means someone who has survived an arduous journey, like Jessica Watson, who sailed solo around the world.  Her journey was completed but her life went on and that journey was finished.  The journey of living life with cancer continues on and on with many bumps in the road.  Some may never have a recurrence of the cancer but even so, the blood tests, scans, doctors’ appointments, sweaty palms and anxiety will continue.

The women  are welcoming and pleased when new members join, and  offer support and encouragement.    The best time to join is early in the diagnosis, when the initial turmoil has settled and there is time to reflect and think about ‘what now?’,  when there is time to get to know the others in the group, and time to think about how you want to live the life you have.

Most women who join want to know how  other women  deal with the illness.  How do other women manage this new landscape they find themselves hurled into,  what do they do about talking with their doctors and remembering the information they are given, how many times do they have tests and what tests do they have?  What tips have they  had from the nurses who have  treated them about managing the side effects of chemotherapy, or the debilitating nature of pain, and the myriad other new and difficult experiences this diagnosis throws into their lives.   Some of the women  have been members for many years, and can offer suggestions not only from how they themselves have managed, but also from the pool of information in the group,  a heritage from all the courageous women who have been members over the ten years we have been running.

The group offers a space to talk  without having to worry about overloading families.   Women are fearful about burdening their partners and children, they often feel burdensome enough already.  Here they can discuss ways to share with their families, and  bridge the gap  this fear can create.  This can mitigate the need to keep a brave face, which can have the unintended effect of distancing those whose support and comfort is most needed.

Fears of death and dying are topics not generally spoken about with ease and often need practice to address.   Not many of us are  able to face the fact we will die, and it is relieving to women to have a space where this is able to be openly discussed, often with laughter and black humour.   We all have to die, and until we are faced with the inevitability of our own deaths we think it is something that will happen when we are ready, when we are old and have done all we think we would like to do, and we are now willing to say, ‘yes, now I am prepared to die’.  But this fantasy is shattered with the diagnosis, so the need to think about death becomes urgent and confronting.

At times this can be a difficult group to be part of, and to run.  Women do die in this group, and it is sad and painful to lose someone we have all got to know and admire.  But the women in the group look after one another and are supportive of one another, and they are thoughtful and supportive of us too, and grateful for what we offer. They  give generously of themselves in a variety of ways, and are inspirational.  We all learn from one another, about the preciousness of life, about which aspects of death are the ones that frighten us,  what can be thought about and addressed, and which areas we have  no control over at all.    Is it the idea of dying alone, or in pain, or with things undone that we want to have done?  Are there people we want to speak to before we die, are there things we have not taught our children, have we told our partners and children enough that we love them, and have they had the opportunity to tell us, sufficient that we all feel heard? Do I want to travel before I die, or stay at home with family and friends?  Death is a part of life.  We each walk through life towards death in our own way.  What we try to offer in this group is the opportunity for each woman to think about what her life and her death is for her,  what she wants her particular walk to look like, and how to accomplish that.

Pia Hirsch
Mary O’Brien

July 2010.

Lyn wrote her own funeral eulogy, which her family have generously shared with us, and this is what she said about the group:

“I was given the details of a group for women with advanced breast cancer. I felt I was just dying and would get a group that would help me with funeral arrangements but No. They shared with me their overseas trips, their chemo, their ups and downs. It gave me immense strength. It gave me this wonderful calm that my sisters had shared. We’d ring in every week, we called ourselves ‘kickarse women’. We travelled the world, changed laws and wrote books. I thank god for my group, they have made me strong during the fight and calm at the end. So many of us will find ourselves faced with cancer during our lives and I cannot stress enough the importance of support and talking to people who are facing the exact same battle as you are. Much love and more power to the wonderful ‘kickarse women’ ”.

Lyn was a gifted writer, and we will be putting more of her work on the site in the near future.

Introduction

Many people who have been diagnosed with secondary or advanced cancer need to stop work, either permanently or for a period of time. Sometimes people stop work to allow for treatment and other times it is because they can no longer cope with full-time work. If someone stops work because of an illness they are often entitled to be paid insurance benefits through their superannuation funds. Also, if someone has been diagnosed with a terminal illness they can access their superannuation account balance even though they are under the preservation age (up to 60).

Tax free super

With effect from 1 July 2007, people with terminal medical conditions can access all their superannuation tax free, regardless of their age or whether they are still working.
The change means that people who are diagnosed as having less than twelve months to live can get immediate access to their superannuation to relieve financial stress without having to stop work and without losing a large slice of the payment in tax.

If your doctor has agreed to sign the form indicating you have less than 12 months to live, and you in fact live for a longer period of time, you do not have to pay the insured benefit back to the superannuation fund.  
It is important to note that not all funds are the same.  It is worth while to take the time to speak to an expert to inquire about the best way to access the funds from your superannuation company.

Extra insurance benefits

Most (but not all) super funds also include extra benefits for death and disability.  They are usually insurance benefits which are paid on top of your account balance in the superannuation fund.

The disability benefits might be large lump sums or a monthly pension.  The death benefits are usually lump sums which can be large six-figure amounts.  Some super funds also include terminal illness insurance benefits which are usually the payment of the insured death benefit if you are diagnosed with a terminal illness.

Insurance benefits are funded by insurance premiums deducted from superannuation contributions or from the account balance.  It is possible to have multiple disability or death claims. Many people have a number of different superannuation accounts and it is possible in many cases to have a claim on more than one of the policies even if you have not paid any contributions in to the fund for years.  

Warning!

Whilst the changes to the superannuation laws are welcome, early access to super can mean losing very valuable death and disability insurance benefits.

If you take all or most of your super account balance, you will usually lose your insurance cover for death and disability benefits.

You must be very careful before deciding to access your super if you have a terminal illness.  You may need to keep some money in your super fund or take up an insurance continuation option to keep the insurance cover going so that if you get too sick to work, or die, insurance benefits can still be claimed.

If you take out your super when you are still working you may lose valuable insurance. If you have a pre-existing illness, you may then find it hard to obtain any new insurance cover.
If you are paid a TPD lump sum, you may lose your death insurance cover, even if it is worth more.

How to claim

To claim a Total & Permanent Disability (TPD) benefit from a superannuation fund, the fund will need to complete a form and so will your doctor. The superannuation fund may also require you to see one or two of their doctors.
To be successful in a TPD claim, you usually have to show that you are not able to do your job or a different job that is within your education, training and experience.

If your illness means that you have to stop work, you should get advice immediately before making any decisions.
To claim a Terminal Illness benefit you will need to get medical certificates from two doctors, one of which must be a specialist, stating that you suffer from an illness or injury that is likely to result in death within twelve months.
You then contact your super fund to apply for the pay-out and send in the medical certificates.  You may have to fill in an application form.

The super fund should make a decision quickly.  If no decision is made within approximately one month or if the claim is rejected, you can lodge a complaint.   

Free superannuation and insurance advice service
It is really important to get advice about the death and disability benefits in your super funds before you access your superannuation.

Call Maurice Blackburn on 1800 196 050 for free legal advice.

Date of Birth – 19/10/1984

Journey – My first diagnosis of Breast Cancer was 1st May 08. Surgery in June, and a scan discovering mets in liver and bones in July (post op). Chemo began 1st Aug after a short radiation of pelvis to prevent any pain, although I had none.

Brain Met removal 2009 on the exact date (1 year anniversary) of the original Mastectomy (11/6/09). I am about to have a third brain met removal in the same place and also have spread to lung which has no current effects. I am HR2+ only and about to turn 26. Don’t assume or blame BRCA genes – none here!!

I was diagnosed when I was 23, when I was about to move up in my dream (enjoyable) career. Devastated once secondary cancer was diagnosed, as had been happy/hoping to remove the breast, have chemo and get back to work/life 6 months later. Once secondaries appeared in the July scan the devastation was mainly about my career, independence and moving back to my country town from south east Queensland for the purpose of “you know what this means, spend time with family”. I soon became very happy and understood the whole life (regardless of health and bad luck) goodness to be near my immediate family.

I handled losing my hair but missed my cleavage and gave away my now un-wearable ‘nice’ clothes – telling myself less/covering (cleavage) is more sexy and more classy …but living in a hot town it was/can be hard not to miss light singlets and not have to worry about bending forward. Wigs were also too hot – though have began for 1st time this winter to move from the patient look and hide. The little things.

Regarding sex and romances:
I was amused (probably nervousness) when thinking about and imagining dating someone, when you have to explain you are missing a breast. When do you do this? How do you say this? I became happy when I thought early on, before I knew I had secondaries, but have one breast, that my next lover would have to be a true lover. One who values my soul/ myself over a female physical body (superficial taking into account attraction factor still) and who would love me for who I truly was. Who is not obsessed with body and looks when partnering. We deserve this and to me I had to make myself feel better about mastectomy – being a tool to find TRUE love/soulmate.

Once I knew I had secondary cancer I instantly chose to be “off the market” – not wanting to break a heart with the “medical” fate of death – personal choice. Personally, I would prefer their happiness and that they fell in love with someone for life. Yes I know about car crashes…but I did laugh instead of cry (off market anyway) about the goodness of not wasting my time on potential lovers, ‘body, body, looks’ men.

It took me well over a year to get over my career dream and get used to not working. This happened after I had to permanently stop a short government contract due to the 1st brain progression in May 09 – thus making me unreliable for Employers. Also interesting is the fact of others of my generation’s (Y) lives were starting (not yet married with babies) so when I was at home everyone was/is at work. Now I stick it in their faces (as a joke) that they are still at work whilst complaining to me about their day. Quality over quantity – being a 25 year old retiree!! Now very much enjoy and value life – apart from needles of course.

I did have a sneaky mets at least a year and half after diagnosis where I was comfortable as I didn’t feel sick or in pain. I now do have good pain management but am comfortable which is great. I have my independence back (thanks mum), have gone travelling and am enjoying being a retiree in clubs, house/garden beautifying, peacefulness and my childhood loves of different creativities – which yes cost money and is why I haven’t done a lot of.. but that can make you more creative. Now comfortable not working and happily independent from family financially (thanks to great previous employers Custom Super Fund) however I certainly understand and went through financial stress and breaking living.

I cry whenever I want to too.

In Dec 2009 I attended a Gawler Foundation www.gawler.org 10 day stay which I very much enjoyed and found helpful, psychologically more than physically for myself. I have learnt how to demand and stick up for myself in hospitals when required – although very thankful to the team looking after me. However when first diagnosed I did experience timing problems of “a few weeks won’t make a difference” and could tell other stories…

The dawning of a brand new day as out of bed I climb.
I’ve found since I got breast cancer, I’m pretty short of time.
I’d love to accept invites, but my friends don’t have a clue
I’m just so bloody busy with the things I have to do.

First task I’m in the kitchen with my “new best friend” the juicer
I can feel myself get better (I can feel my bowels get looser)
All organic beets and oranges, five kilograms a day
Without a frown I slurp it down and then I’m on my way

Monday is lymphatic drainage, with a deep massage to follow
Then I touch base with my naturopath for hints on what to swallow
On Tuesdays I have counselling then full 3 hours of reiki
A phone in with some ladies leaves my schedule somewhat shaky

I don’t eat chook or dairy, anything that had a “Mum”
But once a week a man comes round, sticks hoses up my bum.
I meditate 3 hours a day in candle lit seclusion
It’s not so hard to find the time, that’s just a false elusion.

Twice monthly I’m rebirthing, the feeling’s so unreal.
My Mum (who doesn’t understand) says her stitches never heal.
You’ll find me on a Friday with a group so dear and kind
And we tweeze out old forgotten hurts round campfires in our mind.

I don’t drink tea or coffee, alcohol never a drop.
I’ll list the things I eat and drink. Fruit, vegetables full stop.
It’s a very hectic schedule and for wellness that’s the fee.
But if you smell burning martyr, well OK, I guess it’s me.

Deep in my dreams I lunch with friends and time does not construe.
I order steak and chips and gin and 20 Winfield blue.

Women who join the group are asked to complete a comprehensive set of questionnaires, asking them about their recent experience of living with secondary breast cancer, when they first join and every six months thereafter. To read more about the results, click here.