• Pages

  • comments

    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
  • Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 59 other followers

  • visitors

  • SUSAN’S ARMY

    No Princess Alone button

Irrelevant but not Irreverent

I have struggled to write this blog post, updating what happened at the oncologists last Wednesday, and have put it off until now because what is going on with me seems so inconsequential compared to what happened in Christchurch a week ago today.  At 12.51pm NZDT on 22nd February a 6.3 earthquake that was centred just outside Central Christchurch caused wide spread destruction and as of today the confirmed death toll is 154 with more still missing.

If you dont know New Zealand geography here’s images from Google Earth to explain where I live in relation to where Christchurch is. As you can see I live a fair way away from the earthquakes.  But New Zealand is a small country of only 4 million people and as such when a disaster of this magnitude strikes it brings us all together as if we were just one big village. 

I have ties to Christchurch – ‘Bro’ has lived down there for nearly 40 years ever since he first left home as a teenager.   Since I have started this blog I have written posts about visits there, in this post and this one and this one, as well as on the earthquake in September last year.  MD has just moved home from there , if she had stayed after the breakup with SB and with University starting last week she could have easily been in the central city when this devastating quake happened.

image of quakes in relation to Bro's house (and where MD used to live)

Bro and his family are OK but my heart was in my mouth for the few hours until I had found out that everyone I knew in Christchurch was safe.  I can only imagine what it was like for families actively caught up in the turmoil.  It is another reason I have hesitated to write about it as I am so aware that it is not my story as much as it is theirs.  The images in the newspaper and on television have been heartbreaking and I am only viewing them through a lens not experiencing it in reality.

image taken from the Port hills just after the quake

 

It was against this backdrop of national shock and mourning I had my oncology appointment on Wednesday.  I had been hoping for the all clear so I could start university this week with no extra scans, treatment etc to worry about.  Although it was good news on the lung and bone front they are now looking at another area of concern.It can best be summed up by a letter I had to write to my lecturers yesterday

“Subject: Keeping you advised of my health status
Although I have already had a quick chat to A on this subject I thought that advise you all in writing about the status of my health.  I had a ‘routine’ CT scan in December for them to check for another recurrence of my Inflammatory Breast Cancer (I have been in remission from first recurrence since May 2010 – initial diagnosis and treatment Aug 2008 to April 2009 recurrence September 2009).
 
We were expecting nothing but at my appointment in January they told me they did find a couple of points of concern (small spot on lung  and bone pain)  which required further investigation.  I had a followup appointment with my oncologist last week-  23rd of February, where we hoped to get the all clear for me starting University with nothing to worry about.  Although they have ruled out the spot on my lung being cancer and my bone scan being clear, they are now concerned about a shadow on my liver. 
 
they have booked me for an urgent CT to be done within 2 weeks of last Wednesday and depending on what it shows more follow up may be required.  If the shadow has disappeared then it isn’t cancer,  if it has stayed the same I am looking at having a liver biopsy to rule out cancer and if it has grown they will make the assumption without biopsy that it is Liver metastases and I will go back into active treatment instead of just being on 3 weekly infusions of Herceptin.
 
I am only part-time this semester doing Socwork papers 215 and 216 so even if I do need treatment I am hopeful of carrying on with study.  I may have to take time off over the next couple of weeks to get this sorted.  Hopefully I will get the all clear and be able to carry on the rest of the semester with no additional treatment, scans etc. 
 
I will keep you all posted as to what is happening.  Here’s hoping it’s nothing”
My over-riding thought since Wednesday is even though I am worried about this, it is nothing compared to the reality that many people are facing in Christchurch.  I’m still alive and my family is still all around me and for that I am extremely grateful.

Twice

Words have a lot of power, especially words around cancer,  and it was one of the reasons I had put off telling my family and friends who weren’t on Facebook or read my blog regularly that we are dealing with another scare.   In my Family post of last week – I was debating whether to tell my sisters that were over from Australia for niece S’s wedding whether or not I was waiting to hear about whether ‘Gertrude’ had metastasised to lung or bone.  In the end I did although I still hadn’t decided whether I would or not until the situation presented itself.  SisT bought a new boyfriend with her from Australia and they arrived after we did but ended up sitting directly in front of us.  She introduced me to L and then said “How are you going?” in a  concerned voice.  L  looked at her, silently questioning her concern, and she said “She’s had Breast Cancer twice” .   That took me aback because I don’t actually think of it that way and when she repeated the question my “I’m doing OK” reply didn’t come out with the level of conviction that I had intended.  So I told her that we were waiting to hear this week .  I then thought I had better tell SisH as well and did so after the ceremony, during the reception. 

OH visited his mother yesterday and told her and I told my friend S (who isn’t on Facebook) who had been texting me trying to arrange a catchup.  I then thought I better ring AE the only one of my closer Uni friends that I hadn’t talked to in the last week to check that she had seen it on Facebook or been told so it didn’t come as a shock to her. We are planning a get-together at the end of the week and I didn’t want her to feel left out if the topic came up (whether the news is good or bad)  – she had seen it on Facebook and been reading my blog but hadn’t commented so our conversation was easier than some of the others.

We discussed the way things are worded and the fact that although SisT uses “she has had Breast cancer twice” or OH told his boss in this post about “waiting to see whether her cancer has come back for the third time” – it’s not actually how I think of it. I feel that those words makes it seem worse than I actually perceive it.   As much as I acknowledge the recurrence I don’t so much think of it as a thing to count as a separate countable ‘entity’  I tend to think of it as more of a continuation of the same, that ‘Gertrude’ came back. Like wise I put myself as a IBC survivor not a 2x survivor although by some reckonings that’s what I am.

We then started to joke about the fact that I had jokingly thought that if ‘she’ was back this time I should change my blog’s name to ‘Get Out and Stay Out Gertrude’ because ‘she’ obviously isn’t getting the message.  That I should issue ‘her’ with a trespass notice or harassment order.  Thus words can make it seem less threatening. 

Words around cancer can be scary, but they don’t have to be.

Twitterholics Anonymous

One of the things I have been doing lately to fill in my time is explore the larger ‘twitterverse’.
It has been too hot and humid to do a lot of physical activity and with having a couple of weeks to wait for test results and the start of Uni classes I have played around on my computer a bit. Bored with Facebook games but not able to concentrate on more complex strategic computer games I like playing, I turned to my twitter account.
I joined twitter mainly to use it as a microblogging tool for my blog and I didn’t follow that many people or have many follow me. The ones I did follow were people like @whymommy who like me blogs about IBC (among other things). From @whymommy I got twitter-friends like @xtremeparenthood and @upsidebackwards. neither of who have cancer but who, to our mutual delight – well definitely mine anyway, have found out we have a lot in common.  I have developed real relationships with these people through many conversations on twitter.

One of my biggest stumbling blocks was that none of my IRL friends tweeted – mind you at 48 years old and not in the tech, internet or social media fields I am a bit of an oddity – Not many of my friends this age blog either.

I also followed information sites, news sites like @NZstuff and @nzherald.  Through the earthquake in Christchurch I added @geonet which meant I got information tweeted after every aftershock – I also started following a couple of other NZ ‘tweeps’ who tweeted about ‘#eqnz’ as it was known on twitter.  From there I started to realise there were a lot of other sites out there that had twitter feeds that I could follow that would satisfy my need for ‘geekfood’ as I called it.

Over January I started to look at adding more NZ ‘tweeps’ to my follow list and also through them realised there were a lot of shops and services I could follow as well . AND the good thing about following these shops and services twitterfeeds is that they do giveaways to their twitter followers.   So far I have got a beanbag – that MD has commandeered , and a 4-pack of pear cider – which I have enjoyed myself.  Yes, I know I am buying into being part of their marketing strategy but I dont mind.

I was a bit timid about twitter conversing with the people I had started to follow but to my surprise a large percentage of them started to follow me back and comment on my tweets,  which has made me less hesitant to do likewise. Real conversation ensues with people who I might not have ever bumped into in real life.  This week I have actively been reading up on how to use twitter more ‘effectively’ or the ‘right’ way thanks to @vaughndavis and @simonemccallum blog posts about it.  And I am pleased to know that I am ‘doing it right’ or at least right for me

So I have replaced my Facebook addiction with a twitter addiction

So here I stand: “Hi my name is jaydub26 and I am a twitter addict!” LOL

Family

Tomorrow afternoon my niece S gets married and J officially becomes part of the family although it seems that he’s been part of it forever.  I am so happy for them.  It will also mean a gathering of my family altogether, for the first time in ages.  

I am number 5 of 7 children.  I have 1 brother and 5 sisters (4 living, my sister next oldest to me in age died in a car accicdent in 1983 – in between SisM’s and my weddings – she was 25)  As I wrote that it made me think how often I just say I have 4 sisters to avoid the explanation.

S’s wedding will be the biggest gathering of family since my Mum’s funeral in 2004.  When we have all been in the same place at the same time.  We have had gatherings in that time but there has always been a person or two missing.  We are spread all over NZ and Australia – Melbourne, Brisbane, Christchurch, Auckland etc.

Its times like this I miss my mum.  She was diagnosed with metastatic cancer in January 2004 (unknown primary – possibly ovarian or other ‘female’  cancer but not known for sure).  She only lived 7 weeks from diagnosis. 

Before she died she was the lynchpin of the family – as there is  a 17 year span of ages we the children weren’t necessarily close growing up but Mum was the one that kept us tied to each other.  Since she has died we have had to forge those links for ourselves and we have and I think she would be proud of us. 

One thing that does worry me about tomorrow is that I don’t know if my ‘Australian’ sisters know about my recent scare and that we are still waiting for results, they read my blog but with busy lives and assuming that things were good with me they may not have read it lately.  I do intend to let them know if there is ‘something’ to know – i.e. if I am going back into treatment.  

I got told off yesterday by my uni friend N for not letting her know – she isn’t on fb or my blog as she doesnt like computers very much – but while it is only a scare and not a definite thing – I didn’t want to message everyone and have them worry along with me.  I also haven’t told my MIL or any of OH’s side of the family.  Again, I dont know if any of them have checked my blog lately. 

As I said to N yesterday – I dont like ringing or messaging and going “by the way I’ve had another scare”.  I think I am a bit of a coward.  I hide behind facebook and my blog so I don’t have to deal with telling people in real life.  As I was saying to N I think its the introvert in me – when I’m stressed I find it harder to be around people and let people in.

Hopefully next Wednesday,  we will get good news and then I’ll be able to go “yeah I’ve had a scare but it turned out to be all good, nothing to worry about”.  I feel much more comfortable telling my MIL, and my sisters that than “I’ve had a scare and we’re still waiting to find out.”

Is there a right way or wrong way to handle this? – I don’t know – I’m just handling it the best way I know how.

Smiles

Just thought I would share some things that have made me smile this week.

1.  This statue in the Domain

the statue in the middle is wearing sunglasses!!

2. Late in the season ducklings

Ducklings

 I also found the the most amazing poem written by  Lauren Hammons Groover that has become my latest tool for inspiration  I have put the first  verse but urge you to go to Live for Lauren to read the whole poem – I read it out loud to OH and he really like it too.

“Here’s to facing down the demons,
For living with the foe.
For comforting our loved ones
When fear is all we know.”
 

how not to wait…

Still waiting for news of review of my CT scan I had decided to assume ‘no news was good news’ as  Dr H  had said they would let me know if my treatment had to change due to what showed on CT or bonescan.  However after going to the lyphodema therapist and her postponing treatment until she got an all-clear from the oncologist meant that I had to bring the subject up with my nurses at last weeks herceptin infusion appointment.  They couldn’t/wouldn’t tell me anything but resceduled me to see  Dr H for an assessment appointment on the 23rd February.  I have to admit my mind had a field day as I said to ‘the MRD’ in an email the next day ” do they know something I dont know” “if my review of the scan on my lung was clear then why can’t they just tell me” etc…etc…etc

I’m still assuming the best but also a little part of my mind is ‘preparing for the worst’ as well.  I have my bone scan tomorrow and as long as that goes well I am hopeful of an all-clear on the 23rd.

This last week I haven’t been proud of myself.  I used the excuse of my hip hurting from bellydancing  , but in reality I was just sitting on my bum eating junkfood and allowing myself to wallow in worry and depression.  What broke that pattern was having to get out of the house on Thursday for my herceptin, and a deadline for the AFS chapter newsletter that I write.  I have been busy and not wallowing for the second half of the week. 

Yesterday OD and I had decided to drive down to Mount Maunganui for the day. Our mutual twitter friend , Really Really Design was selling her wares at a Market and we decided to do  a little roadtrip down.  We had a ball, stopping for brunch at Matamata ( can definitely recommend going off the main street a few doors down to The Horseman Cafe on Arawa St), going to the Little Big Market, getting great bargains in the sales in the Mount’s main street, then winding down at the beach on the harbour side, Pilot Bay -there was a  big surf carnival happening on Ocean Beach

view of the Mount and bay from our spot on Pilot Bay

going for a wade in the water

We came home singing along to the CD on the car stereo (No, not going to tell you which CD, LOL) before having to do a quick detour to Ngatea when the petrol light came on just before we got to ‘the 35’s’ (SH 27)  All in all away from home for over 12 hours (with over 2 hours driving (me) each way) so it wasn’t surprising when I slept in this morning until 11 am.

Today although I’m having a slow afternoon I have already arranged to go for a walk in the Botanical Gardens with OH this evening, once the heat/humidity goes out of the day a bit. 

My bone scan is tomorrow and I will take the train in then decide where to take my radioactive self for 3 hours between when they inject me with the isotopes and when they actually do the scan.  Should I walk in the domain or should I go shopping ? Maybe a bit of both…