You know, I hate waiting.
About 6 months ago a friend sent me an awesome little graphic and it said "Why must patience be a virtue? Why can't hurry the f*** up be a virtue?"
And it is so the story of my being! I am NOT a patient person!
I have never been good at sitting around twiddling my thumbs and waiting on someone else to make decisions, I much prefer to just decide and get on with things.
I hate waiting around for answers... and more than that, I hate waiting for results.
In the last 4 years, since shortly before Nicola's birth, I have done a lot of waiting. I have been waiting on other people, waiting for answers, waiting for results, waiting for SOMETHING... I have done so much waiting I have lost track of the hours I have spent whiling away in waiting rooms, waiting for phone calls, waiting for times and dates, waiting for answers...
But none more so than in the last 6 months. I think all I have done in the last 6 months is wait.
I keep waiting and waiting... but it seems that the more I wait, the less I like what I hear... and each wait is growing successively agonizing...
And now, here, tonight, I am waiting again...
Waiting for next week... for a teleconference that will be set up at 'some time' to allow us to talk to Nicola's doctors in Brisbane without actually having to fly down there... so hopefully they can make a decision about how we proceed and what we do next.
For the last 10 days or so we have seen a noticeable decline in Nicola's well being. In general her health seems to be going backward. Her hemoglobin levels are not remaining high for anywhere near as long as they had previously, she had her last transfusion 4 weeks ago and needs another one again now already... she is neutropenic for the first time in six months and she seems to be wanting to sleep a lot.
But beyond that, her tummy is very swollen and distended again, and there is a soft protrusion around the area of her pelvis, about where the tumor is suspected to be. Her pain levels have deteriorated significantly and even an increase in her pain medications has only seen a slight improvement in her happiness... and her comfort levels have significantly decreased.
The concern?
That her tumor is growing, despite still being on treatment.
While we are trying so hard to be positive, it is proving to be incredibly difficult. While my heart is screaming at me that everything will be OK, there is that tiny little voice in the back of my mind screaming that it's all bad... we haven't had much luck so far in this journey, we seem to be coping one shocking blow after another, so I don't know that I really truly expect this one to be much different.
It is starting to feel like for every little tip toe forward we take, we are sent on a flying leap backward.
I feel lost.
I feel confused.
I feel so very, very hurt...
I don't understand why this is happening.
I don't understand why a beautiful, sweet, innocent little girl who has already suffered so much in her little life has to continue to suffer like this.
I feel so very, very angry that this is happening at all!
I really, really just don't understand... and I don't like it.
I want to go to bed, to go to sleep, to actually get some real sleep, and wake up to find that the last 7 months have been a long, horrible dream and everything is back to the way it was...
Instead I am sitting here, trying to juggle a thousand emotions and thoughts and make sense of a reality that seems to be crumbling into a horrid mess at a rate that is so much faster than we had ever thought would be possible.
We are trying so hard to hope for the best... but it seems to be getting harder and harder with every passing day.
Jumat, 18 Mei 2012
Selasa, 15 Mei 2012
Split Side Maxi
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| Skirt- c/o SheInside. Jumper- Vero Moda. Bag- Zara . Shoes- Topshop. Necklace- Topshop |
Hello Everyone!
Sorry for the lack of post this weekend, the weather was pretty abominable but im back today with this pretty skirt from SheInside.
Id never come across the site before but it has some really cute things and the delivery is really good too! Whats more, SheInside are offering readers of Nicola Claire a 20% discount until October 30th by using the code Nicola20 at the checkout J
Im sorry, im a really bad influence I know ! Hope you’ve been having a nice week so far J
Nic
xxxx
Kamis, 10 Mei 2012
And So I Write...
Someone asked me recently why it is that I usually only blog when I have sadness to talk about.
I guess the main reason is because I blog as a way to release my emotions.
I only have a couple of real life friends who I can talk to, and none of them are really 'local' so most of our conversations are via phone, Facebook or email.
I can't really talk to my family, not properly. A lot of the time I feel the need to shield them from the reality that is our life, so they tend to get a readers digest version of everything that is going on.
My husband is wonderful, he has become so supportive and is generally right there with a hug when I am down, but even still, there are a lot of things that we don't really 'talk' about. I think there is this void between us where a lot of unsaid thoughts and feelings kind of disappear to. They drift into this void, and even though really we both know what the other is thinking and kind of understand the feelings, it remains unsaid for fear that vocalising it will make it really real... once something is said, it's out in the open and it can't be taken back.
So other than that... I blog.
For the Harry Potter fans among us, this blog is basically my pensieve. I take thoughts and emotions from my mind, I process them and I try to deal with them by writing them down... so I can go back later and reflect upon them.
Why I share them with the rest of the world... well... I guess I don't really know. I am not really sure how far Nicola's story has spread or how many lives, apart from ours, that she has touched... but I guess I just don't want to keep her story to myself. I want to share my beautiful girl with the world... and I guess it's comforting in some way to know that 'someone' is 'listening'... even if I don't know them, can't see or touch them, just to know that there is someone that cares enough to take the time to read what I write. Whether it be for me or for Nicola... 'someone' is there.
Most of the time, living this life is very isolating. I spend a lot of time feeling very much alone. We just don't seem to slot into any little box. Unlike most children with additional needs, Nicola has a mix of physical, medical and behavioral issues to contend with. Unlike most children with additional needs, Nicola now has the added complication of cancer. Unlike most children with cancer, Nicola has the added complication of a life time of incredibly complex additional needs.
We seem to have ended up chivied off to the side into this little niche all by ourselves... and it's a very lonely place to be...
Most of my 'life' gets sacrificed in the names of my children... I can't remember the last time I went to the hairdresser, my nails look wretched, I haven't bought new clothes in eons, my make up is so underused that my mascara expired before I even removed the plastic wrapper! The last time my husband and I went out for dinner or to the movies or had any kind of alone couple time was so long ago it was before we even moved back to Townsville and we've been here for over two years... we basically give up our own luxuries to ensure that our children have what they need to keep them going... so without everything else, all I have left is my thoughts...
And so I write.
I have dozens and dozens of posts that remain unpublished and most likely always will remain unpublished, but for the most part, this is my outlet, my release.
I try to write as often as I can... but mostly I write because thoughts have been built up so much that I need to clear some out...
And so I write.
:)
I guess the main reason is because I blog as a way to release my emotions.
I only have a couple of real life friends who I can talk to, and none of them are really 'local' so most of our conversations are via phone, Facebook or email.
I can't really talk to my family, not properly. A lot of the time I feel the need to shield them from the reality that is our life, so they tend to get a readers digest version of everything that is going on.
My husband is wonderful, he has become so supportive and is generally right there with a hug when I am down, but even still, there are a lot of things that we don't really 'talk' about. I think there is this void between us where a lot of unsaid thoughts and feelings kind of disappear to. They drift into this void, and even though really we both know what the other is thinking and kind of understand the feelings, it remains unsaid for fear that vocalising it will make it really real... once something is said, it's out in the open and it can't be taken back.
So other than that... I blog.
For the Harry Potter fans among us, this blog is basically my pensieve. I take thoughts and emotions from my mind, I process them and I try to deal with them by writing them down... so I can go back later and reflect upon them.
Why I share them with the rest of the world... well... I guess I don't really know. I am not really sure how far Nicola's story has spread or how many lives, apart from ours, that she has touched... but I guess I just don't want to keep her story to myself. I want to share my beautiful girl with the world... and I guess it's comforting in some way to know that 'someone' is 'listening'... even if I don't know them, can't see or touch them, just to know that there is someone that cares enough to take the time to read what I write. Whether it be for me or for Nicola... 'someone' is there.
Most of the time, living this life is very isolating. I spend a lot of time feeling very much alone. We just don't seem to slot into any little box. Unlike most children with additional needs, Nicola has a mix of physical, medical and behavioral issues to contend with. Unlike most children with additional needs, Nicola now has the added complication of cancer. Unlike most children with cancer, Nicola has the added complication of a life time of incredibly complex additional needs.
We seem to have ended up chivied off to the side into this little niche all by ourselves... and it's a very lonely place to be...
Most of my 'life' gets sacrificed in the names of my children... I can't remember the last time I went to the hairdresser, my nails look wretched, I haven't bought new clothes in eons, my make up is so underused that my mascara expired before I even removed the plastic wrapper! The last time my husband and I went out for dinner or to the movies or had any kind of alone couple time was so long ago it was before we even moved back to Townsville and we've been here for over two years... we basically give up our own luxuries to ensure that our children have what they need to keep them going... so without everything else, all I have left is my thoughts...
And so I write.
I have dozens and dozens of posts that remain unpublished and most likely always will remain unpublished, but for the most part, this is my outlet, my release.
I try to write as often as I can... but mostly I write because thoughts have been built up so much that I need to clear some out...
And so I write.
:)
Rabu, 09 Mei 2012
Rainy
 |
| Jacket- Topshop. Trousers- Zara. Bag- Zara. Necklace- Topshop. Shoes- Topshop. Hat- Topman |
Hello guys,
This is what i wore yesterday, i quickly managed to get a few snaps for you in the rain! I love these slouchy trousers from Zara, ive been wearing them a lot recently they look really cute dressed up too!
As promised here are a list of some potential ball / prom dresses that i picked out. These are all ones that i like personally so i hope you guys can find one or two you like out of these!
1. River Island- Beige twist neck maxi dress.
2.Zara- Sequinned dress with opening
3.Miss Selfridge- Silver Shimmer dress
4. Topshop- Clean t-shirt maxi dress
5. ASOS- Floral Bandeau Dress
6. Karen Millen- Pansy Print Pencil Dress
7. River Island- Chiffon side dress (black) (grey)
8. All Saints- Rose Trellis mini
9.Reverse- Cut-out dress with harness
10.Aqua- Kimono Sequin Maxi Dress
11. ASOS- Midi dress in Mex Tex Sequin
12. Hybrid- Pencil Dress with Plunge Neckline
13. Aqua- Dejavu jersey drape dress
14. ASOS- Embellished dress with open back
15. Aqua- Starbright Asymmetric open back maxi
16.ASOS- Grey Line by Hussein Maxi
17. Aqua- Starbright open back midi
18. All Saints- Native dress
Here are some other brands that do some pretty dresses that you might also like:
Winter Kate at ASOS
Opulence at Topshop
Forever Unique at River Island
Hope this helps!
Nic
xxxxx
Minggu, 06 Mei 2012
Mirrored Islands
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| Dress- Motel Hi Guys! Just a quick post to show you this pretty mirrored island dress i got from Motel the other week. I couldnt actually see it on the Motel website but you can still find it on ASOS. Hope you've all got some nice things planned for the bank holiday tomorrow! Im off out for some Sunday afternoon cocktails now :) yay. Nic xxxx |
Kamis, 03 Mei 2012
Broken Hearted
I have just spent forever sitting here, staring at a blank white screen, trying to work out what I could write...
How do I take all of these thoughts and emotions that are rampaging through my head and try to put them down in a way that they are understandable by other people...
And I guess... I guess really I just need to write.
Do you realise that we have been on this journey for 6 months?
That's, like, half a year!
Just over 6 months ago my life was normal, and then it all changed.
We discovered that our beautiful baby girl had cancer.
Three months ago I sat here and I cried as I wrote that the first three months of chemo had been unsuccessful.
All our hopes were pinned on a six week long intense radiation program that was supposed to light our way to a brighter future.
Monday Nicola had her MRI and CT scan. Today we got the results.
The radiation failed.
The scans show virtually no response in either the primary tumor or the metastasis in her lungs. 6 months after we started this journey, we are still where we were when we started.
We have not gained any ground.
We have not lost, but we have not gained.
Today we had a frank discussion with our daughter's oncologist.
She has 12 weeks of chemotherapy left in this cycle at which point we stop.
There is a chance that the masses that are being seen on the scans are dead tissue, but her oncologist believes that there is an 80% chance that once we stop chemotherapy the cancer will start growing again.
So this is what we have to look forward to.
In 12 weeks we stop the only drugs that seem to be doing anything to keep this cancer at bay.
We start a series of scans to monitor the progress of the masses that are spread so profusely amongst her abdomen and lungs.
At the first sign that there is new growth, which they are anticipating we will most likely see within 6 - 8 weeks at most, we need to stop and consider what we do next, if we do anything at all.
There is the very very real (and most likely) possibility that this cancer that is attacking my beautiful precious daughter is untreatable.
There is the very real possibility that in a little over 12 weeks, we will have to make the decision as to whether or not we continue treatment of any sort or we let this demon take it's course...
There is the very real possibility that they are going to come back to us and ask us to decide what, if anything, happens next.
How do I make those decisions?
I know I still have 12 weeks to go, but given that everything so far has been so totally unsuccessful, I can't help but feel like we are just taking steps closer, day by day, to the hardest decisions that I will ever have to make as a parent.
How do I deal with this?
I have gotten through the last 6 months by getting up every morning and smiling. As long as I smile everyone else thinks I'm ok, and that has been just fine... but it's getting harder and harder to smile... in fact, tonight I don't seem to be able to do much more than just cry.
There is so much I want to say, so many emotions I want to get out, so many thoughts that are fighting for air time... but I keep coming back to my Princess Nicola...
My baby...
My beautiful, precious princess...
and I cry...
because life is just too unfair.
:'(
How do I take all of these thoughts and emotions that are rampaging through my head and try to put them down in a way that they are understandable by other people...
And I guess... I guess really I just need to write.
Do you realise that we have been on this journey for 6 months?
That's, like, half a year!
Just over 6 months ago my life was normal, and then it all changed.
We discovered that our beautiful baby girl had cancer.
Three months ago I sat here and I cried as I wrote that the first three months of chemo had been unsuccessful.
All our hopes were pinned on a six week long intense radiation program that was supposed to light our way to a brighter future.
Monday Nicola had her MRI and CT scan. Today we got the results.
The radiation failed.
The scans show virtually no response in either the primary tumor or the metastasis in her lungs. 6 months after we started this journey, we are still where we were when we started.
We have not gained any ground.
We have not lost, but we have not gained.
Today we had a frank discussion with our daughter's oncologist.
She has 12 weeks of chemotherapy left in this cycle at which point we stop.
There is a chance that the masses that are being seen on the scans are dead tissue, but her oncologist believes that there is an 80% chance that once we stop chemotherapy the cancer will start growing again.
So this is what we have to look forward to.
In 12 weeks we stop the only drugs that seem to be doing anything to keep this cancer at bay.
We start a series of scans to monitor the progress of the masses that are spread so profusely amongst her abdomen and lungs.
At the first sign that there is new growth, which they are anticipating we will most likely see within 6 - 8 weeks at most, we need to stop and consider what we do next, if we do anything at all.
There is the very very real (and most likely) possibility that this cancer that is attacking my beautiful precious daughter is untreatable.
There is the very real possibility that in a little over 12 weeks, we will have to make the decision as to whether or not we continue treatment of any sort or we let this demon take it's course...
There is the very real possibility that they are going to come back to us and ask us to decide what, if anything, happens next.
How do I make those decisions?
I know I still have 12 weeks to go, but given that everything so far has been so totally unsuccessful, I can't help but feel like we are just taking steps closer, day by day, to the hardest decisions that I will ever have to make as a parent.
How do I deal with this?
I have gotten through the last 6 months by getting up every morning and smiling. As long as I smile everyone else thinks I'm ok, and that has been just fine... but it's getting harder and harder to smile... in fact, tonight I don't seem to be able to do much more than just cry.
There is so much I want to say, so many emotions I want to get out, so many thoughts that are fighting for air time... but I keep coming back to my Princess Nicola...
My baby...
My beautiful, precious princess...
and I cry...
because life is just too unfair.
:'(
Rabu, 02 Mei 2012
Jeans and Jackets
 |
| Jacket- Topshop. Jeans- Topshop. Top c/o- ChinaDoll Boutique. Bag- Zara. Shoes- RiverIsland. Beanie- ASOS |
So this week ive been mostly wearing jeans and jackets because the weather has been a little bit uninspiring!
Its been so rainy and bleugh recently, so to make myself feel better i decided to take it upon myself to write you this post from my sauna where its feeling pretty tropical right now i have to say.
Im not too sure if i should really have my laptop in here but that's a sacrifice i am going to take and deal with the consequences!
Ive been getting a lot of emails recently asking about ball/prom/graduation dresses so I'm going to have a scan over the next couple of days and come back with some picks for you all! Watch this space.
Hope you are all having a nice week:)
Nic
xxxx
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