Forum Discussion
I’m Not Cancer but Cancer is a Part of Me
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.
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
25 Replies
- I'd like to add - it's a part of life - I'd like cancer to be talked about openly and normalise it rather than feel I'm part of a secret society.I don't mean I want to talk constantly about it nor do I want to feel a leper to be sidestepped or to be spoken about in hushed terms - i am neither ashamed or embarrassed by my diagnosis and am just getting on with enjoying my life . Cancer is part of me not all of me - it's a part of life not all of it.I think we need to be inclusive with others to remove the stigma and fear the "C" work invokes and maybe show that life goes on and that we are still part of it.Thankyou @ElaineG for what you have written.
- Hi Ladies - FINALLY..... have got it off the ground with BCNA and McGrath approval/support etc!!!
There have been some hurdles!!
I had 2 x total hip replacements in May (then lots of rehab) and pending bilateral masectomy in early Sept - 5wks before this inaugural event planned for MBC day - YAY!!! Hopefully national next year and am hoping it goes viral.
So will post more shortly this week. - Hi Elaine
This will be my new aim: to be there on October 13th, 2017.
I've had cancer for more than 5 years now, and am still feeling well and being active.
I wish I could offer to help organise the day next year, but I'm currently feeling overwhelmed with all I want to get done.
Maybe in the new year, I'll feel I have some spare time so please keep me in the loop.
I'd LOVE to see some colour other than pink!! I've always disliked that colour and won't wear it.
I feel busy with ocean swimming, regular gym visits, writing, reading, time with family and friends, getting all my photos organised, movies, downtime .... all while feeling tired from my medications (Fulvestrant injections plus palbociclib at great expense from overseas) Also medical appointments of course.
It's great to find women here in the same situation as me - I'm at Stage 4, and ignoring it whenever possible. There are happier things to talk about with friends and family, and the political situation both here and overseas is depressing enough!
But I'd like to talk online with people with MBC as we are in the same boat.
So thanks for all your advocacy, Keep It Up!
And keep feeling as well as possible
Caro (SunAndSaltWater) - Hi ElaineG
lots of research since diagnosed in july ..seems its the long haul for me...yes lots happening in US re funding research and some states have super mets groups upping the agenda. Agree we need to be more pro active for funding researchfor Mets in aust. Also pink needs to be reworkedfor me ! What about red and pink - Hi Sheryl - sorry, still navigating my way around this site....
Is it just me, or others that get frustrated when I get absorbed reading another post - and realise it is the "other group" - the one which we DON'T belong to.....
The more the merrier for Martin Place - it is SO needed! - Brilliant share - well we have 11.5 months to plan it!!
- Oh and Karen and other interested ladies - before I forget and October is over, I posted this last wk - so please comment if you like - as this goes out to the "real" world!
https://www.linkedin.com/pulse/alive-well-mbc-dr-elaine-george?articleId=8926635239764652041&deepLinkCommentId=6197600388707799040&anchorTime=1477623078523&trk=pulse_spock-people#comments-8926635239764652041
regards, Elaine - Hi Elaine -count me in for Friday Oct 13 2017 in Martin Place. I live in Sydney and at the moment work in the city - am determined that it will still be the case in 50 weeks time ! Thanks for your tip about the book also in response to my discussion - I firmly believe that we all need to be informed and aware. After all, it is in our best interests !
- Sorry - not sure what happened with the above post - it deleted my link.
I shared this on dr elaine george linked in:AND THEN THIS MORNING ON another site but in the US, I shared this after a vigorous discussion on how research $$$ are divided up between MBC and early breast cancer.....but best of all a post that took me to the ABC (advanced breast cancer) site - it is amazing and you can actually watch highlights from the 3rd international conference in Jan this year!So...one week ago, I was told to be bold and brave... when I received my doctorate!
Oh how I wish we could (sometimes) be more proactive like the US without the Trump factor.
However despite the Hillary and Donald duo and their hogging of media attention, some brave women in the US have gathered in BLACK - yes black, to shun the sickening candy pink we see all throughout October and are doing a march in Washington DC to raise further attention about MBC Awareness day - yes, you may say, "What! - another awareness day!" - but this is MBC - and no-one gets out of this alive...
OMG - the no. of times I have heard (in 8 months) variations of:
Oh well, you're strong - you'll fight it/beat it...
You'll conquer it...
You're so positive - you will survive it.
Oh, by the way, when is your treatment over?
So, are you in remission?
Why are you not having chemo? I love my stock response - because I'm too far gone - people at this point generally retreat fast or look just a little more puzzled or confused.
Having cancer is like being pregnant - you are absolutely flooded with information - some better than others and much of it unsolicited. The fundamental difference however is that one is regarding the arrival of a new bundle of joy versus the other having an ending that is not quite so joyous.
Much of this you have to navigate and sift through yourself - more on this later as I embark on an exciting blog to come...
But back to MBC - how exciting that Malcolm Turnbull actually did give it some credence in Parliament this afternoon - but we still have such a long way to go.
A few brave ladies gathered for a one day seminar today in Sydney to hear the launch of BCNA new "hope and hurdles" package. Much of their activities have previously focused on early breast cancer and as a MBC nurse judiciously explained, 10 years ago a MBC diagnosis meant one foot in the grave - now not necessarily so - yet we need more research, more clinical trials, more media attention and far more public awareness and social support - especially for young mums like me with young children!
Hi ladies - thanks for sharing the data, comments and opinions - it is SO interesting to review, and thanks so much for the link to the ABC - it is well worth looking at the video from the conference this year in Jan - one mth before being diagnosed with MBC (only one wk after stage 2 - so initial treatment started - which may be a "good" thing in terms of what treatments I'm eligible for.....
I do agree with some of the comments re research being ploughed into immunology etc makes it difficult to ascertain exactly what % is going into MBC....BUT on the BACK OF 13 OCTOBER HERE IN AUST - I could not help but feel incredibly disillusioned that we have been pinked-out as has the media - with NO INTEREST to do a story on MBC despite my willingness to be the 'talent' they always seek for those kind of stories.
Having been living with this diagnosis just under one year, I'm relatively new to the MBC "landscape" but am frustrated with the term "survivor" versus metavivor or thriving with cancer..... OK each of us may differ with our preference for semantics but the basic point of education that is needed here is that research in MBC is NOT FOR CURE but to prolong the mean time before the progression of disease - this is the end pt for all studies in MBC now.
We are moving into another generation of research post the AIs and now with the CDK's and ones coming thru the pipeline - this is where resources are needed and ADVOCACY.
Again thanks for sharing - I love this site!
Best wishes, Elaine - Oh and Karen and other interested ladies - before I forget and October is over, I posted this last wk - so please comment if you like - as this g
