Wednesday, November 23, 2011

What a week!

We have had SUCH a week.

A week involving packing, short trips away, A&E visits, more hospital appointments, more medical updates and news. It's all so much it simply takes breath away. I hope it calms down soon. But I feel this may be the reality of living with a brain tumour after all.

I've started packing up the house, just the non essentials. It's kind of tricky with funny eyes. But I've never been one to let stuff get in my way. I'm typing this with a patch on and finding it a real struggle. But there aint no way this tumour is going to take my blog away from me!! Not yet anyway!!!!!!!

We drove up to Paihia on Friday eve, staying in beautiful apartments and visited Waitangi on the Saturday.
Arrival at Paihia late Friday eve. LOL

The view out our window the next morning.

Treaty house at Waitangi

Exploring the Maori villages

No as many images as I had hoped but it was point, shoot and hope for the best with my eyesight that day. At least we can tick Waitangi off the 'before we leave the North Island' list.

Unfortunately I was at the end of my 'weaning off steroids plan' and my eyesight deteriorated very quickly. By Sat arvo I could barely see a metre in front of me. Back home we drove and spent Sunday in A&E. Result?........back on the steroids.
I have developed a syndrome, common with either hydrocephalus and or tectal plate tumours where the eye muscle develop paralysis when trying to look upwards. It is extremely frightening, and for some reason the steroids (possibly the anti inflammatory nature of them) help. So I guess it's a matter of working out how much, what level, what dose keeps the symptoms reduced and the side effects limited. I am sad it has got to this. It may well be permanent, although I have a slither of hope that because the brain fluid is now at normal levels and the tumour is not currently growing that the eye muscles and nerves can recover. It says it's possible on my little glimmer of hope is there.

What have you got if you haven't got hope huh?

Other than that, it becomes about acceptance of the changes. It's difficult to swallow. I may never be cured from any of this and once again, my breath is taken away. But chin up and all that. We have got to push on the best we can. Going back to flat land and my friends and family seems an even better plan now.

So much busyness I have forgotten the most important part this week. It was my birthday.
Mark cooked a delicious meal, the girls baked and decorated a wonderful cake and I got lovely,thoughtful gifts. It made life seem a little brighter.
Thanks lovely family for your effort. Thanks also to the all the well wishers and mail I have received.
You all really know how to make a week shine!!!
Jaz xx


  1. Wow Jazz it has been quite a week. Having to constantly end up back at Hospital but be so frustrating, i can only imagine.
    I'm very happy to hear you are coming back to ChCh. Means i might get a chance to catch up with ou at some stage and meet your beautiful family. As you are probably aware Scott and i have been doing a little singing for the Pops choir. Its been heaps of fun, but i have the role of Judas in JC and the Narrator in Blood Brothers so i have had to take a wee break from Pops... back into it next year :)
    I hope the move works out to be not to stressful for you and that you get some improvements to get some hope up again.
    XOX Danny

  2. yay...gotta love the Bay of Islands...My old stomping ground.
    Your courage never ceases to amaze me. You rock Jaz.
    Happy Birthday Blog buddy!

  3. Happy Birthday, what a lovely cake! I hope your eyes get better soon so your move is easier, wishing you lots of luck

  4. I'm sitting in my motel room in Dannevirke with a friend after an evening out with friends and a day out on the lawns. And you know what? I would forego any of that and so much more if it would mean that you would not be writing this post and I would not be reading it.

  5. Happy Birthday for the other day :)


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