Thursday, 30 August 2012

A weeks worth of news

I am writing this from one of my favourite café’s in Ducatilad land where I am enjoying a few days of pampering and restoring with Ducatilad

There has been a lot going on in  the last week.

As I wrote in my last instalment I was very much looking forward to celebrating S’s 21st birthday. It was a welcome distraction and a reminder that milestones are important to mark and the joy of sharing it with people you love.

The weekend of celebration for S’s 21st allowed me to be just P, and not P with cancer. I can honestly say as I was standing at the bar, dressed in my Belle (as in Belle from Beauty and the Beast), costume that really needed a cleavage to hold it up, sharing pancakes, cowboys and the odd vodka shot I forgot that I had no boobs and that a little over 4 weeks before I was lying in hospital. This is the amazing capacity of the human brain to compartmentalise things and the power of alcohol to help you forget. Please no tutt tutting about that statement and let me clarify it was the cancer I forgot not the party.

There was a bit of a feeling of deja vu with S’s birthday and my cancer. At S’s sixth birthday I had only very recently finished my 6 weeks of radiotherapy for my first breast cancer. At the start of the radiotherapy I was marked up with gentian violet (like purple texta) so that they could blast me in just the right spot. (Seems they didn’t do a very good job as the f**cking thing came back). 

For some reason S hated these marks. At that stage the only thing I could promise her was that they would be gone by her 6th birthday. They were, we had a great birthday party and I looked resplendent in my Snow White costume.

Fast-forward 15 years and there I was 4 weeks post surgery for a second breast cancer, looking equally resplendent in my Belle costume.  

Just wish I could have promised her this time that we were over the treatment.

At the risk of veering into the TMI (too much information) lane, but delivering on my promise to be honest about my experiences, I wish to let it be known that having no boobs has had absolutely no impact on Ducatilad’s normal responses to me after not seeing me for a while.  And the same can be said for me. I feel attractive, loved and desired. (Ok I did leave my camisole on the first time)
The biggest step was being seen in the shower and you know what? That was OK too.  And this morning I simply wandered around as I always do – naked. (Apologies if that is an image that most of you don’t need).  

He promised me it wouldn’t make any difference and he was, as always, true to his word.

OK so now that I have made you all read about 21st Birthdays and my sex life I guess what you want to know is where are we up to with the oncologist and further treatment?

First up I should say that I was really impressed with A/Prof E. She was honest, patient and most of all was interested in me as a whole person, not just my cancer. Given my work, it is so encouraging to have a medical practitioner ask me about what psychosocial support I had, how my children were doing and what financial stress this may or may not cause me.

However the shock of the news that the she delivered to me last Thursday regarding the real possibility of having to have chemo did do my head in a bit.  (OK that is actually a really really huge understatement)

And of course there was lots of information given.

But fortunately trusted Na came with me to that visit and produced a comprehensive summary of the appointment which was enormously helpful in getting my head around it.

The main points were that given my pathology results, the fact that they think this cancer is a recurrence and that there is a risk of me getting another cancer the default position of the oncologist was to recommend giving me chemo.

Now chemo doesn’t work for everyone in reducing the risk of cells going feral and causing another cancer. The issue is that it is not easy to work out who will actually benefit so they tend to blanket bomb everyone to make sure those that do benefit will.

There is a test that is now being used widely in the States that can give oncologists a better indication of whether chemo will in fact benefit women like me in reducing their risk of getting a recurrence. Essentially it is a risk predictor tool that looks at the genes of the tumour to predict how likely they are to end up somewhere else (this is a very lay persons explanation)

My oncologist (so now there is my hairdresser, my beautician, my  therapist…) has been using this test and she trusts the robustness of it.
So while her default position was to recommend chemo – if we didn’t have access to the test, the test would give her more information and know that it in fact would be of benefit.

The  test isn’t covered here and it is costs more than a louis vuitton bag , a chin augmentation or a double mastectomy.

Cost isn’t the issue but the concern was that we would do the test, pay the money and then still be having chemo.

But if I am going to submit myself to 6 rounds of the equivalent of crop dusting, loose my hair, my eyebrows, eyelashes and feel like shit for 18 weeks then I guess we want to know that it is at least going to benefit me.

The upshot is that I have agreed to the test.  I don’t have to do anything. They take a small sample of the tumour and send it away to do the testing. That was done last Monday.

So now it is just a matter of waiting for the results. Not an easy space to be in as I can’t really plan for much as I don’t know what I will be dealing with. Again I am trying not to engage with it until I have to.

 However I have started on the hormone therapy, which we know, will be of benefit as my tumour was very hormone receptor positive. This means it needs female hormones to grow and reproduce. Hormone therapy works by stopping oestrogen from 'feeding' the breast cancer cells.

This involves taking a little white tablet once a day for 5 years. Not a big deal and I am hoping that I avoid any of the reported side effects like growing a small penis, facial hair and an attraction to women.*

It does all seem a bit surreal – every so often I have this urge to shake me head and go Whoa I have had cancer a second time. That is just so bizarre. Especially as I am now feeling and looking (if may say so myself) pretty good.  

In the meantime I could get very used to this life of writing in café’s and being pampered.

I intend to enjoy this time as it may all come to a bald, nauseas halt in about 3 weeks.

Well I think I have brought you up to date. Yes there has been a lot more emotional processing, which I will write about when I run out of actual news.

I can now stop beating up on myself for taking so long to write this. I know, cancer is supposed to make me stop placing all these expectations on myself, go with with flow, do what feels right, be zen and sit in the lotus position for hours on end. I am trying, honestly I am.

I remember last time waiting for the bolt to come down and hit me with all the answers to the meaning of life and a transformation to take place. It never really happened. 

This time though I think I might just wait a little longer, listen a little more closely and do things a little differently.

Because there are only two times in life - now and too late**

As always

P xx

* no surprises that these are not actually documented side effects
** this is not original but one of my favourite lines from Anh Do's book "The Happiest Refugee." Highly recommended reading.


  1. Yay for the oncotyping. Used a lot here, of course I live in the land of "Lance Armstrong was treated here" and one of our local oncologists is immediate past president of ASCO.

    Thank you for sharing that quote. I need to remember that too.

    Warm fuzzy thoughts being sent your way. With love

  2. Why don't we all donate some dollars to help P with all her costs. Who is with me? P you are still an inspiration to all of us! KL

  3. I am overwhelmed by people's generosity and thank you. Our grandparent's always told us to put something away for a rainy day. I listened to that advice and my rainy day is here. Hopefully the investment I am making will ensure that I have many many more days in the sunshine.
    A donation to any of the leading cancer charities will ensure that research into things like the test I have had can continue and govts can be persuaded to make these available to everyone not just those who have the funds.
    With love P xx