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    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.
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  • SUSAN’S ARMY

    No Princess Alone button

‘Squeaky Wheels’ and semantics

With Uni starting and us trying to get away for our wedding anniversary and then being sick and sleeping off a virus for my next ‘long weekend’ (Uni is only on Monday and Wednesdays on my part-time paper timetable so Thursday and Friday give us a long weekend each week  this semester)  I have been off-line a lot over the last two weeks.

I mentioned in this post that they had booked me for an urgent scan to be done as they were worried about something on my liver.  That visit to my oncologist was on the 23rd of February and they requested that my CT Scan be done within two weeks.  If you look at a calendar that means we would have a reasonable expectation that it would have been done by last Wednesday (9th March). 

With us planning to go away (from 3rd-6th March) we had tried to find out when they would schedule it.  We rang on the Monday after my oncologists to my local hospital (where I have to have my CT scans done) and my request wasn’t in their system then,  leaving more messages before we went away got no response.  I had hoped to come back to some notification of an appointment.  I didn’t. 

By last Thursday, post the timeframe that the scan should have been done by, I decided to ring again.  They could tell me that the request had been logged but had nothing scheduled.  “But it was marked as urgent, it was supposed to been done by yesterday”, said I.  “OH” they  said  “we might be able to schedule it to be done on the 21st”.  I was so frustrated by their lack of concern about ‘urgent’ scheduling led me to ring the patient complaint line – they went down and chased up my request and after looking at my file managed to get my scan pushed up to the 15th (today).  I hated the fact that I had to chase it up and wonder if I hadn’t rung up just how long I would have had to wait for an appointment.  There seems to be a major problem with how requests are logged into the system with nothing flagging them up as urgent.

Which leads me to today.  I turned up to have my CT scan and they couldn’t find the  vein properly in my left arm (my right one can’t be used due to the axillary node removal) to put a line in, this is where they inject the contrast during the CT.  They ended up having to use an ultrasound machine to make sure they got the line in properly. 

While they were fussing around they happened to leave me alone in the room with my clinical notes where I could see them.  I glanced at them to see what was written about me in ‘medical speak’.

I sort of wish I hadn’t…

All the past history stuff I knew but the last couple of sentences had me rereading over and over to make sure I had read it right.  It looks like my CT scans when initially read the radiologists have missed things.  – now don’t worry it’s not that bad but what those sentences basically said was that in retrospect (on review) there has been a ‘?’ on my liver since the CT I had in August last year.  That there was something on there then that wasn’t initial reported.  It was still there in my December scan.  but the phrase that really stopped me in my tracks differed in just one word from what I had been told verbally.  I had been told there was a ‘possible’ metastasis.  What I read today that word had changed to ‘probable’. 

It’s just a semantic difference but to me probable has a lot more definiteness  vs possible. Pollyanna Jaydub was merrily going ‘its  nothing’ as it has been when I have got the results from other scans that has been born out.  Now it looks like I am definitely heading for either a biopsy or if it has grown straight into treatment.

If I am lucky it could still be nothing but I am not as confident as I was.

Due to the muck-up in scheduling I have had to postpone my Oncologist assessment appointment that would have been tomorrow.  The results from today would not have been through and especially he would not have had time to review them with the radiologist on the multi-disciplinary tumour review panel at Auckland Hospital ( where I get my cancer treatment) – this is where this ‘?’ has been picked up.  I see a clinical nurse on Thursday before I see my chemo nurse and she and I will discuss how we handle setting up my next appointment.  I personally don’t think I should wait for another assessment appointment before they schedule the biopsy if I need one.  I would just rather they rung and said they were scheduling a biopsy and then me see the oncologist once that is done or if the ‘?’ has grown I won’t need the biopsy and they can schedule an appointment to just discuss the results of biopsy/scan or possible changes to my treatment.

I’m still hoping like hell that they have got that ‘probable’ wrong but I just need to wait now to find out.  And we all know how good I am at waiting…

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3 Comments

  1. Ruth Coates

     /  March 15, 2011

    OH boy Jenny! DOn’t you just hate it when they don’t tell you things? And the incompetence at the hospital sure doesn’t give one a lot of confidence either. Hope it’s not grown. A biopsy would certainly seem to be in order to rule out a met. Why we have to fight for everything is beyond me. HUGS! and hope it all goes well. Love Ruth

    Reply
  2. I’m so glad you pushed to get the scan done. I hope things move quickly for you now – no-one should have to wait unnecessarily for results and news in these circumstances.
    I’m sending lots of hugs, and hoping for really good news at your next appointment(s)!

    Reply
  3. Diane Dotchin

     /  March 18, 2011

    Thinking of you. Love Diane

    Reply

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