Wednesday, June 1, 2011

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!!
Take care
Jaz xx


  1. Wow what a great update...I'm sure that despite the scariness of what you're going through, knowing you are DOING something positive and proactive to fight back really helps with how you feel mentally.

    Loving the approach you have taken with regard to praying beforehand and acknowledging the place the tumour has had in your life up until now and dismissing its need to be there any longer.

    Will be praying for strength and minimal after effects after each treatment and for that tumour to be getting blasted REAL GOOD! xxxx

  2. Great work Jaz - I so admire the way you are handling this and that you are working on it together. Sorry we are so far away. But we are always thinking of you all. Hugs to you, the girls and Mark.
    Phoebe certainly looks her usual gorgeous self - so hope she feels better soon too

  3. Fantastic to hear that positive spirit in your voice again. Keep it up and stay determined! You can see that same positive personality in your kids - Phoebe getting busy and having fun even with chest cold! We are still thinking of you..

  4. Jaz - my admiration for you and Mark increases every time you post and I truly believe that your positive attitude will win through.

    Your anecdote about the people attending at the Oncology Department being like belonging to a club rings such a chord. I'm still in touch with some members of the 'club' which formed my radio-therapy sessions. We used to tell people who came with a negative attitude that they couldn't join if they didn't change their attitude and could go and sit in another waiting area. We were quite rude and quite brutal. After a bit of grumbling and resentment everyone did change and, without exception I think, thanked us for it afterwards.

  5. I admire your courage and outlook Jaz. I read your updates regularly (and update Pete who doesn't get onto the computer often). You have no idea how much luck and good wishes I am throwing your way. Stay positive, enjoy your family and take care of yourself. Kind regards, Kelly Rowlingson (Pete Rowlingson's wife).

  6. Sounds like you're doing absolutely the best anyone could out of the situation. With such a mum, no wonder your little girl looks like sunshine even with a bad cold! :)


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