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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • 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

You’re doing really great…but

I had my oncology assessment appointment yesterday to get my next cycle of Xeloda.

My tumour markers continue to fall really fast ….but

due to the increased side effects last round its a possibility if they get worse this round we may have to cut the dosage back

My liver function test markers are also improving really well….but

they want to do another scan to make sure what the blood tests are showing is what is actually happening because apparently even when the blood tests are good there can be more metastatic activity.

I should be fine to go to Australia like we are planning with YD…..but

could I put off booking until the scan result is back in case we need more tests or need to change chemo?

To say yesterday’s appointment left me a little pissed off and  frustrated would be an understatement.  It just reinforced all the stuff I try not to think too much about.  That controlling Gertrude is how I’m going to live the rest of my life, and that dictates what I can and can’t do to a large extent. ( although it could have been a touch of leftover PMS as well LOL)

But…

After more discussion with the doctor it was decided that regardless of what the scan shows we won’t change treatment (if it is even necessary) until August – that we will try and make YD’s trip (with Mummy) happen regardless.

I asked for more panadol so they gave me this supply (480 tablets) …I dont think I am going to run out anytime soon LOL

makes my 140 tablets of Xeloda supply look small

But…

Today has been a good day. even though it has been miserable weather.  Lots of positive things have happened today. 

I read a book that had nothing to do with ‘cancer’ or ‘social work’.

I bought myself some flowers, flowers always cheer me up

bright coloured lilies and aloestromeria

I made dinner… a slow cooking casserole that I put on this morning for consumption tonight … which is making the house smell delicious… all chicken and herby

I went to a ‘Sweet Louise’ meeting and actually met another recently diagnosed IBCer who lives only about 40 kms from me.  We were both rapt to meet someone else with IBC and are planning to meet up in a couple of weeks time.  She isn’t on the internet but I’m taking my laptop and mobile broadband t-stick out to show her some resources. 

The ‘Sweet Louise’ meeting was also good for just venting some of the frustrations  from yesterday and talking about life in general.  And because all the women have metastatic breast cancer – they get it.

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12 Comments

  1. ….there is just something about food in a croc-pot that makes home – home. Shitty about the appointment; great that you’re hooking up with others who can really understand what you’re going through.

    Reply
  2. Terry Arnold

     /  May 25, 2011

    Jenny, I am sorry to hear about the upsetting appointment. I love to read in spite of what all you are doing thru you have joy, and you have a heart for others..meeting the other ibcer, that is wonderful. I think we can find strength in each other. I hope you can show her the ibc map. I hate adding the pins, but I love turning the blue pins, (in treatment) to green, (NED). Cheers friend,

    Terry in Texas

    Reply
  3. I am SO GLAD that Sweet Louise is helpful to you!
    It’s fantastic that you and YD will be able to go on your trip regardless!
    As for the rest of it,THAT SUCKS. Xeloda did a number on me too. The energy was the worst. I was SO TIRED all the time! Do you have a good cream for your feet?
    I hear your frustration. It’s good to get it out. Gertrude sucks.

    Reply
  4. I HATE THIS DISEASE, and I HATE THAT IT WON’T LEAVE YOU ALONE.

    Reply
  5. GAH, so sorry about all the frustrations. Glad you were able to vent, and of course you can always vent here. *hugs* to you.

    Reply
  6. ruth

     /  May 26, 2011

    I am so glad you are doing well and the drs finally acceeded to your wishes for the trip and other things. You ARE doing well for now so enjoy yourself and let the rest go for awhile. Have a great trip.. would love to meet you sometime too, but MI is a long way from NZ! HUGS!
    Love Ruth

    Reply
  7. I hate that Gertrude is causing you pain, and frustration, and most of all that she is making you question your future plans with YD and your hubby.

    The Sweet Louise group sounds amazing and very supportive, good for you for reaching out to others and in the process finding peace as well.

    I always have you in my prayers Jenny and I know that you can kick Gertrude to the curb again!

    Now, how about that sushi date?

    Reply
  8. Michelle Landrum

     /  May 26, 2011

    Hiya. I’m a pal of Sunday’s, and I just wanted to send along good karma to you and your family!

    Reply
  9. Sending you lots of hugs, friend. We missed you this week, @whymommy and me. I haven’t been great about writing about my trip yet, but it’s coming, I promise. Just as soon as I know what time-zone I’m in long enough to write something 🙂
    Lots of love!

    Reply
  10. jenny

     /  May 26, 2011

    I got given 240 panadol when I went to A & E for a sore back just after Xmas

    Reply
  11. Ah damn, I’m sorry it’s giving you so much trouble. I hope your next rounds of test help alleviate some concerns. In the meantime I’ll be sending you lots of hugs!

    Reply
  12. Sis m

     /  May 27, 2011

    – you are doing so well, luv you lots sis

    Reply

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