What to feed the troops!?!

Hey now this has been done before. We've made sandwiches and all sorts in crazy shapes. Even the corny old smiley face plate version. But tonight Mark found the teeny tiny shape cutters and endeavoured to get Phoebe to eat more than a few crumbs.

Out of all our children, Phoebe is the most reluctant to eat anything that isn't covered with sugar.

The others actually prefer to eat veges and meat..........but not the Pheeb-meister!!

Pheeb-meister

Molly-meister

Edible teddy bears, stars and hearts.

I must admit, it wasn't all eaten. But we're pretty sure some vitamins and minerals were consumed along the way.

We will not be defeated !

Jaz xx

Thankful Thursday: I'm over half way!!!!!!

It's true, yesterday was hump day, the half way point through Radiotherapy. YAHOOO!

I still have the dry mouth, drinking lots. A bit of brain fog, especially as the each week progresses. Fatigue, not unusual and expected. No headaches or nausea, which means my brain doesn't need steroids just yet, so I'm really pleased. My body is keeping it together.

I am however, and this wasn't at all unexpected, losing some hair. I had my hair cut a lot shorter so as to lessen the impact (for myself and others) before the therapy started. The hair loss is isolated to where the beams enter the scalp, so it will be patchy across the back of my head. My hairdresser, bless her, is confident though. She commented that if anyone had to have beams of radiation through their head, it's my head of hair that will survive. I have my birth father to thank for his DNA here. Of course, my mother will have contributed, but I've seen the 70's photos of luscious, thick, long dark hair he sported. I'm really grateful to have such a scalp load of the thick stuff myself.

When I run my fingers through it, it seems like loads is coming away. So much, Mark put the first load out into a tree for the birds. I'm proud to be supporting the building of local bird real-estate!!

I had been so brave and stoic up until then. Every time the docs mentioned the hair loss I just thought it was the least of my worries....and my head knows it is. But my heart............well that's another thing altogether.

So this Thursday I'm thankful for getting to the half way point, bearing up to the side effects, DNA, hair and the birds. All an important part of my life this week.

Jaz

xx

It's a kids life!

I love Mondays. The Boomtown Rats were soooo wrong.

Yesterday, thanks to Her Royal Highness Lizzie Windsor, I got to spend the day with all my kids. Thank you Ma'am.

We didn't do anything particularly interesting. Went through bedrooms and played with toys. Perfect!

Little Phoebe decided to do a photo-shoot of her favourite things. I was quite impressed at her patience and ability to 'hold still'.

Cash register close up

Monkey....I swear...none were harmed in the making of this!!

Mummy's knees and some bedroom floor mess

Books on shelf.....hee hee hee

Her feet ....tee hee hee......tooooo cute

A favourite book....... and pink knee

A carefully positioned pony.

Loving the simplicity of what makes a child happy.

Brilliant.

I also love that Caitlin saw this sunrise and took these photos from an upstairs window.

Yay for kids who appreciate the stuff around them :-)

And to finish, a funny story to tell you about Phoebe and learning to tell the difference between boys and girls. It began as early morning pillow talk, Phoebe lying in between Mark and I, far too early to be considered civilised.

Mark: "Phoebe.......is Daddy a girl or boy?"

Phoebe: "Daddy's a boy"

Mark: "And Mum?"

Phoebe: "Girl!"

Mark: "Is Molly a girl or boy?"

Phoebe: "Molly's a girl and Caitlin's a girl"

Mark: "So what about ****.........is **** a boy or girl? (Boy's name from preschool protected)

Phoebe (in a snarky voice) ****'s a grumpy old troll!!!

Yep she's got it sussed at an early age, no boys will be pushing her around this playground it seems.

Jaz

xx

Thankful Thursday

On the home-front:

Winter is here and little Phoebe has the most awful head and chest cold. Unusual, as she rarely gets ill. Accident prone, sure, but her immunity is amazing. This means Mark has had to take a few extra days off work to help supervise her. It's tough juggling family and job, but he's a star.

I couldn't resist getting the camera out this morning when I wandered into the dining room to see her golden locks bending over some playdough "lollies".

Gee, I wish I looked that good when I had caught a cold. The amount of green mucus one little head can produce is disgusting!!!! But she still looked gorgeously windswept, straight out of bed.

Caitlin is trucking along at school. She had reached the age of endless research projects, (which as both a Mum and teacher I sometimes object to), however the teacher's expectations are clearly communicated and my dear little Caitlin is amazingly motivated.

Molly is soooooo happy it is winter. Winter means more opportunities for DVD watching!!! She is mad on visual technology and I can imagine her turning it into a vocation in the future.

She very proudly announced receiving a certificate for trying hard in all areas of school. Way to go Molly!!

The medical front:

I have consented to receiving Radiotherapy on this brain tumour of mine. In fact I have successfully completed 9/27 days!!

The preparation stage:

This leg of the journey began with a plaster cast and then a plastic vacuum formed "shell" of my face and head made over two days. It's ok though. The shell does not cover your mouth or nose, so I never feel claustraphobic. I do however look like I'm auditioning for a part in a sci-fi movie.

7- 10 days were then spent planning the exact positioning and number of beams to be used.

This is TRIPLE checked (thank goodness, very reassuring).

CT scan and photos are taken and layers are built up on computer with my most current MRI images. Once again, very thorough. They want to target this tumour without causing too much unnessesary damage to the rest of my brain.

Just in case any of you out there ever need to know, you lie down on the machine, the head shell is placed over your face and locked onto the bed. The machine then whirrs around your head into the preprogrammed positions. It takes approx ten minutes. (Which can sometimes make the two hours travelling even more of a drag). But you do what is needed to get and stay well.

Day one of treatment arrived. I felt a little apprehensive but at least familiar with the surroundings. Mark found it a great deal harder. He was allowed to see inside the room, the machine, me being locked into the mask and then could watch on tv screen while the treatment commenced. He said it made him feel helpless and he just wanted to snatch me out of the head "shell" and run. I must agree. If I thought that was a realistic option I'd be right there beside him with my running shoes on.

At the end of week one the only real side effect was a dry mouth. A normal reaction to receiving radiation to your brain. Napping daily is important to recharge. I also hit the cross trainer for a gentle 1km stroll when I can as I find the traveling back and forward to Auckland hospital and constant resting can make me even more lethargic.

Thursdays and Fridays are the worst. The accumulative effect of three or four days of radiation makes me slow down even more by the end of the week. Weekends are bliss, I have every weekend off! Sleep time, recharging has taken on a new meaning.

As time goes on I feel remarkably calm. I'm doing everything I know to help my body cope with this process.

* plenty of sleep

* water (to help combat the dry mouth)

* Spirilina (God's gift to energy levels)

* Resveratrol and Pomegrante Supplements (antioxidents)

* Carrot and vege juices

* Mark's amazing spinach and flaxseed salads and home cooking

So I've entered a new world. Everyday I walk past the Oncology ward. I see the patients sitting in their chemotherapy chairs. On one side of me are elderly people either weak, sad and bald or trying to be brave and hopeful. The Oncology sign might as well have have flashing lights around it and a speaker blaring "CERTAIN DEATH". I don't why it initially brought such a feeling of dred, Oncology simply means 'the study of tumours'. Their are six Radiation machines that are always in operation (except for one maintenance day for each) and they are always fully booked. FULLY booked. Count your blessings and and hug your children people!!

I do know what this feeling of dred really was. If they hadn't found this tumour, if it wasn't being treated these very ill and sad looking people could be me. It's like getting a little snapshot of your future delivered to you. Nobody, especially in their thirties wants that vision of the future.

But in this new world I have also discovered something quite remarkable. Strength and Love. The pure human sort. The kind of strength people must find when they battle through the fear and surface on the other side. the kind of love people oooze when they know you must really need it. I'm now a part of this world.

It's almost like a club. Not one I would choose to be a patient of, but like in many clubs I am feeling a strong sense of comradery. We are all being brave, together.

So this week instead of being fearful, I now feel more love and care than anything. I try to smile at the weak and tired. Maybe my strength will help them through the day. If I become ill during this treatment I feel confident I'll get smiles in return.

The one other thing I do, for me every morning I'm locked onto that table is relax, visualise and pray.
Week one I decided that I need to stop the hate and resentment towards this tumour, instead every treatment session I thank this tumour for not being bad to me for so many years. It hasn't caused any nasty headaches or siezures. Then after thanking it, I then tell it I don't need it anymore.

I imagine it dark and black (cause a nasty version is blaring bright white on an MRI image and I do not want one of those!!!)
During the first week I could see the outside peeling off like a banana. This week the cells are crumbling off like a wall of little building blocks falling to the ground.
It doesn't matter to me that in reality the radiation will not have made much of a difference yet, it's about keeping hopes up and feeling even an ounce of control over a situation where I've been placed in the hands of other's expertise. Mark has even been known to participate in the visualisation techniques while he's out in the waiting room, I think it helps him to cope with the process as well.

So I'm pleased to tell you I'm in a much better place. Mentally I mean. Yep, I get scared but I'm determined not to let it feed off me anymore. Thankful Thursday reminds me of so many good things around me....us!!

Take care

Jaz xx

In my world: Part 2 (or part one continued)

Hi

Sorry I've been hiding. Hiding from myself, the world, the tumour.

Everything.

All of it.

I didn't really want to. I thought I was doing ok. But suddenly, from out of nowhere came a brick wall (of emotion I guess) and I think I must have walked into it. Funny, cause ever since the operation on my brain I had a purpose. To recover, improve and get better.

Well I did that. I conquered all of it.

But I still have a tumour in my head.

I've just started reading John Kirwan's book All Blacks Don't Cry. All Blacks may not, but real men and woman certainly do. Mental health issues have been more topical and openly discussed here in New Zealand in recent years. Which is a great thing.

I think it is still relatively "taboo" and seen as a weakness by many.

Some people refer to their mental health issues as demons, black dogs and many other metaphors. For me, it has felt like a cloud or blanket. A fog even. Sometimes I felt oddly safe cowering underneath and then there were days when I was being smothered and couldn't breathe. I now add to my 'list of empathy'; brain tumour patients, stroke victims and depression sufferers.

So that's why I hid.

I now have got some more support and an expert help to listen and hear me out. I can scream, rant and rave to them without the fear of hurting them. They tell me it's ok to feel all of these things. In today's session they asked me what daily tasks made me happy before 'the diagnosis'.

I couldn't remember.

.........and then it came back to me.

I like contributing. To others' lives, childrens' lives, the community. I really miss that.

I was then reminded that sharing my ideas, thoughts and love with others IS contributing.

Recently people have made lovely comments at how sharing these things gives them hope, love and inspiration. I know I've got to put a lot of energy into me right now, but just maybe I can continue to inspire. Maybe I can even inspire myself.

So. I've been to the bottom. Thankfully, the only way from here onwards is up again. I'm walking the tightrope, climbing the skinny ladder and balancing the slippery beam.

Thanks for your blogs. Jeepers I love watching your families galavanting about each weekend, reminding me of what life is meant to be about.

So here I am. The good, bad and the gorgeous.

I really want to write again.

Thank you for reading. Thanks for your comments. You inspire me too.

Jaz

xx

Yay for being a mum!!

We had a relaxing day yesterday and as I read a smattering of blogs this morning, it seems like many mums had a great day yesterday.

I got to relax and hang out with all my family.

Don't you just love small handmade treasures full of preschool age love!?!

And the preschools who acknowledge these special days.......

Coolest message inside my cup of tea card.

Warm feet, warm heart.

An afternoon of chocolate.......mmmm.

I hope all mums had a relaxing and loving day yesterday.

Jaz xx

In my world: Part 1

I've entered a new stage of recovery.

I think I might call it.............the 'plateau'. Everything seems to have stabilised and no more progress seems to have occurred. I'm not enjoying this bit.

I miss, waking happy, excited even!

I miss, going to sleep without wondering if there are nasty cells dividing and multiplying in my head.

I miss, helping my children across the road. Not the other way round.

I miss, driving.

I miss, just dropping everything and popping out to the shops.

I miss, going somewhere unsupervised.

I miss, the days when my biggest worry was deciding what to feed everyone for dinner.

I miss, the days when Radiologists, Neurologists and Opthamologists were not in my general discussions and thoughts.

I miss, being able to organise a surprise for my family without consulting them or having them with me.

I miss, my normally smooth nails that don't have deep ridges across them from one particular moment of physical and mental stress.

I miss, going to playcentre.

I miss, teaching.

I miss, picking up my children and chatting to the teachers and mums.

I miss, picking up my children without the glances and knowing looks.

I miss, just being mum and wife. Not the mum or wife "with the brain tumour".

I miss, the sunshine. This rain is unrelenting.

I miss, hanging out in the library, and having the focus to read a whole book.

I miss being able to post on here without tears.

To be continued..............

Jaz xx