Saturday, 27 August 2011

Did I do chemo or did I buy jeans??????

Chemo it was, but only just.  As we were going into the hospital and getting closer and closer to outpatients I was walking slower and slower and Daniel was holding my hand tight and kind of pulling me in.  We walked in and it was really busy so the nurse said we needed to wait - if I was to know that it was going to be two hours before we started I would have got back in the van.  But she kept saying, 10 minutes, 10 minutes (not unlike the fish and chip shop) so we get kept hanging around.

Eventually she called us in and hooked me up for an ecg - I don't have a murmer, good to know - then she put a bag of saline up.  In went the anti-emetics, dexamethasone and I think ondansetron.  I had a big talk to her about it at that point - as I still wasn't sure quite what was going to happen when she started the actual chemo.

We went out into the other room and she dressed in her disposable purple scrubs and gloved  and bought out the Epirubicin.  I started feeling sick and nervous at the sight of it.  It comes in 4 (I think) syringes of about 30ml and is bright red.  So she screwed the first one up to the line and was about to push it through when I told her to stop and burst into tears.  I'm talking 10 tissues at a time and ugly face crying.  I was pulling away from her as much as the line would let me and I told her I couldn't do it, so she unhooked it and put it back on her trolley, and degloved.  Another lady's support person made me a cup of tea and the nurse was relly understanding.  I had sent Daniel away because the kids were getting antsy and I had a feeling they didn't need to see that.

After about 15 minutes of crying and feeling probably more terrified than I've ever been, I said for her to do it. So she regloved and as she was getting it from her trolley asked me if I was sure.  Nope, I'm not sure, but do it anyway.  She hooked it up and started pushing it through without hesitation.  If she had stopped and that point and asked me again I am 100% certain I would have said no, unhook me, I'm going home. 100% certain.  And I cried and cried and cried, and told the incredible machine of my body that I was sorry for this, and promised to look after it as best I could. 

Having the mastectomy was scary, and emotionally debilitating and the implications on my family were almost too huge for my poor monkey brain to comprehend.  But doing the chemo is a million times harder than that, but they are not really comparable because it is in a different way.  It is intellectual not instinctual. So for me there are more unanswered questions than answered ones, and nothing useful to help me make a decision. 

It was hard because it is terrifying.  In a way I never anticipated.  I understand the implications, the short term and long term effects on my body's own systems, not just the chemo.  I understand that without the side effects I have no way of knowing whether it is doing anything.  I understand how hard my body is going to have to work just to manage the day to day living that I take so for granted.  I understand the long hard road back to health that my body and I are going to have to undertake.  And worst of all I understand that I am choosing to do this to myself.

Lots of people have said that it is a brave person that chooses not to do chemo.  That is so wrong - for the well informed person who is having adjuvant chemo for tumours that in all liklihood are not there, with drugs that might not work and no way to measure if they are - it is much, much harder to choose to do it.  Especially when I am very aware of what goes into and onto my body.

And I turned up - no mean feat in itself - and then I chose to have chemotherapy.  And I stand by my decision.  I will not change my mind, and will not regret my choice.  I have made the best decision for me based on the information that I had available at the time.  And it will be a relief to not be researching and reading about it anymore.  Google Scholar has nothing more I want to know about drug interactions, or modes of action, or whether epirubicin is a better choice than doxirubicin, or what alternatives to cyclophosphamide there might be, and whether taxanes are useful in my situation and if so is docetaxal the right taxane, and and how flurouracil interacts with everything else, and anthryciclines versus alkaloids in general, and how long it takes rats to die if they eat the carboard box versus the cornflakes that were originally in the box (oh wait, that was looking at breakfast for the boys). It is all so consuming so not going there any more is a huge relief. 

Now I can focus on other stuff, like looking at radiation options and how I can help my body manage these next few months.

By the way, the rats that ate the box lived longer than the rats that ate the cornflakes.  We won't be having those for brekky anymore.............


  1. Hey Jaynie,

    Thoughts are with all you guys. This is blowing my mind & I'm not sure what to say. Missing you & yours and wish we were all back hanging out at Nga Wha. Glad you are done having to decide which path is yours - I can't imagine having such pressure.... you are a trooper.

  2. Wow! You are amazing! I'm glad you have made the decision that was best for you- must be such a load off your mind. I have chronic health issues that I am ALWAYS researching about. It does get old, that's for sure! How are you feeling so far? Hopefully the anti nausea meds help. xo

  3. My heart goes out to you, I'm sending a million good thoughts and hugs, I can understand what a battle it has to be for you at this time, just know that there are people out there (like me) that support you and think that you are an extremely brave person. Love and kisses to you and all of your boys.

  4. lots of love! here is an article with some ways to support yourself...

  5. turmeric?

    hope you are well! love and hugs!

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