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 Google..............so 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.
We are relocating back to the little township of Rangiora where we moved from two years ago now. Mark has a managers job within the township and with any luck we will wake tomorrow with the contract on a house purchase finally through the rigorous insurance checks now required within a seismically freaky zone.
We have mixed feelings about the move back home. We actually love our new home up here. The location, lifestyle and new friends. But we must admit the dreaded brain tumour has hampered this lifestyle. Mark and I are both fiercely independent people and a little stubborn. So we are not entirely happy that a little tumour is now dictating our journey.
But it is, and we are learning to accept the changes it is bringing.
I am certainly a different person to whom I was when I left Canterbury. Inside and out. My experiences before after the diagnosis of the tumour have certainly left their effects. Surgery, rehabilitation, treatment, medications, losing hair, changing appearance, stress, fear and many other aspects of this journey has left a few scars. I am apprehensive about taking "me" home. I often don't recognise myself. And I really mean the inside as well.
We also realise the Christchurch we once loved and felt a bond with doesn't really exist anymore. We haven't been back since the devastating and fatal February earthquake. I know we need to prepare ourselves for the devastation and sadness. We will watch Christchurch rebuild with hope and anticipation like all other Cantabrians I imagine.
We are looking forward to being back amongst the people we love. As I am not currently permitted to drive I am looking forward to being back on flat Canterbury land for walking the kids to school and regaining my own independence.
Mark's work will be just a stones throw from our new house (please go through contract!!!!). Which means no long trips home, no commuting. I have my husband near me. This I like and want. This tumour, as much as we loathe it , has brought us so much closer together as a couple............ as a family in fact.
Lovely Ashley River
Our lives in Whangaparaoa has been lived in rental properties. This has been ok for the duration. We were more interested in exploring every weekend, making memories and taking loads of photos. And this we did.
Now we want the Kiwi dream back. The backyard, dog, vege patch and a place to potter. Our place.
This move back home is going to bring us that.
To those of you we are leaving behind up here, thank you for making us feel so welcome. We will miss you all dearly and consider you life long friends. Northland will always be a place to revisit and holiday in. Thanks for becoming a part of our extended family.
Southern Alps and Canterbury Plains
To those of you who are awaiting our arrival back on Canterbury soil. Not long now. We are excited to rebuild friendships and see you all again in early January.
Yip it's 3.36am , Monday morning and I'm blogging . I'm either a little mad, hopelessly addicted or it's something else.
Oh that's right.
I HAVE A BRAIN TUMOUR.
They make you do some funny things these tumours. Like; awake at three am with hunger pains you can't ignore (that's the steroids, which I'm nearly off, YAY!!) and insomnia.
So what's a girl to do? Blog of course.
Gone are the days when Monday morning posts were all about the weekend just gone and enjoyed. Even though we had a great weekend. I'm still posting about this bloomin' thing in my head.
I thought about dying last night. Mark and I were sitting at the computer together. Doing mundane stuff. It hit me like a gale force wind. Brutal with the stench of 'tumour'. Waves of tears. And then gone. More like a Nuclear wind I guess. Not often does it get me anymore, I tend to keep myself distracted and busy, but sometimes the mundane tasks seem to encourage it, or at least allow it to get me.
I've worked out what our WORD is for this year.
Plain and simple.
I used to enjoy teaching values and attitudes as a unit theme with primary school children. Courage was always in there. It takes a lot of courage to be a learner. To take risks and try new things.
Well i've learnt a thing or two about COURAGE this year. In fact our whole family has. My children have been extraordinarily courageous. Mark shows courage in a daily basis living with this tumour alongside me.
But I now know what RAW COURAGE is. I can't think of another way to put it. It's the kind of courage you need when you know something needs to be faced or completed and your entire being wants to pull away. I didn't want to learn it or even experience it. It was kind of thrown into my life. I don't even consider myself very good at it. I just had to do it, be it, own it I guess.
It sucks. (As my pre teen might say).
Brain surgery is the scariest thing I've ever had to face. Every inch of your body wants to run away. You've just spent time chatting to several surgical assistants and registrars about the numerous risks. But lying on that table, looking at the surgical lights above you, you know it's too late. It's going to happen. The only thing left to try is a bit of COURAGE.
That's the courage I mean.
A very special woman in my life said something very poignant and memorable to me about courage this year. Her words, I can't remember to quote exactly, but the sentiment I will never forget. "Courage doesn't always lift its head and roar like a lion. It's often just a small and quiet voice at the end of a day that whispers; I will try again tomorrow".
I guess. Courage presents itself in different forms. Depending on what you need. Thankfully, most days, that quiet voice is all I need.
I'm not trying to talk myself up here. I just needed to write. Funny what you think about lying awake in bed. I wonder what tomorrow's topic word will be?
I'm not normally superstitious at all. But ever since we met , Mark and I have had a 'thing' about the number 11.11.
It started shortly after we started living together. We kept noticing the time 11.11 on the digital clock. Over the years whenever we noticed it, often at the same time, we would look at each other thinking it was a bit odd and spooky.
Now. It's just our number.
We see the time and smile.
It still happens all the time.
So today has almost become an anniversary of sorts. Mark even woke and greeted me with a big kiss and a 'Happy 11.11 Day!!!"
I know others' around the country and world are celebrating and considering it a lucky day. Well it is for us. We feel lucky to have each other!!
Happy 11.11 Day to you Mark. I feel lucky to have you in my every day.
Happy 11.11 day to all of you out there. I hope it's a lucky one for you all.
It sure is tricky being thankful when things just aren't cool.
I struggle to see every morning. Making the school lunches in my "pirate feathersword" get up. One eye patched so that I may negotiate the kitchen effectively. Ridiculous really, but if I don't my vision is a swimming mess of multiple images. Bloody, brain, bloody tumour, grrrrrr.
Even the Bougainvillea growing on my deck looks like it's worthy of thanks. Beautiful!
But it was for his very reason I started doing Thankful Thursdays. I needed to be reminded, even on the worst days and weeks. I AM NOT DEAD YET.
For this.......... I am REALLY thankful :-)
And while I'm still kicking, breathing and walking into things, there is hope. Plenty of it.
So today is purely a reminder to oneself. Come on Jaz. You aint dead yet. Still plenty of stuff to achieve. Even if it's slightly modified, altered or impaired. Life still needs to be lived.
I'm typing this with my eye patch on as my eyes do not cope after a full nights sleep. But we crack on despite. I really hope my eyesight returns.
You may have seen my comment on my last post that the MRI went pretty well.
1. No new growth of the tumour (still the same size but they can stabilize and take a long time if going to shrink. Time is needed here.
2. The discolouration caused by radiation treatment is resolving and not a sign of any new disease. ONE BIG PHEW!!!!!
3. My ventricles are still a bit overfull of fluid which may be the discomfort I still feel. The drainage hole has worked and is working,but once again this is a scenario that needs time.
4. I have lost my cheek bones LOL. Bummer. The fluid caused by fluid retention (steroids) have changed the shape of my face (well I certainly notice it). I laughed at it yesterday as I brushed my hair. I laughed. I reckon that's another step towards recovery mentally at least :-)
A Night Out
Lat night we shared guy fawkes with friends and at their street party. It was a great night. I actually didn't think I could do it. With the amount of pressure I currently have in my head I find noise and lots of people and movement just a bit too much. But with a head full of antinflammatories, well watered and fed the night got better and better.
I think some times distraction has a major role to play when trying to cope with feeling unwell.
Thanks Lisa and Paul! What great spread, lovely company and awesome to have had some fun!
The fire works were brilliant fun for adults and children alike.
and more happy kids....
and some more!!
My happy little girl who was petrified of the fireworks last year really warmed to them and was extremely brave.
I realise I haven't made much of an effort to be Thankful on Thursdays lately. Shame really as it was a time in the week which forced me to have a more positive outlook on our current life. Which is a good thing.
So although Thursday has past. I shall be thankful on a Friday.
A very good and dear friend called me this morning. Just hearing her voice made me shed more than a few tears. I was, thankfully, able to offload (she doesn't mind a bit) many of my fears and some of the icky stuff I've had to deal with this year. What a load off it was. I am so grateful to have her in my life. Love you Simone xx
Next I am thankful that my children can have some normality. A small sleepover with junk food and DVD is scheduled for this evening. It hasn't been a regular event at our house this year. Most of the the social events have taken our children to other people's houses. It is nice to finally host a friend and have some fun. Yay!
And finally. Things are growing.
Parsley, strawberries, spinach, corn and courgette. Just a smattering of veg.
But it is lovely to see anyway. Thankful for the warmer weather arriving and new growth around us.
And these lillies, almost bursting into bloom were from my late Nana's garden. They have been with me at every flat, house and rental we have owned or lived in. South and North Island. I have moved them with me loyally and Nana has never failed to deliver yearly blooms. Lovely huh.
Can't wait for it to happen again soon :-)
Thank goodness for finding these things around me.
We plan to get the kids out on their bikes this weekend.