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The Good Things

MandaMoo
MandaMoo Member Posts: 500
edited September 2016 in Metastatic breast cancer

I love reading the comments that people write on my blogs - for me writing is a brain dump.  Often I feel the need to dump when something is playing on my mind - usually these are the more difficult things to nut out.  I less frequently feel the need to brain dump about the good stuff.  It came to me though, as I read your comments that perhaps you see a skewed version of me.  That's ok.  I feel it is greatly important to share the downs and the ups of living with advanced BC, the realities of it because I spend so much energy of staying UP!

But there are so many good things in my life.  I feel I am one of the lucky ones.  I still have very few symptoms.  I have no pain that regular panadol can't fix (it is all treatment related not cancer related).  I tolerate my treatments with remarkably few side effects - the main one being fatigue but not the type that keeps me in bed every day - I just don't have the energy that I used to have and which is normal for a 40 year old woman.  While cancer dominates my life - this can be a good thing too.  It informs the way you live.  You get annoyed with a tantrum or an incident and you think - well I could be dead tomorrow - what is true to me - how do I leave this?  

I have learned so much about myself.  I am learning about my amazing inner self - my intuition, my inner voice - this may sound a little woowoo for some but it is true for me.  

I actually have not given up hope that I could get better - there is a little voice that laughs at that (the one that reads the drs reports and my history) but the louder voice is there too - it IS possible.  I avidly research treatments, I jump onto trying something new when the other thing stops working- I hope without abandon it will work (and feel the letdown totally when it hasn't).  I am not a stupid woman.  I am very well educated - I have worked in the health sector, I have worked in marketing.  I understand statistics (though that was something I was never good at either at school or uni) - I know the "odds" - but I am an individual.  I also know that the statistics are based on old information, not taking into account current therapies. I also understand the tyranny of the median.  Beyond the understanding of statistics,  I also know that medicine is not infallible.  I know that there are many other modalities, complementary therapies, unknowns that can play a role in a person's survival.  The mind is a powerful tool - it can influence body chemistry - this is proven - to what extent is unknown.  There is also power in the anecdotal story - there is power in meeting real "miracles" - those told they would not survive who are still here.

 The power comes from within.  I am known to not be fond of the word "fighter" or "fight"  or "battle" as I refuse to get up each day and treat my life as something so conflict laden with a win or lose outcome.  It is my life, the last thing I want is to battle every day. Regardless of whether I die from cancer or something else - I will NEVER be a loser!  Sure to others it may seem I am fighting.  I am giving it my all to survive.  I am not sitting back and "accepting" my fate, having had the bone pointed at me.  Most days I do all I can to defy the shitty odds - so I guess to some this seems like I am a "fighter/battler/warrior". To me there is no choice.  I want to live and live well.  I will not spend my time sitting back and accepting and walking off into the sunset.  

Our life is pretty normal - mostly it is the life of an average family with three primary aged kids except Mum has medicine that she has to get regularly to keep her well.  We also have help around the house as I can't manage it all and that gives me time to focus on doing what I need to to remain as well as I can.  To my children, cancer is a chronic illness, which I manage the best that I can.  Chemo is as common as vegemite.  Sure, there are anxieties and stress that wasn't there before.  Children are intuitive.  All families have stress of some type - this is ours and we have our strategies to manage it.  Each day we get up and we live.  We argue at the dinner table, we laugh at the tv, we watch The Voice, we go to the markets on the weekend, we go to the beach, we go to the movies, I nag the kids about homework and music practice.  I get upset if hubby is working too hard. We have date night every fortnight and movie, followed by our regular order at our local Asian restaurant. I still am not a morning person. I still grumble around in my dressing gown as I get a cup of green tea to read the papers on Sunday. It's all pretty standard stuff 90% of the time.

So there is a huge amount of good stuff.  The belief that getting better is a possibility is number one, the belief that miracles happen close behind. None of those beliefs should hide how horrendous this can be for so many.  I have not reached horrendous - I hope never to, but I know it may happen. It is true that I personally know 4 young women who have died already this year - that is real.  It is also true that I have a very good friend who was told 5 years ago she had 6-12 months and she is cancer free and has been now for over 2 years.  I have other friends who have had brain mets, liver mets, chemo induced leukaemia in addition to liver mets who are here 5 years on and stable or in remission.  It IS possible.  There is no formula - I am working out my own.  

So yep - there is some really good stuff too. ;-)

Be Well 

Amanda xx

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Comments

  • Mich x
    Mich x Member Posts: 1,530
    edited March 2015
    Thank you Amanda, you are such a wonderful person with great spirit.  Your writings keep me pinned to the screen from start to finish.You put everything in your life and others lives in to such simple and easy to understand perspective.Keep on brain dumping.  We are glad we can be here for you to do this and thank god for BCNA.Everything IS POSSIBLE.Lots of love always,Mich xoxo
  • Mich x
    Mich x Member Posts: 1,530
    edited March 2015
    Thank you Amanda, you are such a wonderful person with great spirit.  Your writings keep me pinned to the screen from start to finish.You put everything in your life and others lives in to such simple and easy to understand perspective.Keep on brain dumping.  We are glad we can be here for you to do this and thank god for BCNA.Everything IS POSSIBLE.Lots of love always,Mich xoxo
  • Sorelle1969
    Sorelle1969 Member Posts: 51
    edited March 2015
    What a wonderful post. We are very similar in so many ways, we were even diagnosed on the same day and year. I hear and feel you're pain, hope and love for life.
    Please continue to write and share you're thoughts, I'm thinking it has great healing properties for you and others on the site.
    Take Care
    Sorelle xx
  • Leonie Moore
    Leonie Moore Member Posts: 1,470
    edited March 2015

    I hear all that you say - my problem is "fitting in" everything that I feel I need to do while I am still well whilst still trying to live in normality for all those around me.  You give so much to others Amanda and yes thanks for telling that there is some "normal" stuff.  I actually said something to my husband this afternoon and his reply was full of sadness.  He lives this "horror" more than me......I have found support through my Pink Sisters....he lives it alone (that is how he has chosen - with a wall around himself for protection)  I am determined to live a long life .....for me but also importantly I couldn't bear to leave him alone.  Miracles do happen - and while we believe - they will. XLeonie

  • TonyaM
    TonyaM Member Posts: 2,833
    edited March 2015

    I love to read your blogs whether they are up or down.They are so well written  and from the heart.You are living your life so well and enjoying the ordinary,simple things each day brings.I've seen walking miracles too.There is one in my art group.She has mets in her bones and was only given 12mths. That was 4 years ago.Doctors sometimes get it wrong.Since my first bc diagnosis in 2003,I've read so many books on the subject.The 2 that I found very interesting were "biology of belief" and "foods that fight cancer". You can't do anymore than what you are doing Amanda -and from what I can see,it's working.With all your first hand knowledge,you are an asset to this network and your blogs inspire us.You remind me to enjoy each day with family, not to worry over the trivial and to be grateful I've twice recovered from cancer.

                                                         Tonya xx

  • TonyaM
    TonyaM Member Posts: 2,833
    edited March 2015

    I love to read your blogs whether they are up or down.They are so well written  and from the heart.You are living your life so well and enjoying the ordinary,simple things each day brings.I've seen walking miracles too.There is one in my art group.She has mets in her bones and was only given 12mths. That was 4 years ago.Doctors sometimes get it wrong.Since my first bc diagnosis in 2003,I've read so many books on the subject.The 2 that I found very interesting were "biology of belief" and "foods that fight cancer". You can't do anymore than what you are doing Amanda -and from what I can see,it's working.With all your first hand knowledge,you are an asset to this network and your blogs inspire us.You remind me to enjoy each day with family, not to worry over the trivial and to be grateful I've twice recovered from cancer.

                                                         Tonya xx

  • Josie13
    Josie13 Member Posts: 79
    edited March 2015
    You know what? There is always hope! Sometimes I think I get hope and "putting my head in the sand" a bit confused......it works for me and that's what counts! It's important to be kind to yourself and not put too much pressure on yourself. There is a lot of pressure to be brave and strong when we don't feel like that at all.........my personal motto now is "just do the best you can" and I think this every day as it lets me be myself.I once saw a tiny pre term infant in the hospital humidicrib and her name was Hope, I often think of that baby and her parents naming her.
  • Amy
    Amy Member Posts: 233
    edited March 2015
    Thanks Amanda for sharing another great post with us.  I think I am much more hopeful and believing in a miracle because of my children.  They are a wonderful reason to get out of bed and live as normally as possible every day.  Like your children, my kids think chemo is just a normal part of our lives and so don't freak out about it.  I have bad days too. Today is one where I have little energy and am feeling breathless and a bit sorry for myself.  My husband has taken the kids off for a couple of hours so that I can rest up.  I'll probably have a good cry too - good to get those emotions out rather than bottling them up.  Something I am just learning to do.Take carexxx
  • moira1
    moira1 Member Posts: 449
    edited March 2015

    Once i started reading your post, i couldnt just skip over it, thank you for sharing your thoughts with us, We all have good days and bad days, and have probably learnt to appreciate the good ones, Your story, hit home with me, as i am sure anyone else who reads it. and all we can strive for is to NEVER give up hope, and like you say, stats are based on older information, who knows what will be available tomorrow.

    Please keep writing your blog!!!

    thanks and Regards Moira

  • jandy23
    jandy23 Member Posts: 234
    edited March 2015
    Love reading your posts Amanda - the ups and the downs. Hold on to your hope. Life surprises us all the time, sometimes in good ways. Thanks, Janet.
  • jandy23
    jandy23 Member Posts: 234
    edited March 2015
    Love reading your posts Amanda - the ups and the downs. Hold on to your hope. Life surprises us all the time, sometimes in good ways. Thanks, Janet.
  • NaturalBel
    NaturalBel Member Posts: 542
    edited March 2015

    Well done for sharing how you feel and we all admire honesty and getting to know each other through a common thread.  I have banned myself at times from the computer because I get annoyed with people I know some-times having another fabulous holiday, or enjoying themselves.  Silly, really that word Envy.  But we do only have one life, and youre right its about trying to remain as happy and motivated as we can.  I laughed the day my breast care nurse Susan Schwabe first met with me and we discussed in our dry sense of humour the question I asked "So tell me, do grumpy people do worse than happy people?" and she said "Bel, there has been no research done on the outcome, but you will be a hell of a lot more appreciated when youre smiling!"  So I agree with that one.  This website has given me the sanity to say how I feel on good days and bad, to ask the questions and find answers and to feel I am never alone.  Most of all, it gives me access to many wonderful women in my situation.  It means the world to me!  Love Bel

  • pisces_tas
    pisces_tas Member Posts: 474
    edited March 2015

     

    I enjoyed your comments and good to know you have hope and are living well most of the time.

     Our Inner Voice.. I agree, it is at times of quiet reflection for me, I hear my inner voice. Also when I was first diagnosed and very fearful, I had a few thoughts pop into my head. I would be interested to hear more about that from Amanda and others..

    I am off here for a couple of days. I hope to do the Dove Lake Circuit on Thursday; takes a few hours. I have decided it is time to do some of the things on my Bucket List.... Bye for now ... Kathy.

    Update.. I did it, Yahh ! and it has inspired me to set a few more goals.

     

  • pisces_tas
    pisces_tas Member Posts: 474
    edited March 2015

     

    I enjoyed your comments and good to know you have hope and are living well most of the time.

     Our Inner Voice.. I agree, it is at times of quiet reflection for me, I hear my inner voice. Also when I was first diagnosed and very fearful, I had a few thoughts pop into my head. I would be interested to hear more about that from Amanda and others..

    I am off here for a couple of days. I hope to do the Dove Lake Circuit on Thursday; takes a few hours. I have decided it is time to do some of the things on my Bucket List.... Bye for now ... Kathy.

    Update.. I did it, Yahh ! and it has inspired me to set a few more goals.

     

  • Leonie Moore
    Leonie Moore Member Posts: 1,470
    edited March 2015

    It sure feels good to "get out there" and be free to fly. XLeonie