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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

No more Mrs Passive Patient

My serenity prayer bracelet says ‘God grant me the serenity to accept things I cannot change, the courage to change the things I can,  and the wisdom to know the difference.’  Events lately have made me realise that I have been possibly dwelling too much on the Accepting and not enough on the Wisdom and Courage aspects of that saying.

The following is a copy of a letter I sent my oncologist after I had a discussion with one of the clinical nurses before my herceptin appointment yesterday ( I have only replaced or removed names etc to retain privacy)

“Dear …Could you please forward this email to Dr H… as per our conversation, yesterday, 17th March 2011

 Dear Dr H and team,

I have had my CT scan on the 15th March 2011,

After the review of the scan by the team at Auckland Hospital I would request that:

  • If there is definite evidence of metastasis that an assessment be scheduled as soon as possible to discuss treatment options
  • If a biopsy is required, to confirm metastasis, that this be scheduled as soon as possible with an assessment appointment with Dr H deferred until the results have been received.   I see little point in an assessment meeting just to be told a biopsy is required, unless parallel planning for treatment is being done. It seems reasonable to delay the assessment if a biopsy is required.
  • A quick phone call by Dr H or member of the oncology team, to advise whether it is biopsy or assessment appointment being scheduled, would be appreciated.
  • I am making the assumption that the above will occur before my next Herceptin would be scheduled for the 7th April 2011. 

The nurse at my Herceptin infusion yesterday,17th March, was able to inform me that my CA 15-3 markers have risen to 60 so I am aware of that.

I am also looking to make a formal request for copies of my scan reports and other relevant clinical notes, due to concerns raised by what I read in the clinical notes included in my CT scan request which I read while they were trying to place the line for the CT contrast.

The notes referred to in retrospect the ? on my liver had been since August 2010.  I am concerned that the radiologist reading the CT scans and preparing reports for Middlemore appears to have missed this twice and that it was only picked up in the review by the tumour review panel at Auckland hospital after my assessment appointment on 13th January 2011 for both my August 2010 and December 2010 scans.

I have no issues with the standard of care I am getting from the Oncology team at Auckland Hospital but I am concerned about peripheral services. This especially when I had to chase up the CT scheduling at Middlemore,as of the 10th of March they had logged my request at Middlemore but nothing was flagging it as urgent on their system.  They had not even looked at it and and had still not scheduled a CT appointment more than 2 weeks from when it was requested.  I achieved a CT appointment by ringing the patient complaint line and they chased it up for me.

This concern has made me realise I have become a little complacent and I intend to be a little more proactive and ask more questions and be more informed and aware about my ongoing surveillance and/ or treatment.

Can you please expedite review and scheduling of appointments as soon as possible.  Thank you for my ongoing care

Yours Sincerely…..”

I will hopefully know for certain within the next week or so whether I indeed have a metastasis to my liver but it is looking increasingly more likely.

Although my CA 15-3 marker isn’t extremely high it is high for me.  The normal range is 0-30.  Some people’s marker jump up into the 100’s. When I was first diagnosed in August 2008 my marker was only 70 and with my first recurrence Ocotboer 2009 it only went up to 45 so the fact it is 60 now – to me, that indicates that it is a probable metastasis we are looking at.

On thinking why I have been more passive lately and only thinking about the acceptance part of my serenity prayer bracelet, I have come to these conclusions.  I think I was trying so hard to be positive and tell myself it was nothing that I didn’t ask enough questions or push for answers because I was scared about what the answer might be. I have also realised that OH has had the same problem – he doesn’t want to face the fact that my next step is to go truelly metastatic.  He has been very quiet in the last two appointments with Dr H and I think that he is struggling to handle it. 

I need to take back more control of my treatment whether ‘Gertrude’ be metastatic or not.

So as this post title says – No more Mrs Passive Patient!

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3 Comments

  1. Good for you. I wish you didn’t have to fight the system (and failures thereof) as well as the disease. I hope this letter will get some action for you, and I am still hoping for some good news from scan results and/or a biopsy if that is indeed warranted as it seems it might be.
    Kia kaha, friend!

    Reply
  2. Angela

     /  March 17, 2011

    Love you Jen. XXX

    Reply
  3. Good for you!! I’m so proud of you for taking charge! I hope it’s been a case of no news is good news but dammit, you need to know if it’s not. That’s not fair.

    A friend of mine recently had to wait far too long for the report on her last mammogram and when she finally got it they referred to it as a “bi-lateral” mammogram. That made it all much worse as she felt they didn’t seem to notice she only had one breast!!

    Sending you much love and good thoughts. xoxo

    Reply

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