I’m Not Cancer but Cancer is a Part of Me

Karen_CKaren_C Member Posts: 46
edited December 2016 in Metastatic breast cancer
I have been living with cancer now for nearly 10 years. It would be stupid of me to say that cancer has not changed me over the years. My illness is terminal but treatable and I still have a very good quality of life. I now accept cancer as part of my being. It has certainly affected me physically and mentally. During my journey there have been 8 events that profoundly affected and changed me. 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.   

This year my intention was to take some of that back by undertaking gym work under the supervision of an exercise physiologist, which I enjoyed. Then was faced with another hurdle. Through long term use of bone density drugs, my femur shafts become brittle and fractured. This resulted in having femoral rods inserted in each femur. Following my operations, I refractured twice so this “hurdle” has lasted since May! Easily my biggest test living with cancer. None of this is character building, it tests your resilience. Thankfully I am turning the corner.  

Ok you may say oh poor Karen, but you always meet someone worse off than you. My gym sessions were at a Rehab facility where you see people severely traumatised. I admire their courage and determination to gain some mobility.   

Because of cancer I now have bucket loads of self-discovery, teaching me to be more tolerant, slow down, be unselfish and compassionate. I am still working on “me” time. I think this is difficult for women.

I have greater compassion for people facing illness and adversity, particularly those who do not have the same level of determination, positive attitude and fighting spirit which I seem to inherently have.

There is one aspect of my behavior which I’m not proud of. My life goal has always been to be gracious and seek the high road, but at times my actions prove that I am not quite there. Truthfully, I work hard to ensure that I don’t look like a cancer patient or inflict my predicament on those around me. After all, it’s no one’s fault that I have metastatic breast cancer.

At times I have made some pretty bad jokes about dying. I have often been flippant with my husband about my mortality not thinking how this affects him. I have jokingly talked about my mortality to my friends in a non-sensitive way. I now make a conscious effort to not do this. It upsets them. I read this quote somewhere and it resonates with me “You are not dying from cancer; you are living with it!” It’s so right, and I have embraced that sentiment. 

For many years I saw my career as being a big part of my identity. As my disease wasn’t going away, in the end I was treated differently which affected me emotionally and financially. What had been my normal lifestyle was turned up-side-down. Myself and my family had to adjust to this big change as I was the major income earner. This has and still does test our resilience.   

Technology is keeping us living well despite our underlying disease, yet we are finding we cannot work. 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.

Now I focus on my health and my mindset. I have been an excellent advocate for myself and have actively participated in the management of my treatment. I am a BCNA Consumer Representative and have enjoyed the assignments that have come my way.   

By nature, I am an optimistic person, I am very thankful for my blessings. I have two wonderful adult boys and a supportive husband, sister and extended family. I also have great mates that are a shining beacon. When you are faced with a terminal illness, its these relationships that are your focal point.   Bricks and mortar and material things have become irrelevant which have been replaced by experiences shared with family and friends.

I know it sounds clichéd, but I take nothing of granted and enjoy every day.

You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it.  Anyone that has cancer knows that life goes on and it’s up to you to go with it.

Karen Cowley
Cancer Lifer for 10 years

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Comments

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,594
    True that, don't waste time worrying about it. Excellent you have stopped being flippant to loved ones. You sound very well balanced, good on you. <3
  • PatouPatou Member Posts: 2
    Hi Karen, I am so glad I read your post. I have been a member since May 2016,but did not have the courage to comment on any of the posts, This is very inspirational, I have been diagnosed with metastatic breast cancer since February 2016 and this was my first diagnosis. I am known to be a happy person turning everything to jokes. Cancer has definitely changed my lifestyle, I am taking it very slow and try to accept whatever is thrown at me. I can so much relate to your post and admire your courage and patience. Big hugs
  • Karen_CKaren_C Member Posts: 46
    edited October 2016
    Hi Patou,
    I so glad you empathised with the story.  I hope that you are going ok.   If you wish to give me a call, please do.  Otherwise all the best.
    Karen 

  • ScorpionQueenScorpionQueen Picton NSWMember Posts: 750
    One would never think of cancer as teaching us anything, but it does! I wrote about it myself in one of my own blogs...it teaches you to view life from a different angle....to become more tolerant...accepting.....with all the twists and turns this disease takes you on, you somehow still get up and face each day...
    You have caught the curve balls and thrown them back....you're proof of how resillient we are...thankyou for sharing your story......sendiing you love and light for beautiful days <3
  • Karen_CKaren_C Member Posts: 46
    So glad you read it and obviously it resonates with you.   Sending you love and light for beautiful days right back at you   <3
  • NeNe Member Posts: 340
    Thank you for sharing your challenges and progress with us all Karen. I admire your resilience and strong spirit.  You are faced with what most of us fear most and you are a true inspiration.  I wish you peace and hope always in every circumstance.  Xxx
  • Karen_CKaren_C Member Posts: 46
    Thanks Ne and all the very best with your journey.   
    Karen
  • JanineGJanineG Melbourne (west)Member Posts: 73
    Thank you Karen xxo
  • ElaineGElaineG Member Posts: 50
    Hi Karen and hi to all the ladies who responded.
    Like Patou I was diagnosed earlier this yr- stage 2, Feb 17 and then stage 4, Feb 24.

    Like you, Karen I am keen to do some advocacy work and campaign.
    I love what they have done in the US re metavivor and the black march last Thurs and was disappointed that the media didn't cover International MBC awareness day .... mostly because they've been saturated with pink survivor stories.
    I am also keen to start a Facebook page and encourage ALL of us to raise more awareness in due course like the brave women have done in the US.... hope that doesn't sound too ambitious.
    I attended the MBC day last Thurs but would love to see many more of us.  I LOVE your story Karen as the very first question I asked - was so How Long?  My brain immediately thought of Jane McGrath, Belinda Emmet and another family friend.  And of course more recently Rebecca Wilson.  But as we all know, its  not until we build up and consolidate our own understanding of MBC that we can feel relatively confident in our ongoing management - but that again, is a function of the day and time!  And of course there are SO many variables in the mix.
    I'm relatively young - 51 with any 11 yr old boy and 9 yr old girl, single and have just completed a PhD.
    And of course - the BIG Q is so now what?!  I find the fatigue is SO overwhelming and I don't have my usual concentration  or energy - so slowing down and acceptance has been hard but I guess, necessary.

    I said this earlier this year:

    Being diagnosed with breast cancer is a shock.  I had an ominous feeling that it may be breast cancer but had told myself that if the worst came to the worst, I could lose my breasts as they had done their job of breastfeeding my 2 children for over a year each.  But I wasn't expecting to hear the word CHEMO and this terrified me the most.  It took me a whole week to digest the proposed treatment strategy but none of this prepared me for the second tsunami.

    One week later after being told I would have chemo, followed by double masectomies then radiotherapy, I was told that it was stage 4 advanced metastatic breast cancer which has gone to my skull, collar bone, ribs, spine, pelvis, femur and humerus - don't think many spare bones left.

    The prognosis flipped and chemo or surgery were no longer viable options - too far gone!  But this may be what saves me as chemo can be SO destructive.

    Three days later I had my ovaries out - this was the easiest decision of all - one where I had some control. This cut off the fuel supply.

    I was screened for a clinical trial with all hopes/focus pinned on this, but then learnt that I failed the eligibility criteria because the sclerotic bone lesions were not quite the full 10mm. So fulvestrant injections because the main cornerstone of conventional medical treatment to deplete and block all estrogen. I also commenced XGeva, a drug to help with bone stability.

    Wow - what a tumultuous 11 weeks (now 8 mths!). My diet has been totally revamped too - no dairy, no pumpkin, eggplant, alcohol, red meat or fish with scales, no sugar and no microwaving - according to the consensus of expertise - and its amazing how quickly we can adapt when we need to.  The irony is that I look "well" - almost with a glow - thanks to no wine or sugar and plenty of exercise. The emotional fallout from induced menopause is NOT fun - but hoping to offset this with acupuncture and patience.....

    But I now have one glass of red on Fri and one on Sat, or have had the odd glass of 2 of champagne - e.g. when I saw ABFAB!

    Life goes on - still at a seemingly alarming pace: I celebrated another birthday last weekend on Mother's Day, my daughter turned 9 the week prior and my son turned 11 earlier on March 1, only a few days after oophorectomy (what a great word) and some amazing mums rallied together to organise a surprise birthday party for him. There is still so much to witness....almost on a daily basis and guidance from their mummy is still so much needed - even though they're so mature in some ways, they are still so young.

    I went to a cancer patient retreat in April and discovered an incredible bunch of people from all walks of life with a diverse background and age and we all shared this incredible, hard to describe bond - yes, a club/group that I never expected to belong to. So, it's been an amazing experience to date - one that I can't change or ignore or deny - so very hard some days to feel totally engulfed in fear and anxiety, yet other days to feel loved, supported and also empowered. I will write about it. 

    As someone said, it's not like you can have cancer, deal with it, and put it aside while you get on and do what you were doing - it changes everything in an instant, and there's no going back.

    On OCT 6th, I graduated with my PhD.  The Dean said this:

    Your education at Sydney [university] has prepared you to take your place in the world wherever you want that place to be. You can make it to the top of your field, and many other fields. But what I want you to think about is - don't just take your place at the top of the world, but to CHANGE that world. The world you are headed into needs YOU. And you are up for the challenge!

    She then quote this:

    Whatever you can do, or dream you can do, begin it. As Goethe said: Boldness has genius, power and magic. Begin it now - it's fun and it's endlessly rewarding."

    So! Deep breath(s) and let the journey begin - such inspiring words and now my dream is to inspire others and leave a brilliant legacy - with the help of ALL OF YOU!!!

    And finally with Halloween and Thanksgiving rapidly approaching there was another posting on INSPIRE (a US site like this) that posed the following question:

    “What are we thankful for with Thanksgiving approaching?”:

    And this is what I said:

    I am thankful that some courageous women are walking in Washington DC this coming Thursday (MBC awareness day) and raising more awareness: - decreasing the taboo and stigma and attracting (hopefully) more research.

    I am thrilled that I am on a clinical trial (in Sydney)

    I am forever indebted that I found a brilliant oncologist (4th one!) - she is like "god"

    I love my 2 children (11 and 9) more and more each day - and soak up the "ordinary" moments and find humour in their remarks (or attitude!!) if I've had enough sleep

    I am grateful to my ex-husband who helps with some of the washing/beds etc. 

    I am grateful for my diverse circle of friends - because WE ALL GET IT - and that is that you cannot over-burden even close friends as they all have their families, work etc.& at times I (we?) feel very isolated.

    I am impressed and determined that I can do Iynengar yoga and pilates - with grit - despite the mets being riddled throughout my skull, ribs, spine, pelvis, femur etc.

    I am over the moon that I found the will to do the emendations to my PhD and then graduated early October - so now am Dr Elaine George (drelaine.george.com)!

    - And now I am accepting and taking on my new challenges of writing and creating advocacy so that I can inspire others and leave my legacy

    And I am indebted to those brave women (e.g. Holly Kitchen in the US) who did so much.....

    And finally, and perhaps first and foremost, I love the opportunity to share information and emotional support in this online community - just wish we could "see each other" more often

    Elaine :) x

  • Karen_CKaren_C Member Posts: 46
    Elaine you are a very courageous woman and I can only say I am full of admiration.   Just reading your response and subsequent blog is amazing and congratulate you on the way you are handling your life and obviously living it to the full.  No doubt you will leave a legacy.   I too share your concerns that MBC dosen't get much awareness and I do believe that there is an element of "Pink Fatigue" out there.  Not sure if you are considering or have received an invitation to apply but  I am putting my application in today for the BCNA National Summit in 2017 taking place Thursday 16 and Friday 17 March.  If the stars align, perhaps we will have an opportunity to say hi.

    I agree we need to get a conversation going about living with MBC to debunk myths about what we as people can do and get powers that be to start listening and make changes.    There are many challenges because our society is not keeping pace with medical technology.    

    Medical

    Quick access to drugs.  PBS system needs an overhaul.  Currently drugs that demonstrate a clear patient benefit before overall survival data can be made available is not considered. Treatment outcomes such as significantly improved quality of life, or the measurement of improved symptom control should be considered.

    Work

    Workplace has Workcover for workplace injury, why not integrate people living with chronic illness.   I have been forced to go onto a Disability Pension as I have exhausted my income streams.   This has happened prematurely.    With a growing older population who are being encouraged to work, attitudes and considerations/adjustments for an older workforce need to be addressed.

    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.  

     Pension

    I am on a Disability Pension but I have cancer not an impairment that is obvious, therefore Centrelink and Disability Support Pension Employment agencies do not know how to handle someone in my situation who is skilled and not overtly impaired.

    I know these are big issues, way beyond my sphere of influence which is why I have aligned myself with BCNA.   I am getting stronger again so intend to start lobbying again in political circles to try and at least start conversations.   I am aware that changes have begun in regard to gaining access to drugs as they have been approved by the Therapeutic Goods Adminstration but they are still not affordable.

    Thanks for responding and take care.

    Karen C

     


  • ElaineGElaineG Member Posts: 50
    OMG Karen - I resonate with all that! I've been trying to find like-minded women since Feb!!
    jm so keen, passionate, determined to do lobbying work in so many ways....
    i sent some media releases out last wk for Int MBC awareness day - lots of interest but it ended up falling flat bc of SO much done already with pink.
    Among the ridiculous anecdotes that have occurred this year us one receptionist inquiring how my Tx was going at hospital - AFTER a session with an acupuncturist. She assumed I was having radio but I said no.  Can you believe that she then asked when my treatment would be over??? Apart from wanting to shoot them - the answer is when I'm 6 ft over - but hopefully that's not for at least a couple of decades....
    theres so much we need to do -
    I'm writing a bk on emotional resilience (in light of a 'fatal' Diagnosis) as I do believe we can help others live with greater purpose/ meaning without having to confront their mortality with an illness.... I love some of your comments - perhaps I can quote with your permission?!
    gosh - agree so much re work etc too - everyone needs to feel "productive" 
    yes I'd  to attend/ speak at the summit in April
    also keen to any other advocacy/rep work
    And next yr -  FRI Oct 13 - am organising a flash mob dance in Martin place  - better than a "die-in"/walk like they did in Washington DC.. but it will get news/media coverage which is SO desperately needed!  So the more of us the better!
    thanks for your long response 
    excuse my punctuation 
    am sending from ph!

    best wishes, Elaine 


  • ElaineGElaineG Member Posts: 50
    Forgot to say that Malcolm Turnbull did acknowledge Int MBC day - but still a LONG way to go!
  • iserbrowniserbrown Member Posts: 1,652
    Ladies I admire your determination - goodness you're dealing with your diagnoses in such an eloquent way!  Take care both you and I am sure that your advocacy will gain momentum through this network

    Take care from Christine xx
  • ElaineGElaineG Member Posts: 50
    Thanks Christine - I'm "deadly" serious re organising the event for next year - its a FRIDAY - Oct 13!  So the more ladies we can have in Martin Place the better....
    And we can explore temp accommodation for those who want to visit - or a link up somehow - got to think about those logistics! :)
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