Being a Voice
It's been a while since I blogged but I have been thinking lately about the small voice of those of us who are living with advanced BC.
So I thought I would try to blog a little more regularly to be another little voice, another way of making a small contribution.
I recently celebrated turning 40 and found loads of great photos - I am an avid photographer but I have to say I am a very poor cataloguer - better with digital but still not great. This morning Mic and I were working on a school project in which she need to do a photo board and I started going through the loads of pre-digital prints! What a mess - it is one of those jobs that never gets done. It seems as I look that I am missing Alex's Christening photos and I also "lost" her birthday photos from 2009 with a hard drive crash. Little things but frustrating - what if they need these images to remember me? I remembered that I only half finished Alex's baby book and poor Gus doesn't even have one. They have loads in their memory boxes but boy - life was busy when they were little and it is still busy now they are bigger. I did manage to get my photobooks up to date until 2008 and I'm still going with the others but getting there. The problem with being a photographer is you want to enhance all of your prints - even the family snaps! Then you often get sidetracked on a trip to disneyland and before you know it, hours have passed and nothing is achieved. Then I panic - I have to produce these, they have to be printed, no one will know what to do with it all when I'm gone. It may sound morbid but these thoughts are never far from my consciousness. I am far from dead but I have a newfound appreciation of how quickly things can change and feel this urge often to organise my life more. Photos are just part of it, funeral planning another, letters to my children another - but it all takes time and so does living with cancer, and so does raising a family and then it can get overwhelmingly anxiety provoking! But I chip away at it all and try not to get consumed by it.
I have put a few things in place - slowly for later. I am still to do an advanced care directive with my oncologist but I will do that with her in the New Year.
You know, very few people will discuss death and dying with you. It is apparently, a sign of giving up but I don't actually want to be doing these things when I am dying - I just want to have a good death so I would prefer to plan these things now - yet still I hesitate. It is non sensical to think that it tempts fate - in fact, in facing death I think I live my life better, I would be less anxious knowing things are in place. Yesterday, the topic of burial came up when the kids were chatting in the car - this gave me a chance to tell them my thoughts without going too far - how I wanted to be cremated and scattered in the water and the breeze to be at one with the world and them forever - the reply - "oh mum, surely that just adds to the pollution!" I have tried to talk to others too but few will go there - there is a look in their eyes , that warns, "don't go there!" so I have a few confidants and they will help me, some will just be written and we'll go from there.
You know, when you realise you are going to die - (as we all are, but when you have an illness with no cure it is on your mind a little more), everything starts to feel a little like you are ticking boxes. I had a teary episode yesterday - saying to my husband about the possible purchase of a new car - I feel like I am ticking off my bucket list and I hate that. (can i say though that I had the most fun driving wildly impractical cars for a mother of three in the Melbourne sunshine!)
I am just rambling a little today - perhaps if I blog a little more regularly my thoughts will be a little more ordered.
I often visit the site here and read the posts - many from women just diagnosed. I really hate this disease and how it affects so many. I really hate the month of October. I am surrounded by cancer. It is there first thing in the morning and last thing at night. I have to admit to feelings of envy to those who talk of getting their life back. I try to see my disease as a gift to appreciate life, a chance to make it right, to live fully but I get so sick an tired of the whining about hairloss and cosmetic issues - I would have no hair and no boobs forever if I could live to be a grandmother. I get sick of the patting on the back by the breast cancer community in October when there are so many women living with advanced disease on treatments that for many are quite brutal. I doubt the stated advances are as pronounced as is claimed. I don't blame anyone for this, I just get annoyed at how good they say things are - now only 18% die (7 out of the 37 diagnosed in Australia everyday) - it's still too many. I believe some of this reduction (from 30% in 1994) is due to increased screening picking up non-dangerous cancers that are included in the statistics. I also believe that a not insignificant portion of the improved 5 year survival rate is due to improved treatments resulting in women living with advanced cancer longer (thank god!). I know of many women living well with advanced breast cancer - but many of us feel isolated in this large community - there was a collective sigh of relief that I could hear at the end of October.
That said, we need the money, we need the research, we need to focus on our lifestyles and our mental, physical and spiritual well-being. There is an answer somewhere - I'm on a quest, I refuse to lay down and be a passive passenger on this journey.
So, my part - I'm normal, I have advanced BC. I have had chemotherapy continuously for 20plus months (with a 4 week break to go to Italy). I raise three children, I exercise, I meditate, I eat well, I read widely, I am very focused on the possibility that I may find the way for my body to heal and try so hard to live just for now as I face the reality of dying everyday and that makes me live better. I have side effects from my treatments - sometimes they are difficult to bear, mostly their tolerable - I'm alive. It is so politically incorrect but there are many women I want to grab hold of and tell them how bloody lucky they are! You have a second chance - do what you can to prevent recurrence, don't moan about the downside, look at the upside - someone is always worse off than you are - and when you want your old life back - consider that cancer may have come calling as a reason to have a better life, not the old one. (actually that's my tame version - the version in my head has a little more swearing and home truth).
I think I am sounding bitter - at times I am, perhaps today I am as I have poured over pictures of my children and think its bloody unfair that we are going through this. ...but we have food, a wonderful home, warmth, love and that is so much more than a lot of children and families in this world and for that I am extremely grateful.
So this week - I will start planning for another Christmas, Alex's birthday (oh my a sleepover for 8 year olds!) and my son starting school. I have been asked if I am sad he is starting school - to which I have replied - "I'm just so glad that all being well in February next year, I will be alive to take him through the doors." Am I so different to others out there? Maybe a little bit - but for that I am also grateful.
Much love as always to all of you reading.
Ax
Comments
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Hey MandaMoo
Thank you for putting your thoughts and feelings out there. I hope it helped you feel a bit better to get it out as I know it does for me to be able to share.
I could never begin to understand how you are feeling but in reading your post it made me cry and very sad but also very mad for you. You have obviously been through so very very much and it is soooooooooo bloody unfair. All I can say is I am so sorry you and your beautiful family are going through this.
I am one of the ones who has just finished her 10 months of treatment. So I am an early BC survivor. Yes we should be very grateful we are alive with hair or no hair. I am sure we are all more than grateful we are alive and well but I also feel it is good for the soul to tell each other how we are feeling and to get it out and have a winge, bitch and whatever else we need to do because this is what this site is all about. We all need this site both early and advance BC and it is great that we can all come together as one and share how we are feeling. As you have done today. I know I have learnt so much from all the ladies on here and everyone has supported me along the way.
You know what? If I was in your situation I would be bitter, angry, sad, scared and all those other things that must come with having advanced BC. As I said I couldn't even begin to imagine.
I am glad though that you put up your post of how you are feeling. I often think and feel how tough it must be and it scares the absolute crap out of me of recurrence and what may go with it. I am doing everything in my power to get well, get fit, lose weight, stopping alcohol etc. etc. etc. as I can assure you I never want to go down the short path (compared to yourself) that I have just been down as I want to see my grandkids grow up and to see out the rest of my life together with my precious children and husband. Unfortunately there is no guarantees in life though I am afraid.
I would be one of those people who would not get that look in their eye so as not to have to discuss death as it is definitely something you need to be able to do and to be prepared and know that you have left some beautiful and very special memories for your hubby and children. Might be a silly question but have you done a video for them of yourself. I am sure you have if you are a photographer. I am sure this journey has certainly helped you look at your photography in a different light also. I know I look at life totally different these days and cherish so many very small moments as I am sure you do also.
I am sure there is so many other ABC ladies who share your very thoughts about everything you have mentioned. If only we could find that miracle cure to take this mongrel disease and shove it.
All I can say is I wish you well and that you can be as healthy as possible and as happy as possible. Lots of love and hugs to you and your family.
LOL, Mich xoxo
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Thanks Mich for your comments - and I want to be clear that I don't begrudge anyone a whinge and this site is the place for it but i've kept it in for so long I had to get it out. People are always telling me how brave, inspiring, accepting, determined......etc...etc... I am - well, I'm human and sometimes I just am plain angry.
I was just out gardening and thought - gee what I wrote was really Judgemental - who am I to judge someone else purely based on my own situation. If I wasn't dealing with what I was, would I be the same? Possibly - I too dreamt of moving on and returning to my old life - just now I can't - but I am OK with that.
And just like EBC'rs - I don't like losing hair either, or nausea, or fatigue, or hand foot syndrome, or scans, or waiting rooms, or constipation, or diarhoea, or skin rashes, or neuropathy, or cognitive difficulties but I have to make my peace with it, because it "is what it is" - I make peace and then do everything I bloody can to minimise it and more.
I just feel we are silent too often - I found out recently that many EBC girls didn't realise that many girls with ABC are on chemo continuously - that we deal with this every day, in and out usually without too much complaint but we are all different, we all cope in different ways - it is not for me to judge and thank you for no judging me.
And I plan to be happy and healthy for a very long time yet - after my son starts school I have a wedding to plan (his! I should still be here lol!)
Ax
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You go girl, you get them wedding plans happening!!!!!!!
I agree that you ABC ladies are a silent bunch. I have no idea if I would want to get on here either in your place.
I understand that you are not judging or begrudging anyone so don't worry about that.
It is great for us all to hear how you are feeling and that it stresses to us that we have to take better care of ourselves to fight to live longer and if it takes reading how hard it is for you which makes me sad and mad, then you have certainly achieved that for me.
I think it is so important that we have a site where we can come on here and speak out and not be judged so good on you. (within the network posting guidelines of course :-) hee hee
LOL, Mich xoxo
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Amanda, thank-you so much for your comments. Reading your blog made me realise that I am one of those who does complain a lot, espeically about losing my hair. It's so easy to feel sorry for yourself when breast cancer strikes. But you're right, those of us with early BC have a second chance and we sshould make the most of it, be as positive as possible.
I for one am interested to hear from those of you with ABC. I really hope I don't find myself in that position one day but it could happen. It seems extraordinary to me that you can deal with it in such a clear-headed and organized way. I guess we do what we have to in the situations we face. But I can't imagine how tough it must be.
Anyway, I wish you all the best. I really, really hope you stay healthy and live long enough to see those gorgeous kids of yours have their own kids.
Thinking of you, Janet.
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I just love that idea of that small voice. As many small voices we become louder and eventually have a great impact.
When I was 1st diagnosed one of my concerns was my children wouldnt have any photos as I have never organised them. 2 years later, still on my mind but still not done. This holidays my 13yrold daughter is going to help me now that we have a better computer. Yes ticking boxes happens to us all.
There are so many... young women out there being diagnosed with advanced breast cancer. Many of these young women have children still young and in school. It is so tricky raising a family and focusing on wellness with breast cancer. The community can help in so many ways but on the outside we dont often look sick and this is deceptive to the general public.
I would like to see a community kitchen developed based on whole food plant based diet to home deliver meals to those newly diagnosed and ability for cares and friends to come and learn how to prepare healthy meals and juices.
I would so....loved this to be available to me when I am not up to keeping the ball rolling.
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I just love that idea of that small voice. As many small voices we become louder and eventually have a great impact.
When I was 1st diagnosed one of my concerns was my children wouldnt have any photos as I have never organised them. 2 years later, still on my mind but still not done. This holidays my 13yrold daughter is going to help me now that we have a better computer. Yes ticking boxes happens to us all.
There are so many... young women out there being diagnosed with advanced breast cancer. Many of these young women have children still young and in school. It is so tricky raising a family and focusing on wellness with breast cancer. The community can help in so many ways but on the outside we dont often look sick and this is deceptive to the general public.
I would like to see a community kitchen developed based on whole food plant based diet to home deliver meals to those newly diagnosed and ability for cares and friends to come and learn how to prepare healthy meals and juices.
I would so....loved this to be available to me when I am not up to keeping the ball rolling.
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I just love that idea of that small voice. As many small voices we become louder and eventually have a great impact.
When I was 1st diagnosed one of my concerns was my children wouldnt have any photos as I have never organised them. 2 years later, still on my mind but still not done. This holidays my 13yrold daughter is going to help me now that we have a better computer. Yes ticking boxes happens to us all.
There are so many... young women out there being diagnosed with advanced breast cancer. Many of these young women have children still young and in school. It is so tricky raising a family and focusing on wellness with breast cancer. The community can help in so many ways but on the outside we dont often look sick and this is deceptive to the general public.
I would like to see a community kitchen developed based on whole food plant based diet to home deliver meals to those newly diagnosed and ability for cares and friends to come and learn how to prepare healthy meals and juices.
I would so....loved this to be available to me when I am not up to keeping the ball rolling.
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Hi MandaMoo,
Thank you so much for putting into words what it quite often feels like to have abc. I have moments too where I feel like I want to shake people and say do you realise how lucky you are? It's not often I feel this way, but sometimes it can just be an off the cuff remark from somenone and it stirs up these feelings. I don't want to sound judgemental either, but I think it's normal for us to feel these emotions. Your feelings about bucket lists and photographs I can really relate to as well!
We are far too young to be going through this, not that anyone at any age should be going through this. I'm only 37, living with abc, I hope and pray to be with my husband and family for a very long time. It is hard to be young and sorting out the end of your life. I am already putting into place my palliative care plan - which I hope won't be needed for a very long time, funeral plan, making sure our life insurance is all set, wills etc. It does give me peace of mind to know I am putting everything in place and that if I dereriorate rapidly, my husband and children won't have any added stressors.
It is all these things that makes me feel that sometimes life just isn't fair! But then my children do or say something funny, I pull myself into the present and just say to myself, I am here and now, life is precious.
Thank you again xoxo
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Hi everyone, I hear everything that is said. I sometimes question October Awareness month and remind myself that there are a lot of people out there who have not been directly touched by this disease and know NOTHING - they need to know figures/stats and treatment of this horror disease. I figure that if I tell groups of people what the disease is then in the event that they/a friend/family member is unfortunately diagnosed then they might remember some of the info or better still "push" them to get checked. I am trying to word this as to not offend anyone. From my own perspective I live every day wondering "when" but in saying this I Live life to the fullest whilst I can. (I don't like to feel morbid and don't want others who are close to me to feel this way either - yet!). I am very grateful that I don't have to consider chemo/radiation at the moment. I am living well with secondary breast cancer. It scares the hell out of me to think about getting to advanced breast cancer BUT one step at a time is ringing in my head. How did I ever think I would cope with having EBC then secondaries. The will to live is very strong and I will continue to LIVE whilst I can. I support a couple of friends who are living with advanced breast cancer and they "appear" to have a similar outlook about "Living the best life whilst they can". I do "hate" knowing that young women have to endure this disease and pray that the powers to be do find a cure. Amanda do you still go to the Ian Gawlor Foundation? He has just endorsed a product that I am going to try. I will try anything that will keep me well. (I have done loads of research on the product) XLeonie
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Does any one know what a featured post is?
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Does any one know what a featured post is?
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Hi Amanda
Thanks for your honest blog. You have put into words what many of us living with advanced breast cancer feel. I too feel time ticking and realise there are still many things that I would like to get organised for my own peace of mind. I'm not planning on going anywhere for a while but it would make me feel better to know that some things are organised now rather than when I am too sick to be bothered with it all.
It is hard when our children are so young - mine are only 5 and 3 and 1/2. I hate to put them through all this stress at such a young age and try to keep their lives as normal as I can but I can still see the worry in their eyes at times, especially if I am having a bad day and am emotional. I just hope that a cure is found by the time my little girl is grown up. I don't want her to ever go through what we are facing.
Love and light
Amy xxxx
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I have had an interesting day - I did a session at the Gawler foundation and Ian had us contemplating our death - the actual dying. I sobbed all the way through - I still have issues there to deal with quite obviously. Everyone in the group responded differently - how unique we are.
I am busy living though and fulfilling dreams and doing crazy things. I am sad though too as today another from my support group passed away - she had only been to a couple of meetings before becoming very unwell. The third lady since I joined the group early this year. Another girl I know has been diagnosed with a recurrence and is awaiting scans to see if there are secondaries. It seems it never ends.
I am trying to normalise the concept of death in our household so that the children, while they may feel sad about it, will not fear it (as I do) - we had a very interesting dinner discussion this evening and my eldest was in tears but it was a great learning opportunity and a chance for me to reinforce that I am doing everything I can to live well for as long as possible and that my illness is not their fault. I don't know how long I have - I hope it is a long time. I hope there is something to keep me going like I am now for a long time. Who knows what may happen in the meantime. I have to transform the fear.
It is interesting that my post resonated with other ABC girls - perhaps I am not so out there in my thoughts - rollercoaster and crazy as they can be.
Tomorrow I will go to my support group and we will grieve another member, we will support those having a rough time and inspire each other with our zest for life. That's what we do.
To my husband and children - I could never tell you too much how much I love you (even if I am cranky because you take too long to brush your teeth and put your pjs on - that's the kids not hubby!)
A xx
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Thank you for your words.
Love Kathy.
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