Game Changers Living with Advanced Breast Cancer
Hi, my name is
Karen, I am 61 years old, married and mother of 2 adult boys and have lived
with HER2 Advanced Breast Cancer for 13 years. As we are acknowledging
people with Advanced Breast Cancer on the 13th of this month, I thought I'd put
down some thoughts.
Here under are my
musings with regards to events during my journey that have had a profound
effect on my emotional being and the way I live. I hope what I have said
resonates with some of you living with Advanced Breast Cancer. Sometimes
we find it hard to express our game changes and I hope you find what I have
written interesting.
1.
Being diagnosed in 2007
with Metastatic bone disease - mortality really kicks in!
I’d thought I was going to
die in a matter of months. I asked my
doctors what my life expectancy would
be. Based on the average, I was told 4
years and I already had one! My life was now
in a holding pattern as I was dictated by a new entity “cancer”.
Despite this news, I was determined to keep life as
normal as possible for self preservation and the well being of my two young
adult boys and husband and bills had to be paid. I worked for 6 years living with cancer. There
were periods during those years when I had to draw on my annual leave, sick
leave and long service leave due to surgery, radiotherapy and regular
chemotherapy. Despite my chronic
illness, I was nonetheless still able execute my position well, and those not
aware of my personal health challenge were none the wiser. However, in the end, it did become too hard
to work full time as years of chemotherapy and the disease not being stable had
debilitated my body and energy.
There were many times when I had to rise above my
limitations and living with permanent fatigue made me irritable which I vented
at home. I was not always nice to be
around.
On a positive side, my disease has made me take
nothing for granted and I have become more tolerant of people and much less
judgmental. I now stop and smell the
roses and give time to myself. I have a
deeper connection with my family and friends that I hold dearly in my heart and
feel blessed to have them.
2.
Giving up work.
I gave up work prematurely because my employer agreed for
me to go part-time but this did not materialise, forcing me to take my Income
Insurance. At that time I advised my
company in writing I was taking unpaid sick leave and believed this to be so as
I was not told otherwise. I kept in
contact with my immediate boss however when I paid a visit to Human Resources
some 21 months after I left work to discuss my return, I was told I had been struck
off the books. The explanation given was
“company policy”. This was not a proper
explanation, nor grounds for dismissal. No-one bothered to advise me that my services
were no longer required and I had not resigned. Due to my employer’s actions, despite being
a skilled person, competent in business and marketing, my continuity in the
workforce had been broken. Given my age
and illness, finding new employment has proved problematic.
This was extremely upsetting to me. I worked in this organisation for 22 years. I had a career which I identified as a big
part of me. To have this taken away was
mortifying and has taken me a long time to accept that I am no longer in the
workforce.
Through my own experience and talking to fellow cancer
survivors, I am aware problems are not uncommon where people with cancer are
encouraged to leave their jobs, or having their terms and conditions altered,
to their detriment, upon their return. In
my case I got lip service and was dismissed surreptitiously.
Currently cancer is considered to be 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.
3.
Cashing in my
superannuation
As I was no longer working and had
terminal cancer, I cashed in my superannuation because as a family we had to
reduce our household debt in order to live off one wage, pay medical and other
bills. When I cashed in I was
diagnosed with metastatic brain disease and indications were that I only had months to live. Now I have lived on for another 5
years. What this means, my husband and
I no longer have a retirement plan and will have to rely on pensions that has
already started with me being on a disability pension. I was the main income earner so our standard
of living has dropped and keeps doing so whilst I keep living. Living with cancer brings everything
forward making it much harder to make ends meet whilst living and coping with a
disease and its associated costs.
To access my income insurance then my
superannuation, entailed extensive paperwork that had to be completed by my
oncologist, GP and myself. As I have terminal cancer, my applications
were accepted but the process was arduous and I can understand it being
overwhelming for some. To add salt to
the wound, in the early days of receiving my income insurance, I had to chase
the insurance company every month with monthly telephone interviews regarding
my health. Not nice when you have an
incurable disease and are asked to justify why you qualify to get your next
payment!
4.
Being diagnosed with
metastatic brain disease.
I was terrified that I was going to die very soon. I couldn’t believe it, I had no symptoms. The lesions were picked on my regular
scans. My mortality was very much front
of mind and I was deeply concerned how this diagnosis was going to affect my
quality of life and how quickly I would deteriorate. I had three tumours in my brain as well as
one in my spinal cord. The one in the
spinal cord was troublesome as I already had extensive radiotherapy on my neck
due to bone mets and it was touch and go if they would give me another dose to
treat this new threat which could render me a quadriplegic. Very dark times. Radiotherapy eradicated this threat and has
disappeared (a miracle).
5.
Acceptance that cancer
is a part of me.
Cancer is my reality which I now embrace as part of me
and consequently I try to make the most of every day and moment. It
has taken a long time to accept that Cancer is part of my body. When I was first diagnosed, it was a foreign
entity that had to be conquered.
Sure, I am now
experiencing some long term problems such as nerve damage in the form of
neuropathy in feet and hands which affects my mobility due to the disease and years
of chemotherapy, radiotherapy and surgery has affected my balance, but for the
most part, I take it in my stride. My
normal is changing because of my physical limitations but I have a good quality
of life.
I am living with advanced Breast Cancer, however
incurable does not mean untreatable. 5
years ago treatment options were drying up until Kadcyla became available. I have had 70 doses and I am still
here! New technology brings hope.
6.
Going on a disability
pension.
I am now on a disability pension, which
doesn’t sit easy with me. I have always been independent, I have exhausted my
own personal avenues for income to pay the bills, and a pension was my last
option.
Once I went on the pension and my health
improved I sought part-time work through employment agencies that place people
on a Disability Support Pension. I
soon discovered that although the government pigeon hole people living well
with cancer as Disability Pensioners, they are discriminated against because
overtly they appear normal. In my case
I am skilled and articulate and found they are either not set up or aren’t
interested in people like myself. Naively
I thought this avenue of employment would work as having cancer, one is not
sure what is around the corner and this system would be able to accommodate any
changes. I was wrong.
How I feel about this, I am now 61 and invisible. It’s had a profound effect on my self-worth
been as I have not been able to contribute to my family
financially. Those living well with
cancer should be encouraged to work and be part of mainstream society. It’s a win/win for the people living with
cancer and their families and the economy.
7.
Adjusting to early
retirement
For me this is a new
realisation. I am now not so angry that
I cannot work and have become quite the domestic queen. Mind you I don’t find it fulfilling but at
least its filling my days. Fortunately,
I was well enough to do a bit of travelling with my husband in 2014. I am not complaining, but it’s probably our
one and only opportunity. My husband
works very hard but is unable to earn enough to pay our bills. Our quality of living has dropped and will
continue to do so. We have cut down
our debts as best we could but now find we will need to go back into debt due
to cost of living. Not an ideal
prospect.
8.
Financial Impact having
ABC
Having lived with ABC and having a husband who has his own health
challenges, our medical out-of-pockets have been significant, in the vicinity
of $55K which are over and above even with top medical cover. I have also paid $15,000 for a life saving
drug prior to it becoming available on the PBS.
We have now made the decision to downsize, to be close to a medical
precinct, shops and public transport. I
am not allowed to drive presently which has affected my independence
dramatically as nothing is walking distance from my home.
9. Side
affects from Long Term Treatment
Latest change in my health is due to
side effects from long term treatment.
My disease is mostly under control, but your body can only take so much.
In 2016, I had fractured in both
femurs due to a drug ironically was given to strengthen my bones but did the
opposite. This has been my “biggest”
health and lifestyle challenge. It took
12 months to get over. At times I was
bed ridden and in a wheelchair. Through
extensive rehab, physiotherapy and exercise physiology, I am back on both
feet. During that time, I sought
external help and quickly discovered there was a real disconnect for patients
and services on offer. This needs to
improve. I discovered pallative care which
did have services that could have helped, but I learnt about them too late. As I now have no income I resorted to
seeking out services available through my community centre and the Council. Quickly discovered you had to be “65” for the
council to help you even though I am on a disability pension. Had to pay for a cleaner myself.
18 months go I underwent brain
surgery to remove a 5cm cyst attached to necrotic tissue which is what remained
from a lesion that was treated through radio stereo surgery.
Another setback. This part and parcel of my existence. The outcome because of small visual
interruptions which are deemed seizures, I am not allowed to drive, taking away
my independence.
Having said this, I
do believe I have never lost myself.
“Cancer” has challenged who I am but through it there has been a lot of self-discovery
along the way. Some of it good some of
it bad. My circumstance has not allowed
me to forget “cancer”. Living with
cancer, you overcome one hurdle, feel good for a while, then it’s back again. Because of this, I have lost my personal sense
of safety and health.
I hope what I
have said resonates with some of you living with Advanced Breast Cancer. I decided to put pen to paper as sometimes
we find it hard to express our game changers and I think it’s helpful to open
up, break down emotional walls and realise you are not alone in dealing with these
changes. Advanced Breast Cancer
presents a myriad of challenges as everyone’s journey is different.
Bye for now.
Karen C
BCNA Consumer Representative
Living with Cancer for 13 Years
Comments
-
Thank you for writing things down so articulately. You and all the women living with ABC in spite of the challenges are amazing but I get so angry when those challenges shouldn't be there at all.1
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Hi Sister,
Hopefully in the future breast cancer will be a "cold". Wouldn't that be great.
Enjoy your day.
Karen C0 -
Hi Karen C
Thank you for your wonderful post. It has great insights and i really like your lessons learned approach and taking the time to provide the context of your decision making.
What I completely appreciate is you taking the time out to reflect and share your story with this forum. It is a story that I have found great comfort in. I was diagnosed with Metastatic disease in July 18 and while our individual diseases are different, the notion that you having been living with this mean disease for 13 years provides hope. It is clear that that this is not been without huge challenges but I am so grateful to read a story of ongoing living with cancer - I hope you keep kicking the can down the road for a long time!! best wishes for your current treatment .
kind regards and my thanks again
Alison
1 -
Hi Karen C Thank you for re-posting your post. I remember reading it a couple of years ago and feeling inspired . I needed to read it again , so that I realize that we are not alone as we go through this time . I have had metastic breast cancer now for almost 8 years and lately things have not been going so well. I never hear that favorite word ' stable " any more. I have also lost a couple of friends to breast cancer this year. I have my down days but also very greatful to still be here. I try each day to do something to show my appreciation, even if its just to make someone smile. It is good to hear from you. Hope everything goes well for you.2
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Hi Wendy sorry to hear that things are not great at the moment. Hope you get over this hurdle quickly. Keep on making someone smile. I too get a kick out of being kind.
Karen C
t0 -
Thanks arpie, Glad you liked my post. Hope you got something out of it. I know topics raised in this post resonates with a lot of us.
Take care.
Karen C1 -
Hi @Karen_C , although I don't have advanced breast cancer I can relate to a lot of your post as I had to give up work due to another disability a long time ago. I was lucky to land a casual job online a few years ago, and it means the world to me though I'm finding its not as disability friendly as it should be.
If you are under 65 and need help at home you could trying looking at the NDIS. If you go to the NDIS website you should be able to find out who your local LAC is, and even if your not eligible for the NDIS they will have a better idea of who can help you.
Good luck with it all
0 -
Hi Mira glad you find things that resonated with you in my post.
With regards to NDIS have put in a couple of submissions which had different approaches which were both rejected. I can't be bothered as NDIS. They still have a long way go to be a functional organisation and support people who have a disability no matter what the cause is. My experience, they say that because my disabilities are due to an illness, doesn't fit into their disability model.
I gather you have had a better experience than I have had.
Take care
Karen C1 -
Hi @Karen_C. Wow 13 years. I am 44 and was diagnosed with HER2 BC in 2016. Finished treatment November 2017, however was diagnosed with Brain METS in February 2018. I had surgery to remove 3 lesions and stereotactic radiation to fry the other 4. I then started on Kadcyla. What a wonderful drug.Each day I take as a gift and hope I am still here for many more years to come. I have two you boys aged 14 and 12 and have no other desire than to see them grow.Thankyou so much for sharing.
Mel xx3
