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
