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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

Juggling

I feel I’m juggling several balls in the air at the moment – I want to be involved with Pink Ribbon Breast Cancer  awareness in October but I also have several assignments due at the beginning of October too.  What to do? … what to do?

Unfortunately they all occur in the first half of the month too.  On the 2nd we have the Dove Pink Starwalk which also coincides with YDs ball night so have to juggle helping with preparations for that – she is adament she wants to get her nails done at a proper nail salon so I am taking her to that in the morning and then her house staff will finish getting her ready and take her to the ball.  We sorted out what dress she was going to wear yesterday – I managed to talk her out of a 80’s bridesmaids dress that one of the staff had given her as a hand-me-down from one of the other housemates – not really appropriate for a 21 year old in 2010. 

I have assignments due 6th (2000 word essay + interview transcription on Professional Communication Skills) and 8th (1000  in tongan about customs) then MD is up for the weekend 6th -10th (as its the closest to her birthday and SB will be away training).  She and I will take part volunteering in the Pink Ribbon appeal day on the 8th.  We also have to fit in a birthday lunch or dinner with the family while she is up.  I also want to volunteer for the WIMA ride on the morning of Sunday 10th.  On the 15th I have a 20 page assignment due for my ‘Treaty of Waitangi’ paper.  My plan is to really put my nose down , bum up and try to get as much done as possible before the 2nd (a week away) as I possibly can so that I can acheive both objectives. 

Then there is appointments with my breast surgeon on the 5th and my second Sweet Louise meeting (12th).  The first one went well with most people making me feel welcome –  but then I had to spoil it by having a dizzy spell in the middle of it – I joked that it was just to make sure they wouldn’t forget me as one of the newbies.  Ever since that last dizzy spell (17th) I have had an overwhelming feeling of lethargy which I am only just getting on top of now hence the rush now to get my assignments done.

I plan to do the same as last October and wear Breast Cancer survivor t-shirts every day to remind people that behind all the hype around Pink Ribbon there are individual lives forever changed by this life-threatening illness and I hope to spread the word about IBC (inflammatory breast cancer) – thats its not all about lumps while I’m doing it.

You probably wont see another post on here for the next couple of weeks

WELCOME

Hi and welcome to Get Out Gertrude – this is my main page and as such will have all my posts on any subject. If you are looking for posts I have posted in specific catergories  you can click the menu above the header picture – for example if you are looking for stories purely to do with Inflammatory Breast Cancer click on that heading – or want to read about trips/ travel click that heading.  My twitterstream to the right will both contain mini blogs in between my larger posts but also give you an insight into some of the other things I am interested in.  Medical info on inflammatory breast cancer can be found in the links to the side of this page and so on.  Thanks for stopping by!!

I’m a geek!

Some of you may already have known that LOL!!

The title of my blog is “Get Out Gertrude” the subtitle is “My battle with Inflammatory Breast Cancer and rediscovering normality” and I thought I would do a series of little posts about what normality means to me – although as I write this I remember a card OH once gave me that was along the line of ‘front of card’ – “I dont want a nice normal relationship” ‘inside’ “I like ours so much better.”

All this quake business really bought out the inner science geek in me.  I spent hours looking at the data at Geonet and plotting them on Google Earth. At first it was just trying to figure out where the quake and aftershocks were in relation to MD, SB, Bro, etc but along the way I actually realised how much I enjoyed the science side of it and it reminded me how interested I was in the whole earthquake/volcano natural sciences field.  I started following Sciblogs on twitter and generally embraced my inner science geek.  I was showing one of my uni friends S the work I had done tracking the aftershocks and was saying that I am interested in that sort of thing anyway and she turned round and said why on earth was I doing a Social Work degree but  I already know my science geekdom has already been invaluable in navigating my way through the medical jargon that surrounded both YD’s diagnosis of chromosome deletion but my own of Inflammatory Breast Cancer, and I know that is one of the strengths I’ve always brought into my work with other people – that I can understand the jargon and break it down into layman’s terms.

But wait there’s more – that is not my only claim to geekdom – I am also a bit of a language geek.  My children were made fun of at primary school by their peers for knowing big words like facetious and pedantic and using them appropriately – it became a bit of a running joke in our house for a while about whether they were being facetious or pedantic.  I love people who are clever with words such as xkcd .  My love of language hasn’t always shown through on this blog as chemobrain, stress , time constraints and so on often stop me from being as eloquent as I know I can be.

I am also in a small part a computer geek especially around the internet although by true internet/computer geeks I would be considered but a newbie.  But for my age (women of a certain age, hehehehe) and stage in life I am an oddity amongst my real life friends embracing such things as blogging and twitter.  Blank looks are the usual response I get to some comment I make about it.  I was also considered unusual for enjoying computer games from the first time I got a computer, my favourite games turnbased role playing strategy games such as CIV 3 or Heroes of Might and Magic 2.

But all this geekiness is part of who I am and part of the normality of  my past and present and future.  I embrace it and acknowledge that I am and forever will be a Geek.

Sweet Louise

I’ve just joined Sweet Louise this week.  This is a support network and services for woman with secondary or metastatic cancer.  I am both extremely happy and extremely sad to join this group. 

Why did I join when I am in remission again and hoping to stay there? Because I need to meet more women who are living with the same threat level that I am.  I joined the local Breast Cancer support group last year and have not made it to any meetings while I’ve been at Uni this year.  I attended my first meeting in about 8 months last week and was extremely disappointed in the other members attitudes towards me.  The group is a long established group with most of the members having been part of the group for 10 years or so.  They are for the most part early stage survivors.  Some of the group almost seem to actively avoid talking to me – as if aggressiveness of IBC or recurrence is catching or something.  Only three of the ten women that were there actually wanted to know anything about where I was at or even want to talk to me 1 on 1.  One woman that I did talk to  hadn’t known that I had had a recurrence and was still having chemo when I started uni this year.  And as soon as I bought it up she changed the subject… I came away from that meeting feeling more alone than ever. 

 My friends and family are wonderful and the IBC international support network on the internet  I belong to are equally supportive… but I long to meet more women face to face that are in the same place that I am in – that live under the same “threat level”.   And that is what Sweet Louise will bring me…. it doesn’t mean that I need to talk about it all the time or make it all about me… but that if it comes up in conversation I dont need to shy away from it either.  This is the bit that makes me very happy about joining.

The sad bit is that there was no question mark about me joining this group – If you self refer or get referred by the oncology department, you are not accepted unless someone in the medical profession has verified you have metastatic cancer.  Ever since I have had my recurrence I have been psychologically comforting myelf with “it’s just a regional recurrence – it’s not metastatic!”  and when my cancer society nurse suggested that I join ‘Sweet Louise’ at the diagnosis of my recurrence I was very sure I didn’t really fit the criteria for belonging. But deep down I have known that the way they are treating me, herceptin indefinitely – scans every 3 months is exactly the same as if it had spread to my other organs and they had got me back in remission and that medically I was regarded as metastatic  because the nodes that popped up in the recurrence hadnt been involved first time round.

I am going to go to my first meeting next Friday.  I’ll let you know how that goes.

The other interesting group I have been invited to join is ‘Mothers with Cancer’   this is a collective of women mainly in America who blog about their cancer journeys and the impacts it has on their families and their role as mothers.  Most of them have individual blogs like I have ‘Get Out Gertrude’ but they also post on the collective one.  I have followed this blog ever since diagnosis,  although my children are older and have now left home, to see how younger kids have managed or been managed to deal with their mothers illness because although YD is now 21, her functioning age is so much younger, and the same things fit with her that would fit with your average 5-8 year old. 

I haven’t done my first posts over there yet – that will probably happen in the next week or two.  I have to write an introduction to myself and tell my story thus far in a couple of paragraphs for introduction/profile page and my posts (stories)  there will be a mixture of posts that will appear on “Get Out Gertrude” too (cross- posted) and posts that are unique to the Mothers with Cancer blog. 

I’ll post my first post there on here as well so you can see it.

Arthritis is Good News !!!?!

Who would have thunk it.  I never thought having arthritis in my hip at the age of 47 would ever be classed in the good news catergory – but not only I, but other people I have shared this news with, have had the same reaction

“that’s’ good news”…”Awesome” …”yay” …”Great news” … “yea” … “hooray”…”so glad” …  “phew”….and widespread “liking” of the news as my facebook status was  the general gist of the feedback I got when I broadcast this news by cellphone text, twitter, facebook etc. Sure there were a few “shame about the arthritis” and similar statements tucked on as an afterthought.  But why this general celebration of arthritis as good news?

Because the alternative they were looking for in the scans was metastatic spread of my Inflammatory Breast Cancer to the bones in my hip, and compared to that, arthritis IS good news.

Other good news received yesterday from tests

Echocardiogram of my heart (to check for loss of function due to herceptin) – GREAT!!

Head MRI – CLEAR!

Chest, abdomen and pelvis CT scan – (apart from arthritic changes in both hips – right one being more advanced than my left )- everything else CLEAR!

They are still not sure what was causing my headaches and dizzy spells but as the doctor I saw (one of Dr H’s underlings) said we do know it isn’t cancer and that is a good thing.

They will do another chest/abdomen and pelvis scan in a few months time and echocardiogram in about in about 9 weeks. They are keeping a very close eye on me.  The doctor said they hope to keep me in remission for a very long time.  

I think I can live with that ♥ both literally and figuratively  ♥

P.S even with all the comfort eating I’ve been doing lately I’ve only put on 1kg – thats pretty good news too!

Shaken and stirred

aftershocks on 4th September colour coded in order of magnitude

Those of you who checked out this blog over the weekend may have noticed my twitter box was overrun by earthquake updates.  MD and SB, Bro etc were in the middle of the Christchurch earthquake zone. They were shaken – we were stirred up by worry. So instead of spending the weekend doing Uni assignments and getting stressed about my scan results on Tuesday (tomorrow) the weekend was taken over by awaiting news from them. 

MD rang as soon as the quake struck – even after living away from home for a year her first instinct was to call her mother.  She was without power for 36 hours but no damage was done to her house at the army camp thank goodness.  Bro had minor breakages at his house in suburban Christchurch.

They have had approximately 70 aftershocks that have registered on Geonet since the initial quake , 7.4 magnitude at 4.35am NZtime 4th September,  to make it more obvious to me where they were in relation to all the aftershocks I created images using Google Earth and the data from Geonet. The image above was the image of the 34 aftershocks to midnight (NZ time) on the 4th.

aftershocks on the 5th to 7.10pm
aftershocks on the 5th to 7.10pm colourcoded in order of magnitude

 

 
This image is purely the aftershocks felt yesterday (5th). The yellow push-pin in the centre of all the aftershocks is MD – Bro is the turquoise push-pin. The colours of the balloon tags indicate magnitude white are 3 – 4, yellow are 4 – 4.5, pink 4.5 – 5 turquoise 5- 5.5
MD has felt almost all of these.  When she saw these images  on Facebook after she had her power back on her reaction was ” omg.. we are surrounded by them! it did feel like we were though.”
 
We got a phone call from YD’s house on the Saturday morning and had to reassure YD that although she was seeing pictures of houses falling down MD was ok. 
When we spent time with OD and YD on Sunday for Father’s Day we tried to explain to YD what aftershocks were, and that they weren’t big ones that were breaking more buildings but that the ground was still shaking.  To explain what it felt like for MD we held her leg at the top (while she was sitting down) and shook it hard enough to shake her whole body.   I showed YD these images too, saying that for each of the balloons MD would have got shaken. YD thought she was definitely glad not to be down in Christchurch experiencing that.
As I was saying to S via email these events have made it  even more evident that mothering doesn’t stop when you have no children living at home.  No matter how old they are, I am still a mother to my girls.
 
Anyway I had better get back to the uni assignment (due next week) that I have neglected all weekend.
I’m far too busy to worry about scan results LOL