Thursday, 11 August 2011

Furious with Northland District Health

We went to our other oncologist appointment yesterday.  She seemed much nicer than useless onco1 and told us as much as she had time to.  Apparently the chemo only works on circulating cells that are looking for a place to become a tumour, not really on tumours already there - surgery is the answer to them.  So the chemo is working on the 20% chance that there are cells there that are trying to become tumours.  Unfortunately there is no gaurantee that the chemo will even work for me - that seems to be pretty hit and miss - nor is there any way of checking whether it works or not.  There is nothing to check on.  So they want me to have chemo on the premise that there might be cells that need destroying and if there are then the chemo might work on them, but we'll never really know unless it all turns to shit years down the track.

On top of this one of the drugs increases the overall prognosis by 2-4%, but it also carries a risk of cardio-toxicity (it could screw up my heart when I'm older, and potentially I could die from this) by guess what, 2-4%.  It has the same chance of making me worse as better. This is just getting harder and harder.

There seems to be no point in splitting the drugs up at all, and they are also working on the idea that this drug is pretty much the same as that drug so it should do the same job but we don't really know because they haven't ever been independantly tested........good luck and off you go.

The worst thing is that after a month of seeing surgeons and nurseses and almost 7 weeks post surgey, and seeing 2 oncologists and 1 on the phone, it was the nurse who says to me "if you don't start chemo by 12 weeks there's not really any point in doing it at all"............ WTF...........

They're telling me this 5 weeks out from the 12 week mark and I'm supposed to have time to make a decision re IVF then do it in this time frame.  This is negligence, pure and simple.  I should have been warned of this prior to surgery.

So I call her and ask her if she's telling me that because of the public health system's  inefficiency I have to choose between chemotherapy or babies?  She sputters a little then says she'll speak to the oncologist and call me back.  The onco has then deigned to say that she will still administer chemo but cannot gaurantee it will be worth the side effects as there is no research that extends past the 12 week mark.  The nurse couldn't tell me if there is a decline in efficacy or just that the research stopped for no good reason.

Again, WTF

When all this is done, I swear this DHB is being hauled over through Health and Disability Commission.  They cannot juggle people's lives because it is more convenient.

I am so angry.


  1. That sounds ridiculous!I have to ask my mum what they said to her. Never heard anything like that before!! Can understand that you are angry! unprofessional!Is this just Northland style? hang in there!xxxxxxxxxxxxxxxx Karin

  2. seems like your specialist are not very special.... but you have 3 beautiful little kids, so just do everything you can to stay alive for them. Don't put the hope for another baby ahead of the ones that are here now. Get every bit of chemo you can, and love the ones you have. You are very lucky to have your 3 babies and a great husband.