Milestones
My dear Alex is now 8 - my funny, sweet stubborn little girl - who has a grateful list most nights that is so long I sometimes have to say - enough now - keep something for tomorrow night! Finished Year 2 and onto year 3 next year - a fashion plate, you were not happy this afternoon as I brought to wrong bathers for you to swim in! I love you more than you know right now but one day, if you become a mum you may begin to understand just how much I love you and how heartbreaking it is somedays to just live knowing everyone thinks I am going to die young. Other days it just seems like a dream still and I am waiting for the letter or call to tell me the mistake that they have made - I'll stick with that feeling for today :-).
Gus my "popular, caring and sensitive little boy" (the words of his kinder teacher) you have now finished kinder - I'll never sign in a kinder book again. This week you wore your prep uniform to kinder to practise (and I had to soak it in napisan every night!) - you want to be grown up so badly but you are not so keen on having to sit at a desk and learn to write. I teared up today - not because I am sad my baby is growing up but because i am so grateful I am here right now. I do wander into that place that's darker and I saw the year 4's all excited about leaving and heading to the big school and I thought, will I be here to celebrate with you? 5 years is a long time, I want to be here to shake your hand in 13 years when you graduate. I know that is stretching it - it will take a miracle, but miracles do happen - maybe i will be one of them - sometimes I truly believe that I can be - why not? You threw a doozy of a tantrum the other night - it went on forever, all over the tomatoes in the dinner - I didn't give in - I can't keep giving in - I am still your Mum - you were tired and once you calmed down we read a story and you went to sleep (yep without the dinner or dessert) then I cried - why can't it just be fun times - but it can't if we are normal - it's not fair that I won't get to have my big boy, taller than me hug me and tell me how much he loves me all grown up - well that's where my head was anyway - you can take the tanties and the like as you know they will stop and you will reap the reward of good parenting with a well rounded adult except I probably won't live to see the well rounded adult and my likely death will throw a spanner into that wheel too. I know how wonderful my husband and family and friends will be. I know I will be an example to my kids of determination, mindfulness, resilience etc - but odds are I won't be there - and that's what sucks.
Now that's all really negative - but it's where my head goes sometimes. Can you guess - yes, scans are around the corner. Monday in fact. Bugger, bugger, bugger - the joy of trials - I'd put it off until after Xmas except that the trial protocol is every 6 weeks. I have no bloody idea what the scan will show - I can't guess anymore I've been wrong too many times.
I'm living - I'm enjoying living. I have a wonderful new car - a dream car - a convertible. I don't care who thinks it's flashy or ostentatious. It is very me and fits me and the kids, the schoolbags and we all have our caps and sunnies and put the radio on and enjoy the sunshine. It's material - I don't really care about the material but I thought - why not? I'm still eating really well,exercising (when I can as it is crazy busy at the moment) I still feel good apart from the invisible enemy fatigue. The treatment is not without it's side effects but they are tolerable - would love this treatment to last for years and years and years!
One other thing I've wanted to say is about the language surrounding cancer. Cancer is very unique and individual to each person who has it. Our path to health is unique. They say I can't be cured yet there are a small percentage of women with Metastatic disease who do go into long term remissions - I could possibly be one of them, one of the new treatments may work, something alternative may work, my body is pretty amazing - it may just say enough is enough and fix itself up (I know there are skeptics out there - stranger things have happened). Depsite this I am not FIGHTING - I am not a FIGHTER. I hate this terminology. Why would I fight my body - it created the cancer somehow, I am not at war with myself. Cancer is not a foreign invader. I am not battling and should I die from this disease, I will never have lost a battle. I will have died because it was time and that was beyond my or anyone's control. I am living, I am working pretty hard at living and healing. I believe in my body's ability to heal and be strong and healthy. I believe in being knowledgeable, in making informed decisions in all aspects of my life. I am not a set of lungs and lymph nodes - I am a living, breathing intelligent human being. I did not lose my intellect when I got cancer, I did not lose my self respect or sense of intuition about my own body when I got cancer. I refuse to be told what is going to happen to me. So much in the cancer world is negative and superficial - I am living it and pretty darn well too. So I'll keep going for now thank you very much.
I've more milstones to achieve and oversee!
Much love to all,
A xx
Comments
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Hey Amanda
Your posts always take my breath away and make me tear up. They are so thruthful and come from straight from the heart.
You sound like an amazing, wonderful and loving mum and wife. Your family are lucky to have you in their lives. I am wishing and hoping and praying for that miracle to happen in your life as well so you can continue to love them and watch them grow.
It must be so hard to keep it "normal" but as you say you are a mum not a friend and that must be so tough.
Please keep on living, breathing, healing and being that beautiful intelligent being that shines through to us in your blogging.
I am glad you are such a wonderful voice for ABC.
You and your childrens smiles speak a thousand words.
Enjoy driving along that windy, bumpy road with the top down and the wind in your face and the sun shining thru.
Sending you lots of love and healing hugs your way.
LOL, Mich xoxoxoxo
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You are one of the toughest, strongest, intelligent,drivin,respectable,understanding and inspirational woman i know.Not literally of course.You have so much hope and so much to live for.
I to hate the cancer terminology.Fighter,battler,survivor,etc.Oh my god enough already.You put it right we are humans,mums,friends,sisters,daughters not a cancer label.
My thoughts best wishes and prayers are soo with you xxxxx
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Hi MandaMoo,
Thank you for your post - I felt a little funny reading it as it seems to be a beautiful letter to your kids that if I had written it, would want to keep private between me and my kids (it didn't stop me from reading though - perhaps because we have now met, I can hope to get to know all the characters from this story).
I wanted to add re: the language of cancer that it is so true that we can't be fighters, as such. When I was diagnosed with primary, the program was set, it was clearly defined (mastectomy, 5 months chemo, 2 months radiation and reconstruction if you choose), but with secondaries, it's different. It's all unknown and not defined. People often asked how long I will need chemo for, I answer now, as long as I want to live. Whilst I don't wish cancer on anybody, and wish I didn't have it myself, now that it's in my lungs, cancer and I are just going to have to get to know each other, and learn to share this body if we are going to continue living in it. (starting to sound like a bad sci-fi movie), but I hope you get what I'm trying to say. If cancer can sit around in the body undetected for so long, why can't it say stable with our treatments and let us keep living for the things we want and need to accomplish before we go?
don't think about Monday until Monday. It's easy to say, I know but worrying beforehand doesn't change the outcome and although scans can feel like a setback if the news is not what we expect, they are like school reports, a tool to use to see where we need to improve and (hopefully) what's working and what we should continue to do!
Will be thinking of you
Penny
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Hi MandaMoo,
Thank you for your post - I felt a little funny reading it as it seems to be a beautiful letter to your kids that if I had written it, would want to keep private between me and my kids (it didn't stop me from reading though - perhaps because we have now met, I can hope to get to know all the characters from this story).
I wanted to add re: the language of cancer that it is so true that we can't be fighters, as such. When I was diagnosed with primary, the program was set, it was clearly defined (mastectomy, 5 months chemo, 2 months radiation and reconstruction if you choose), but with secondaries, it's different. It's all unknown and not defined. People often asked how long I will need chemo for, I answer now, as long as I want to live. Whilst I don't wish cancer on anybody, and wish I didn't have it myself, now that it's in my lungs, cancer and I are just going to have to get to know each other, and learn to share this body if we are going to continue living in it. (starting to sound like a bad sci-fi movie), but I hope you get what I'm trying to say. If cancer can sit around in the body undetected for so long, why can't it say stable with our treatments and let us keep living for the things we want and need to accomplish before we go?
don't think about Monday until Monday. It's easy to say, I know but worrying beforehand doesn't change the outcome and although scans can feel like a setback if the news is not what we expect, they are like school reports, a tool to use to see where we need to improve and (hopefully) what's working and what we should continue to do!
Will be thinking of you
Penny
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Beautiful letter Amanda and you are right, miracles do happen! I am living in the hope that I too will be one of these miracles...I have to! I try not to dwell on the negative...on the fact that my life will no doubt be shortened due to this insidous disease. I cherish each day and often wonder if I am in denial, as I can usually push ABC to the back of my mind and get on with things. I am so grateful that I am able to do this at the moment...I am living well under the circumstances and treatment is working for now. I will be thinking of you on Monday, and praying that you get good scan results..."stable" is one of my favourite words...anything more than that is an absolute bonus
Take care, Celeste ?0 -
Hey Penny
Thank you for giving us with EBC a better vision of how different it is for you beautiful people who are enduring ABC.
I wish you well.
Mich xoxo
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Hi Amanda
I will be thinking of you on Monday. Fingers crossed scans show the treatment is working and you can stick with it. I have scans on Wednesday so I am also feeling a bit uptight about it all. Even though we can't do anything about the result it's still nerve-wracking.
Love to you and your beautiful family.
Keep smiling.
Amy x
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Hi Amanda
I will be thinking of you on Monday. Fingers crossed scans show the treatment is working and you can stick with it. I have scans on Wednesday so I am also feeling a bit uptight about it all. Even though we can't do anything about the result it's still nerve-wracking.
Love to you and your beautiful family.
Keep smiling.
Amy x
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Hi Amanda,
Hope the scans were OK - sending warm wishes your way.... Pam
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Hi Amanda,
Hope the scans were OK - sending warm wishes your way.... Pam
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Hi Manda,
There are also quite a few new ABC girls blogging. You might want to have a look at what the others are talking about as well.
- http://www.bcna.org.au/user/11320
- http://www.bcna.org.au/user/11327
- http://www.bcna.org.au/user/11186
- http://www.bcna.org.au/user/11268
P.S - you always write such honest and powerful blogs :-) Sending love to you and your family over Christmas and I hope you have some really nice celebrations planned!
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Hi Amanda,
Well, not only PTS; maybe a reactive depression too. Anyway, I think the SRRI's helped with severity of flushing too, and also some perception of pain.. I was told this by Psych. I did leave things longer than I should, therefore I urge people to get help early..talk to someone professional and / or take meds if necessary. They can help you to feel a bit better. No point in being miserable and stressed, unhappy, irritable and focusing on your pain ! I also take livial.. which has sort of like a hormone effect, but not a hormone. You can google it. I have an oestrogen pessary twice weekly also. I do not like taking ANYthing really.. but..well..I do not want to be miseralbe and will try and keep well as I can. My body does feel like it has aged 10/ 15/ or even 20 years older than my peers since chemo effects, I have found those 65 to 75.. are at my physical level almost. I relate to younger people too, but not their energy level...LOL
I better do what I want to now.. cos ..who knows how long we will be here.
I am on a pretty level playing field now and pace myself, rest when I need too etc.. and KEEP THINGS SIMPLE... LOL
I am glad you have support and you are assessing things as time rolls on.
Have a nice xmas.. and keep those blogs coming ( no pressure though.. do not feel obligated; only if you have time and the wish to )... all the stuff.. good and bad. Your writings may help someone else in the same situation and us early BC people too.
You do have a way with words... The best to you and your family, they and you come first.
Kathy. OOXX TC.
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Hi Celeste, Stable is great.. ( for me too. )
I wish you a happy Xmas...
Love Kathy.
P.S... A SA and Uluru trip may be on the cards sometime in 2013.. or maybe 2014... Then again living " in the future " does not always work. Present is best now, but it is on my bucket list ( have you seen the movie? )
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