Seeing it written down

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I like to have information and I think my oncologist has guessed that about me due to the number of questions I ask.  Knowledge is important and sometimes ignorance is bliss – it’s difficult to strike the right balance when you have a cancer diagnosis.  Too much info can push me over the edge and upset me, but too little and I feel out of control.

I asked to see the pictures of my CT scan and he talked me through the interpretation.  From a purely objective view it was interesting, from a personal perspective it was difficult to see my body from the inside out and to have the number of lesions, tumours, whatever you want to call them, pointed out in such stark detail.  Having said that it was helpful because it made my diagnosis real in a way that nothing else had.

However the written word seems to have a much bigger effect on me.  I remember looking through the midwifrey notes just after I ‘d had my first son.  I had to have an emergency caesarean and for a time it was touch and go whether or not he survived, it really hit me hard when I saw written in the notes something to the effect of “viable male delivered”.  I cried and cried because of the brutality of those words and the way it was all reduced to three words.

In breast cancer there are a lot of words and jargon, sometimes I read about cancers being triple negative, HER2+ – the list seems to go on!  When you are in this club others will share with you their diagnosis in this language and the treatment you get varies depending on these seemingly random groupings of letters.  So I wanted to know what mine was – what group of letters described my particular brand of this disease.  I asked at my last consultation and he offered to share with me the letters he was sending to my GP after each consultation.  I’m not sure if this is normal practice but yes I did want to see them.

They arrived yesterday – a whole bunch of them in the post, dating back to my first diagnosis of incurable breast cancer.  I wasn’t prepared to see them and I was with someone else at the time, I opened the letter and immediately closed it again, I knew that I couldn’t read them now, I couldn’t trust my emotions.  When I did finally sit down and look at them I was broken.

I know now that my particular type of cancer is breast cancer with bone and liver metasteses- ER8/8, HER2 negative.  It’s hard to see it written like this,  and I didn’t expect it to feel this way.  It feels final, harsh and cold.

What I wasn’t prepared for were the other descriptions in detail of the size and extent of the cancer in my body.  As I sit here now looking at them I am crying.  Words like “multiple lesions”,  disease of moderate volume, “recommend palliative systemic treatment” break my heart.  I’m feeling so well that I could almost forget what is wrong underneath and these letters brought it back home to me in a big and unexpected way.  I know that I had heard all of this before, it is exactly what I’ve been told, what I understand and what I have told others, but seeing it written down somehow makes it much more final and real.  These are printed in black and white, not spoken, lost to the ether the moment they have gone.  These words will not change, I can’t pretend that they don’t exist because they do, I have them here in front of me.  There are lots of positive words in there as well about my health and hoping to keep me well for a number of years, but these didn’t jump out at me and they aren’t the ones who are staying with me just now.

I’m glad I have the letters.  I’m glad I know.  It was hard to read them, but I needed to.  I needed to see it and understand it and accept it.  I do have cancer and I will never be without it, it’s just that sometimes I can forget it and that feels good, these letters reminded me and that feels tough.

2 thoughts on “Seeing it written down

  1. Dear Ruth,
    Thank you for sharing this. Your description of balancing information and ignorance is something I struggle with too. My friend with sarcoma tells me not to let the medical professionals concretize my reality with breast cancer, but reading reports makes that hard. Your writing has given me the comfort of a shared experience, and I thank you for it.

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  2. Ruth it’s so well written and as your friend who knows or think I know what’s going on this is upsetting. As you say the words just give a harsher reality, your so well and relaxed its easy not to think about your cancer as not being treated. You have an unknown future in front and what you do and enjoy each day is so important. Our days together as friends are also important as we all don’t know what’s coming up and focusing on life is important. Thanks for writing this and I hope those letters don’t spoil your days xxxx

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