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Thursday 17 October 2013

No fog this morning at 4.17 am

But a totally beautiful moonlit night.

The chemo was a success and the pain is greatly relieved.  However, I may have overdone the steroids a bit, hence why I was taking photos with my iPhone at 4.15am.

I still have a few things to do before leaving for the Great Move In, which starts tomorrow.  One of the most important things I have to do is tighten the elastic in the Big Girls Pants on one of my fellow advocates.  Why can we do things for other people but immediately become paralysed when the focus is turned on us?

Residual guilt is the burden of all parents, I expect.  Add on to that the fact that those of us who have/are caring for an ill child (and I am being all encompassing here - from those with "mouldiness", through broken bones, to long-term disability, to life-threatening illnesses), the coudda-woudda-shoudda stuff comes out of the sky like a Bludger and hits you front and centre.  The "if onlys" and "maybe I should haves" and "if I'd justs".

I have thought long and hard about this over the past few months, as you can imagine.  I have tortured myself with the whole "should have had more children, not drunk, smoked, slept all day, taken more exercise, etc etc etc" thing but also have doubted my parenting skills, beaten myself up about what I should have done earlier, what I shouldn't have done, how I should have spent more time playing and less time nagging and should listen more to them and not get impatient etc etc.  I have come to the conclusion that this is all a totally pointless waste of time and energy. What is done is done and I can't change that.  I can apologise for it but whom does that serve?  Not me, or the children, or anyone else for that matter.  It's done.  The pain is real.  Nothing I can do or say can change what has happened or is going to happen.

What I have to learn to do is to forgive myself and to understand that other people may never forgive me, however much I justify myself to them and me. 

In all this complicated mix comes the people who are putting their own fears onto me, or us as a family.  I do find that some families of cancer survivors are insistent that we are not doing the right thing and should be seeing "such and such a consultant" or looking at treatment in Israel or India or eating more tomatoes.  Look, whilst I understand that YOU think you are being helpful, what you have to understand is that what you are actually doing is projecting your fear that the cancer in you or your loved one will come back, like mine and you will be facing what we are facing.  Once you get that, perhaps you will understand that all your helpful suggestions are what YOU would do in our position.  That is your choice, not ours.  It also helps if you understand that "breast cancer" is a wide-ranging description of a whole range of cancers, which respond differently to different drugs, treatment protocols and regimes.  Please don't think you are being helpful when speaking from a place of ignorance.  You are not.

FTR this is the one I have, which is why I am not on the pills...

Triple negative breast cancerBack to top

Women who develop breast cancer under the age of 40 are more likely to have triple negative breast cancer than older women with breast cancer. Black women with breast cancer are more likely to have triple negative breast cancer than white women with breast cancer.
Many breast cancers have receptors for the hormones oestrogen and progesterone, or less commonly for a protein called HER2. These receptors can stimulate the cancers to grow. After surgery, the tissue that is removed from a woman’s breast is tested for receptors.
Women who have breast cancer with hormone receptors are prescribed hormonal treatments, such as tamoxifen or anastrozole. Women with breast cancers that have high levels of HER2 receptors are given a drug called trastuzumab (Herceptin®).  
If you have a breast cancer that doesn’t have any oestrogen, progesterone or HER2 receptors, this is called triple negative breast cancer. Women with triple negative breast cancer don’t benefit from treatment with hormonal therapy or Herceptin. Chemotherapy is more effective for women with triple negative breast cancer.

Enough ramblings.  Boxes to pack, jammies to wash, things to organise.  Task for the day is to forgive yourself and move on......

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