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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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Results or lack thereof

I had my usual 3 weekly oncology assessment yesterday and got my bonescan results from last week which showed absolutely nothing of cancer interest. Which is what we had hoped for…but….

Along with the good news came a touch of bad.  My tumour markers which have always been low have shot up by 60 points from 91 to 155 in the last 3 weeks.  Dr H was very proactive and when he heard I hadn’t heard anything about my CT scan be scheduled – it was supposed to take place before my next oncologist assessment appointment on February 17th – he jumped on the phone to Middlemore and demanded they schedule it then and there while I was in the office.  so I have a CT next Wednesday at 10am.  He is away the following week and even thought he is unlikely to have the official report – he meets with the tumour review team on Thursday afternoon and will be able to access and discuss with the radiologists whether or not things have progressed further.  He only approved the Adriamycin chemo for today and next week and will let me know the new plan before he goes away.

The tumour markers combined with more pain over the last couple of weeks tend to make us believe that at best the tumours have not shrunk and stayed the same size but we think there has probably been progression/growth for them to jump that much.

We always knew Adriamycin was more of a stop gap measure that was unlikely to work for very long but I am disappointed that only after 3 cycles (9 weeks) it looks like it hasnt worked at all.  We are starting to run out of chemo options and I had hoped for a little longer on this one.

We should know more by the end of next week – I promise to do another blog post then

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January

I’ve been a bit missing in action on the blog front in January.

I have struggled to find balance.

I have been either too tired or too busy to write any blog updates.

The new chemo (Adriamycin) and pain medication has  been affecting me a lot more than the last two chemos, (vinorelbine and xeloda – oh not to forget the top up of herceptin) that I have had over the past two years, have and I have struggled finding a ‘new normal’, a new equilibrium where I can do the things I need and want to do without wearing myself out too much.

What have I been doing?

my column of our calendar for the last few weeks

 

I spent a day and a half in Christchurch for K’s Funeral, meeting up with CR and CM and spending the night with nieceB and nephew S and his lovely fiance J.

I have carried on with the ‘Cancer Wellfit’ programme.  My trainer was away for 3 weeks over Christmas but I kept up with the cardio part of the exercises on a Tuesday and a Thursday,  while this made me tired it also I think  conversely gave me a little more energy or ability to deal with being busy.

I have helped OD find her wedding dress and bridesmaid dresses

I have had blood tests every Wednesday and Chemo every Thursday.

I have spent a few moments catching up with friends.

I have indulged myself by having High tea at the Langham and Yum cha

high tea

I have helped C our French daughter acclimitise and helped her sort out her uni enrollment

I spent time with N (another exchange student) that was in New Zealand for a month. (and bought beads for my bead bracelets to commemorate their visits)

I have been to the beach once or twice

beautiful day at the beach

I have had a bone scan which required me to be in Auckland most of last Wednesday.

I have had a nap most afternoons.

and when I haven’t had a nap I have gone to bed early.

That has been my January 2012 up to now.

Housekeeping

No this isnt a post about housekeeping tips – if you know me in real life, you know that by nature I am a bit of a slob – No this is about housekeeping in reference to my blog and keeping you guys up to date with what is happening to me.

You will notice that I have changed the colour theme of the blog.  Someone told me they were finding the white writing hard to read so while keeping the purple background I made the posts themselves easier to read.

I have also added a Facebook like box and I have created a Facebook page called ‘Get out Gertrude’ where from now on I will be publishing the links to new blog posts but also putting updates when I have been too tired and or too busy like I have been lately to write full blown blog posts.  I dont want ‘ Gertrude’ taking over my Facebook profile and it also means you don’t need to be my FB friend (and be inundated by facebook games and the like) to interact with me there – the ‘Get out  Gertrude’ page is also a good place to ask questions etc.  If you press like either in the ‘Get out  Gertrude on facebook’ box on the left of the blog or press ‘like’ on the ‘Get out Gertrude’ facebook page itself you will get any updates  that I do there.

As time goes on it will also possibly be the venue for me asking for help with chemo (or other treatment) chaffeurs or other help we might need.

Thank you all for keeping me company me on this journey, I hope this helps you all to keep up.

Chemo et al

Well my neutrophil count was finally above 1 this week – 1.26 to be exact, so chemo was given yesterday (Thursday) ,thank goodness!!,  without any further need for blood test to confirm yesterday or checking with my oncologist to decide whether to proceed.

I saw Dr H on Wednesday and he decided to cut the dose by 20% from 50 mg to 40mg which will hopefully keep my counts a little more stable and closer to the 1 mark but he has also said that if they are stable and I am not feeling sick that he wants me to have chemo if my count is above 0.5 because I cant keep missing two in a row like I did over Christmas and New Year.  Usually the nurse specailist make the call but he has said in future if there is any doubt of whether or not to give me chemo with low blood counts it needs to be discussed with him and he will make the call.

Good news is my tumour markers have fallen slightly with the little I have had so we are hopeful that more consistent doses at 40mg will continue this downward trend at least for the moment.

Dr H has scheduled a CT scan for the middle of my next cycle (beginning of February) to see what is happening and he has also aksed for a bone scan to be done within the next month just to confirm the pain I am experiencing in my back is just all from the tumour pressing on nerves and no cancer in the ribs themselves.  Nothing showed up in the CT scan but it is not sensetive to smaller bone metastases so we are just doing a Bone Scan to confirm.

The new regime of 3 long release painkillers seem to be working well to make me comfortable most of the time, and my gym work is paying off with my blood pressure while never really high has to returned to its more normal and healthy (for me) reading of 120/80 so I am feeling pretty good about things at the moment.

We have a plan and its seems to be working so we will stick with it till  it doesn’t anymore 🙂

A phone call

In early December I received a phone call from my friend K.  It is a phone call I will always remember.  She was ringing me to talk about the latest events in her journey with Inflammatory Breast Cancer.  The metastases in her liver were growing out of control and there was no longer any chemo they could try.  She was now in palliative care only.  She had reached some acceptance of what was going to happen and had made her peace with it.

As I listened to her talk I couldn’t help but feel privileged and honoured that she had rung me to talk – We only got to know each other originally through Sweet Louise when she wrote a forum post asking if anyone else had Inflammatory Breast Cancer.  She had liver mets at diagnosis June 2010.

Like me, she wanted to be proactive in spreading awareness of IBC, and was very supportive of me setting up the Australasian IBC network with our other New Zealand and Australia ‘IBC sisters’.  We call each other ‘IBC sisters’ because we are part of a sisterhood none of us wanted to belong to, but we have that bond to support each other through shared experiences.

I put her in touch with other IBC sisters internationally too though our mailing lists and Facebook group

K and I spoke often, on the phone and through Facebook chat, and when she came up to Auckland in September, for some Rugby World Cup games, I got to meet her face to face for the first time.  She felt guilty that she hadn’t done more in the name of IBC awareness but her treatments made her too fatigued a lot of the time.

Ever since the phone call in December I have been waiting for another phone call, we had exchanged a couple of text messages when she felt up to it but she has been absent from Facebook, I knew it was  only a matter of time.  My niece B has been one of K’s home care nurses, and K gave her permission to keep me informed (without going into details and breaking patient confidentiality) Though our New Zealand IBC sisters in the Australian IBC network I had also put her in touch with another woman, C who also lives in Christchurch and C was able to pop in and see her on Christmas Eve. So between C and B I was kept informed.

B informed me on Tuesday night that K had started to deteriorate more rapidly and when I got a text from B yesterday morning, without even opening it, I knew what it would read.

C rung me last night and we grieved for K together.  And this is what the sisterhood is about.  K rung me on the 10th of December to talk because she knew as someone with IBC with liver mets I was not a total stranger to dealing with what she was going through – although not as far down the path as her – I have faced thoughts of my own mortality and made peace with what ever is going to happen so I could understand and support her in a different way a way that her family and friends, no matter how supportive, could not.

I am flying to Christchurch for K’s funeral and meeting up with C.  We are going to brainstorm how to carry on K’s desire for spreading IBC awareness the breadth and depth of New Zealand.  K’s family is also aware of that desire and want to help and are going to tell funeral goers how important it was to K and ask for their support too.  This will be part of K’s legacy.

Rest in Peace K, you were a gorgeous lady and I am glad to have been your friend and ‘sister’ on this journey.  And whatever I do in IBC support and awareness in New Zealand will be in memory of you.