Hi, thank you all again so much for the continued donations, it is quite overwhelming and gratefully appreciatedc.. Part Two of the story so far ? So I guess this is where the 5 stages of grief kick in, Denial, Anger, Bargaining, Depression and Acceptance. I hung around Denial and Anger for the next few months, mostly denial and the lack of valuable information and although I know their intentions are right, the NZ doctors approach to just wait and see means denial seems the only logical solution, I have had a bit of a reprieve of sorts with NET, but not knowing if I am going to be here next year or in 10 years is really hard to deal withc.. September was a bit of a blur really, not the best way to spend your 37th birthday (but getting sick gets you good birthday presents) and certainly not the way you want to spend Fathers Day. Alice is thankfully to young to know whatfs going on, being in this situation and having kids is probably the best and worst part of it all. I donft need anymore motivation, but the idea of not being around to see her grow up is heartbreaking, in a lot of ways I actually get out of this situation pretty easy, its Abby and Alice that are left to deal with the expected outcome and thatfs whatfs not fair, why should a 2 year old have to deal with this, how do you explain that her eDaf was not going to be around, when her sole job is just to be a kid for as long as possible, get muddy, play games, experience the good things in life etc, not get a curveball like thisc.. The next few months are just a wait and see approach by the NZ doctors, I have another scan, Abby is still using me as a pin cushion, off to the chemist for the next lot of 30 needles (I have bruises to prove it), I pretty much sleep for about 3 months, as fatigue seems to be the biggest side effect of this. I got sick again in December and they decide thanks to my GP to start me on a monthly dose of Octreotide, something that is supposed to help suppress the symptoms, typical, its delivered by a needle, this time a gBloody Big Oneh as my GP put it, the comments gGee thatfs bigh and gI am going to squeeze your bum so hard you wonft feel a thingh are a couple things you donft expect to hear from your GP, anyway he lied, its my monthly gHorse Needleh as I call it, it feels like youfve got a dead leg, except its in your bum and lasts a few daysc.. After Christmas, and pretty much staying in the denial stage, I decide to do some investigation into this NET, info is relatively scarce as its quite rare, I stick to the well known websites as there certainly is some rubbish out there but good, useful info is hard to get, every country seems to have a different approach, and NZfs seems the most passive. I finally come across the Peter MacCallum Cancer Centre in Melbourne, this is a treatment and research facility that had some specific info on NET and from the start they just seemed different from everyone elsec.. So in March at a follow-up appointment in Christchurch, we ask about getting a second opinion, more out of frustration than doubt, you just get the feeling that although our Oncologist here is great, her hands seem tied with a lack of info and resources, I could just not keep going with not knowing what was happening and doing nothing just does not seem right. A referral and notes are sent to Peter Mac and almost straight away they got back in touch and invited us to come over for an assessment, they have scans etc that are not available in NZ, again its not funded but doing nothing and not knowing how long you have left are not options I am comfortable withc.. On the 30th April, Abby, Alice and myself are on the plane to Melbourne (Alicefs first plane ride), we decide to make a holiday of it, spend some time with family (recent escapees from the CHCH Earthquakes) and do the zoos etc. A few days later we got what all people in our situation want, HOPE, and a chance to fight this horrible thing, this was not what we expected from this visit, I went more to get some certainty, but that afternoon following the scans, yes more needles, and some conversations with specialists, HOPE is what we had, and the next stage in this journey began.
