Monday, October 31, 2011

Who is this person standing before me?

I'm having a moment. Just a little one.......promise.

We had a pretty relaxing weekend which was total awesomeness. Bought some Levis jeans for $29 at Savemart. OH yes!
New trainers originally $190 for $49 for my 'no driving' daily walking expeditions. Wicked!

Yep, a good weekend. Even the grocery bill was cheaper. Go figure! We relaxed, mooched, hung out together. The nice stuff.

But today I feel somewhat .........deflated. Disappointed I guess. Every now and again my brain tumour saga catches up with me and slaps me clean around the ears.
I have been on a lowish dose of steroids for the past month since my recent surgery. They are awful actually. I don't like them very much. BUT, they seem to have helped my eyes and head pressure. I feel I can function almost normally on them.

Catch 22 though. While the eyesight and 'headiness' feeling improving is a positive. I really struggle with the transformation my body is going through. Unfortunately, and embarrassingly this is where I become rather shallow in character. I miss the old me. The healthy, relatively fit, active, slim me. Ok so I've never been a sports woman, but a healthy 35year old and proud of it.

The steroids are making my face a little swollen and rounder. A smattering of acne. My hair is still a bit irregular from having surgery patches shaved. I can't sleep very well. I'm often up at 3 or 4am drinking sleepy tea or hot milk. I have an insatiable appetite. Like I've never had before (other than when I was pregnant). A drug induced (and eating at all hours of the day) belly is appearing, despite my 80 tummy crunches I try each day and regular walking. I feel I'm losing the battle, despite my efforts. It's all vanity, I realise this. I know it's more important to be alive and functioning, I just miss me!

My lovely husband is very good at saying all the right things. He loves me, the whole me. The person whom he married and the person whom he shares everything with. But I'm a girl. I want to be attractive for my husband. I want to be healthy and attractive for me too! It's a strange feeling to be changing beyond my control.

Some of it may be within my control. I'm trying a lower dose. But so far my symptoms eg the poor eyesight are returning. Drat.
I'm hoping it may plateau and become bearable, liveable. But I guess, if I have to increase them again I will.
I keep active. Even if I don't see the results outwardly, I'm sure it's good for my overall health and well being to keep moving and my heart pumping. That I can do and will continue.

I'm a little uncomfortable at the thought of the next time I see my friends and family again who reside in Canterbury. I don't really want to look like I've been on medications for months on end.
Oh I know........they love won't matter..........they will completely understand........and support me anyway. Yep, I know all this.

But I'm still having a moment.

Jaz xx

Friday, October 28, 2011

Hey guess what?

I have things in my life other than managing a brain tumour! Yes I do!

I love cooking with apples. Well all fruit really, but especially apples.

My mum and her best friend (who have both sadly passed away in the past five years) loved and shared the most delicious apple cake recipe.
AND IT'S EASY!!!! Because these too amazing women are not in my life anymore, their recipe, written with love and passed to me is especially precious.

Yesterday I made the cake for Mark to take to his work today. His work mates are benefiting from my 'recovery boredom' quite a bit lately. I smothered it with maple syrup butter icing. OMG YUM!!!

Here tis if you want to try it:

Easy Spiced Apple Cake
Melt 125 grams butter
Grate 2 medium size apple, mix in 1 cup brown sugar and an egg. Mix!!!

Dry ingredients:
1 & half cups flour
1 tspn baking soda
1 tspn cinnamon
1 tspn cloves
1 tspn mixed spice
1/2 tspn salt.

Combine sifted dry ingredients with the wet apple mixture. Put into a lined, greased 20cm round cake tin.
If not icing then add a topping before baking:
25g melted butter
1/2 cup rolled oats
1/4 cup sugar
tspn mixed spice

Bake 30 minutes at 180

ps Yesterday I also made rhubarb muffins which I had never made before. Have you? They were amazing and didn't even have butter in them. Wahooo!!!
Jaz xx

Thursday, October 27, 2011

Ah well, sometimes it happens (sigh)

My appointment came and went yesterday. Unfortunately taken by some poor critical care patient. I dearly hope they are ok.

Of course, I am a bit dissapointed. It means rescheduling of several appointments, a shuffling domino effect. More coaching of oneself (MRI's are not a pleasant experience and it does take me a bit of focused calmness and preparation on the day).

But somebody else got the urgent care they needed. I'd want that for myself and my family if necessary.

I'm still glad I put it out there into blogland though. It felt ok asking for your help. It was nice knowing that others are supporting me.

It's cool.

You people are cool.

Total coolness.

Thanks. Keep it comng. Lots of love your way too.

Jaz xx

Tuesday, October 25, 2011

Can I ask you all a favour?

I've got a big week this week. Two hospital appointments. One for an Brain MRI an the other with my Opthamologist to reassess my eyes after my most recent surgical procedure.

I feel ok about it all. I know it needs to be done. But of course it still brings up bubbling emotions and 'what if questions' about my future.

I'm also feeling more recovered from the latest surgery. It was a month ago today.

There are still issues and I think the fluid levels in my head are still not quite right as I feel a little off balance, slight head pressure and fuzzy eyes. But it is so much better than it was.
I dont know the effects that anasthetic has on the body but I'm sure it takes a while to recover from that as well. (I stopped any online research a LONG time ago. Too many horror stories and dread on there for me to cope with!!).

Once again the Spiriulina and Antioxident supplements are helping get me through. Wonderful stuff.
Unfortunately, I have also been on steroids which have unpleasant side effects; insomnia, crazy hunger, anxiety, weight gain, round face, acne (the list goes on and on). But I am this week weaning myself off them. Yippee!
Hopefully the symptoms don't return so I can remain off them for a loooong time.

So anyway, the favour I mentioned I mentioned in my title. I hate asking for help. I'm terrible at it. Up until this diagnosis of my brain tumour I was an independent person in control of my life and family. I liked it that way too.
But I have had to do it and accept it a huge amount this year. I am extremely grateful for the help we have received too!!

I'm not very religious, but I am a spiritual person. I believe in the power of prayer and collective love and positivitiy. So will you help me out???

Tomorrow; Wednesday is my MRI. Can you send me some prayer and positive thought?? I won't have anything to report. They just do the scan and then I'll have to wait few weeks for a follow up appointment to discuss results, but no matter.
You never know, it may help. It certainly helps knowing my friends, family and readers are out there.

It lifts me and keeps me going.
If nothing else, that is more than enough.

Cheers friends
Jaz xx

Monday, October 24, 2011

Our Boys Won

Congrats to the Boys in Black.

I think the whole nation is smiling with you this morning.

Jaz :-)

Monday, October 17, 2011

Our little get away.

From Whangaparaoa to Whangamata we quietly idled along at a leisurely pace to our destination for the evening. Traveling with Phoebe we made a few little breaks and pit stops along the way. But only having one child to organise made it pretty easy and not at all stressful.

With my spirulina to keep me going, I made it ok and Mark and I had a great time together.

Soy fluffy in Thames

View in Tairua

Surf at Hot Water Beach Coromandel

Hot Water Beach

Happiness in ice cream

Enormous, beautiful native trees

Whangamata Cafe meal. Phoebe discovers a new passion for garlic aioli dip. I totally understand the love affair.

The motel

Whangamata beach with the sun setting behind us.

  1. Karangahake gold mine

Karaangahake gold mine river and swing bridges.


Phoebe and her kazoo

Evidence of the in flight entertainment. LOL

A lovely weekend had by all. Even little breaks are truly worth it.

Jaz xx

Friday, October 14, 2011

Brain surgery, parties, children and a night away.

Just what the doctor ordered.

In that sequential order as well.

I have, if you read Mark's you will know that my head decided not to cope with a gradual build up of fluid and I had a rather quick surgical procedure called a Ventriculostomy. Very often a shunt is put into people's ventricles when they suffer from hydrocephalus (fluid build up). Instead the surgeon decided to insert a snazzy camera and then pierce a hole in the base of the ventricle to allow drainage. It allows slow, gradual drainage and balancing of the fluid levels. I also have a flash little Rickham reservoir placed just under the skin of the entry wound through which they can actually simply enter a needle to remove extra fluid if it is so needed. Flash huh?! It's small, and I can only feel a slight bump under the skin and shaven hair. Yep. Another hairstyle emergency (sigh). Although kindly they just took off a little bit so I have modified my fringe and parting to accommodate. (You can't really tell in the photo but they used a new
iodine solution which was bright pink!! My entire head and pillow was very 'punk' looking for a few days. Kind of cool. Thankfully it has almost all gone as I write this today...but I kind of liked it for a while).
The recovery has felt slow. But then I'm not all the patient with this process anymore. Considering I have had my head cut into, I really should be more realistic. I forget that I can't always bounce back straight away. I didn't cope so well initially. It all came as a shock. Suddenly I was being admitted to the same ward that I had spent so many sleepless nights back in January. Back to the midnightly blood-tests, Heparin jabs in the belly to avoid blood clots and the two hourly waking to check that I'm Neurologically 'with it'. It brought back a lot of the fear and trauma of January/Feb I must admit. I recognised the sounds, smells and many of the nurses. It was lonely and scary. But.........only a week this time and then Mark took me home and cooked and cared for me as only he wonderfully can.

I have recovered at home well. Still struggling with poor eyesight, but battling on despite. Hopefully as the recovery process completes so will the recovery of my sight. I can't drive again. A standard 'stand down' period is required after any brain surgery. I am feeling a little housebound, but at least I feel well. I have got a crappy sinus infection which antibiotics are dealing with which makes my head feel spaced out. I look forward to the day when my head feels normal again. A happy day that will be.

I have an onslaught of hospital appointments coming up over the next two months. I hope the MRI in two weeks reveals some more die off of this tumour of mine. I have finished with it. I'm just not sure yet if it has finished with me. Most importantly, I need to make sure it doesn't actually 'finish' me.
I'm tired of being scared and sad. I want laughter again.

We had a little of this recently. Beautiful Phoebe turned three and her love of pirates inspired me to bake a Pirate ship cake. Just a little one, but she seemed pleased. We had Nana and my brother visiting from Christchurch which made the birthday weekend a bit more special for us all.
Notice how the candle on right of pic is actually burning the ship's mast. Giggle!

Plenty of pirate loot!

She proudly took a little cake to preschool as well and shared birthday news. Gosh how they grow up huh!! Before I know it my baby will be starting school. Good golly!

My kids have grown to love spinach. Just on the plate, no dressings, maybe a few other salad bits on an occasion. I am am a proud mum. Mark should be a proud dad about this because it is his cooking and perseverance by simply putting it on their plates and expecting it to be eaten................they now just do!! (Although our carnivore Phoebe had only attempted one leaf, but baby steps!!)
Just a little spinach with your pasta anyone??

School Holidays
We have done something a little out of the ordinary this week. We sent our two eldest children; Caitlin and Molly off on a flight to stay with their Aunty and Uncle in Canterbury. It felt very odd sending them off as unaccompanied minors. But they coped extremely well and are having a lovely time.

It has been strange and VERY quiet in the house, especially on the first night and morning. Phoebe was missing her sisters by bath-time of second night. But Mark and I are making the most of having a one child weekend. We plan to drive to Whangamata for one night of dining out and then chilling in a motel room all together. Not much, but we are excited anyway. Since living up here away from our extended family we haven't had these opportunities, so we are grabbing it! I'm still feel a little fatigued and will be traveling with a swag of medications in my toilet bag. But I guess you just have to grab life by the chin and just do stuff anyway sometimes huh!
I'll update you soon on my night away with my gorgeous man and big three year old!

Well. It's nice to be blogging again. I'm glad you're still out there. Thanks for hanging around for me.
Have a lovely weekend yourself.
Jaz xx

Sunday, October 9, 2011


Drat, damn and a few other expletives.
But I survived.
I'll be back.
In time.
Jaz xx


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