Monday, 30 January 2012

5 months.

This is take two on today's blog... lost the first edition in cyberspace...

Today marks five months since my craniotomy.

When I reflect on how much life has changed since then, it is just about hard to believe it was any different.  Apart from not driving, I feel back to my old self.  I've gotten used to not having a drink occasionally, used to having incredibly short hair, and used to the treatment schedule that I have been allocated.  I have become used to visiting my oncologist no longer fearing bad news every time as I did in the beginning.

My family has closed ranks and adjusts their schedules to accommodate my own - the best kind of taxi service one could hope for - I am truly grateful.

As a family we are more considerate and appreciative of one another, we know that it is not just my journey but a journey that affects those nearest and dearest to me.  Their well-being is paramount as I lean on them during the tough days when my own is compromised.

We hug each other and say 'I love you' much more than pre-diagnosis and I know I am incredibly lucky to have such a close-knit family.

Since my last entry I have completed my Diploma course and await graduation (17th Feb) with excitement and nervousness... I've been nominated as class representative to say a few words on behalf of the class.  Everyone that knows me knows I'm NOT a public speaker, but after the last few (5) months it has definitely been downgraded in terms of scariness so I'll give it a go!

We have recently returned from a whirlwind trip up North... We found a map that had the twin coast highway tour and did that - with a bus trip to Cape Reinga thrown in too.  Was a great celebration as I had finished that cycle of treatment, and found out my last two assignments had passed and I was finished my study!

Tomorrow I am due to have my first MRI scan since I began treatment...I am fairly confident that there will be no surprises, I feel fantastic and have had no symptoms so I'm not expecting bad news. Sure, I'll be nervous tomorrow and until I get results on the 7th if not sooner, but I have a feeling that everything will be okay.  The part I'm not looking forward to is having the line put in my arm... it's never an easy job to get one in me and they've booked me especially on a Wednesday when there is a Dr in-house to do it... goodie...

I will post again with any news I discover, until then, love much, laugh often and take care of those close to you.

Arohanui xx

Tuesday, 10 January 2012


That is how much I am grateful.  Grateful because that is how much my drugs for this week WOULD have cost me if there was no subsidy in New Zealand.  5 days, 20 capsules, $168 per capsule.  I was pretty stoked to just be handing over my $3 dispensing fee.

If the wonderful Dave Bowman (Million Dollar Tumour - Doco) hadn't have lobbied the drug company to have this medication subsidised I would well and truly be up shite creek without a paddle.

The first day of the new higher dosage went well... I feel pretty good, and surprised that there was no more effects noticeable than the last lot.  Come the end of the week it may change completely but for now I feel no different.

I've been pottering away at my last two assignments, as part of the deal of being able to graduate with my class in February I needed to complete as much of them as I can and hopefully get a pass... I can honestly say that it was a huge disappointment to be told to catch up on it all given my illness, but I'm pleased that I still have to work to pass like the others did.

I completed the enrolment form for the degree upgrade beginning in February this year - 10 months part time that will end me up with a Degree which I will be super stoked about!  Along with the Teacher Registration over the next two years, I think I'll be busy.  All of that AND planning for our wedding on the first weekend in October and this year will be jam-packed.

Had a lovely catch up with some friends (and a blast from the past) on Saturday... could have stayed WAY longer but the catch with not driving is knowing that you are on someone elses clock so Ladies, we will have to do it again soon!

The no driving thing... thought I'd take a punt and test the waters at oncology yesterday.  Its an absolute flat out NO 
Him :"And I suppose you want to talk about no drinking too?"
Me: "I'm happy not to drink ever again if you could just let me drive"
Him: "You just have to accept the things in life you cannot change"
Me: "Then I might be need to drink or you're gonna send me to the loony bin". which didn't go down well!

It was all with a smile on his face and he mumbled something about me being a trier and how much change I just need to accept... he wasn't too cross cos my bloods were 'perfect' and I am doing okay so was a bit of a star pupil really!  We thawed him out in the early days and got him smiling and joking with us... he probably needs a break after we've been, but I figure he's got a serious enough job, why not have a bit of a giggle while we can?!

In order to drive there is nothing I need to 'prove' at this stage... I need to finish all my treatment and then wait a year and a half apparently which will SUCK, but maybe if I keep doing well and not seizing or drinking then he might let me... maybe, but I'll not hold my breath.

Have been terribly brave in the last two days... didn't wear my wig up to hospital yesterday, then at the skate park in Palmy, then I went into a really busy 4 square.  Today we did the groceries and I walked around Pak'n'Save for a good couple of hours with a nude nut... liberating!  It's not as nude as it used to be cos the hair is growing back in places, but it makes me feel good to see that people don't stare as much as I thought they might :o)

I leave you for a few days of hopefully no more rain or wind - and no sickies for me!

Love and light and fluffy goodness xxx