I'm having an attack of the sads today. feeling overwhelmed i guess, and pretty anxious about the first chemotherapy session on friday. it feels like today is the last day i have to achieve anything, given that i work wednesday and thursday, and then it's all systems go come friday, when i jump back into carer mode and all else falls by the wayside.
opening the sad place inside of me gives rise to a multitude of sadnesses, small and big, and then all of a sudden i can't even articulate why i'm crying, because it's so many things.
i have so many things i want to get done today, but of course, i'm crying instead!!
we had a win today, with my daughter hearing news that she has won some big award for academic achievement in the face of adversity. she's very excited, and justifiably proud. it all seems a bit futile to me though, as it won't change anything for her. so we'll troop down to sydney later this month to collect the award, and then fly back and present her arm again at the chemo ward for another dose of toxicity which will hopefully stretch the elastic of time that little bit longer.
i am so not looking forward to this next phase. to watching my daughter wither, her hair fall out, her mouth fill with sores, and see her struggle to eat again. i recall watching a friend go through this a few years ago, and how one day i looked at her, struggling with the chemo, and for the first time faced the thought that she could die. the chemo seemed to be killing her. i have so much fear of this dreaded regime. and it's not even as though it offers much hope. there is no prospect of this treatment being curative. the proposed outcome is just that it will give her a bit longer on this mortal coil. and i guess that's why she's doing it.
i don't judge her decision, not one little bit, and i don't know what i would decide if the decision was mine. anyone out there who thinks they would do differently cannot truthfully say this unless they found themselves in exactly the same situation.
on another note, i am feeling incredible gratitude for this new recurrence. weird, i know. but hear me out.
my plans a few months ago were to help my daughter settle in her new life in brisbane, and then hit the road for a long expanse of nothingness, with my two little girls. i was organising my life and my businesses to take some long overdue time out and go travelling with the kids. if all had gone according to plan i would be far, far away from nimbin right now, and my daughter would be starting uni, getting her licence and her first car and beginning her adult life.
it's only now that i am sharing these victories alongside her, that i realise how grateful i feel to be doing so. had she stayed well and moved out, i would not be a part of this. i would not be promenading her through town telling all and sundry that she just got her licence. i would not see her face light up as she talks about uni, or agonises over which car to buy. i would not have been celebrating her friends' birthdays with them.
this is such a special time in the life of any young adult, and society dictates a separation from parents at this time. it is definitely her misfortune to be stuck dependant upon her mother again, but i am so happy to have this window into her life.
i think that's the only silver lining i can find at this time.....
Monday 25 February 2013
Monday 11 February 2013
a brief respite
we're having a good moment.
my daughter has recovered from her latest radiation session and is happily attempting to GAIN some weight....i have to say, coming as i do from 'big boned' stock, that's not a concept i've ever been familiar with!
it was a long haul, this last treatment. the focus of the radiation was on a large tumour, enmeshed in the main airways and blood supply for the left lung. as such, the radiation beams had to pass through her oesophegus to get to their target. on the way through, they damaged the sensitive lining tissue of the oesophegus, causing a severe burn. the effects of radiation therapy usually peak sometime after treatments has finished. in this case, the patient felt the effects about four days after the end of treatment. she went from eating normally one day, to totally unable to swallow the next. even water burned. she went two days without eating or drinking, before attempting to drink milk, mixed with a protein powder, taken through a straw. this worked well for a few days. with her only sustenance coming from about 500ml of milk and fake protein per day, she required rapid rehydration, so we tripped off to nimbin hospital (i love the nurses there! they are so sensitive, and caring) to request a drip.
that's how we managed for about nine days, though for the final couple i don't think she was even getting milk down.....she was also using a lot of pain relief medication. she was pretty miserable, poor love. obviously weak, and just really worn out from pain and lack of ease.
anyway, she predicted the day she would recover from that, and recover she did! it was amazing! from one day to the next it just changed, and she ate three meals that first day. she was funny....she ate such small portions but then complained of feeling like an elephant, she was so full.....!
anyway, so she's now in recovery mode, though suffering now from dental pain from her wisdom teeth (oh, boy, is she getting a fast track on wisdom!) - there really is no rest!
but her spirit is so much lighter.
she starts uni next week in brisbane. this is for her the fulfilment of a life long dream, and you can't wipe the smile off her face! she is only taking one unit, as she will begin chemotherapy soon, in lismore. obviously, this will mean A LOT of travelling between brisbane, lismore and home, but i'm really glad for her to be studying at UQ, which has always been her dream, and also glad that she will be having this treatment in lismore, as she'll be here with me and i can be here for her in the fullest possible way.
so, this really is a good pause for us.....we are all home here together, we all have much to look forward to, we are all feeling reasonably robust, the littlies are back at school, and i even worked a few days in the last week!
i'm sensing that we will need to recognise these times of ease as they come along, and take the opportunity for 'normal' life where and when we find it. i am aware there is a long road ahead and we will all need a lot of stamina to stay on top of things....just thank the goddess for these little moments of goodness!
my daughter has recovered from her latest radiation session and is happily attempting to GAIN some weight....i have to say, coming as i do from 'big boned' stock, that's not a concept i've ever been familiar with!
it was a long haul, this last treatment. the focus of the radiation was on a large tumour, enmeshed in the main airways and blood supply for the left lung. as such, the radiation beams had to pass through her oesophegus to get to their target. on the way through, they damaged the sensitive lining tissue of the oesophegus, causing a severe burn. the effects of radiation therapy usually peak sometime after treatments has finished. in this case, the patient felt the effects about four days after the end of treatment. she went from eating normally one day, to totally unable to swallow the next. even water burned. she went two days without eating or drinking, before attempting to drink milk, mixed with a protein powder, taken through a straw. this worked well for a few days. with her only sustenance coming from about 500ml of milk and fake protein per day, she required rapid rehydration, so we tripped off to nimbin hospital (i love the nurses there! they are so sensitive, and caring) to request a drip.
that's how we managed for about nine days, though for the final couple i don't think she was even getting milk down.....she was also using a lot of pain relief medication. she was pretty miserable, poor love. obviously weak, and just really worn out from pain and lack of ease.
anyway, she predicted the day she would recover from that, and recover she did! it was amazing! from one day to the next it just changed, and she ate three meals that first day. she was funny....she ate such small portions but then complained of feeling like an elephant, she was so full.....!
anyway, so she's now in recovery mode, though suffering now from dental pain from her wisdom teeth (oh, boy, is she getting a fast track on wisdom!) - there really is no rest!
but her spirit is so much lighter.
she starts uni next week in brisbane. this is for her the fulfilment of a life long dream, and you can't wipe the smile off her face! she is only taking one unit, as she will begin chemotherapy soon, in lismore. obviously, this will mean A LOT of travelling between brisbane, lismore and home, but i'm really glad for her to be studying at UQ, which has always been her dream, and also glad that she will be having this treatment in lismore, as she'll be here with me and i can be here for her in the fullest possible way.
so, this really is a good pause for us.....we are all home here together, we all have much to look forward to, we are all feeling reasonably robust, the littlies are back at school, and i even worked a few days in the last week!
i'm sensing that we will need to recognise these times of ease as they come along, and take the opportunity for 'normal' life where and when we find it. i am aware there is a long road ahead and we will all need a lot of stamina to stay on top of things....just thank the goddess for these little moments of goodness!
Friday 1 February 2013
drumming ethics 101
I learned something very profound tonight, and it is this:
As you cease to apologise for being who you are, so are you freed from the expectation for others to apologise for being themselves, too. It also works in reverse.
I am forever thankful for the streets of Nimbin, my playground in this sometimes harsh school of life.
I met these two guys on the street tonight, having their virgin Friday night drumming experience. I chatted to them for a while. I guess I helped them to feel comfortable, in a situation in which they 'didn't know how to act' (their words, not mine).
They told me that I was the first person to be nice to them, who didn't try to sell them drugs. They thanked me, they were a bit overwhelming in their gratitude, actually! And I wondered 'why would I bother to be other than open and welcoming to them?'
I realised that I simply don't have time to create discomfort for myself and others. There is enough reason for discomfort imposed upon me by the universe, why would I consciously add to it, if I have a choice to do otherwise.
I then releived myself of the burden of needing to apologise for who I am.
Strangely, as I looked around, I realised that I was free to simply observe others being who they are, and not need them to be any different to how they are, either.
We really are all perfect. Understanding the fact that we are so complex, and multifaceted (as is EVERYTHING in the universe!) allows me to accept my failings, my deficiencies, and, for this moment, I am releived of guilt.
aahhhh......I feel so light.
As you cease to apologise for being who you are, so are you freed from the expectation for others to apologise for being themselves, too. It also works in reverse.
I am forever thankful for the streets of Nimbin, my playground in this sometimes harsh school of life.
I met these two guys on the street tonight, having their virgin Friday night drumming experience. I chatted to them for a while. I guess I helped them to feel comfortable, in a situation in which they 'didn't know how to act' (their words, not mine).
They told me that I was the first person to be nice to them, who didn't try to sell them drugs. They thanked me, they were a bit overwhelming in their gratitude, actually! And I wondered 'why would I bother to be other than open and welcoming to them?'
I realised that I simply don't have time to create discomfort for myself and others. There is enough reason for discomfort imposed upon me by the universe, why would I consciously add to it, if I have a choice to do otherwise.
I then releived myself of the burden of needing to apologise for who I am.
Strangely, as I looked around, I realised that I was free to simply observe others being who they are, and not need them to be any different to how they are, either.
We really are all perfect. Understanding the fact that we are so complex, and multifaceted (as is EVERYTHING in the universe!) allows me to accept my failings, my deficiencies, and, for this moment, I am releived of guilt.
aahhhh......I feel so light.
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