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  • 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

Hips don’t lie

In my case – they don’t like belly dancing either.  LOL  I have always wanted to take some classes and thought it might be gentle enough exercise for me to handle.  Well, I found out on Sunday that is not the case.

My wonderful niece S had her hen’s party on Sunday, and what a fun time it was.  I really enjoyed myself.  As part of the afternoon entertainment D, her bridesmaid, had organised a group belly dancing lesson.  It was so much fun and easier than expected but my ‘arthritic’ hip soon let me know it didn’t like me shimmying around.  I was so disappointed but laughter still ensued as my daughters couldn’t resist roping their male cousin N to try the moves.  They always pick on him – and he lets them.  It didn’t hurt that we had all had some alcohol to lessen our inhibitions about making fools of ourselves. 

I wouldn’t be at all surprised if some of the younger ones try some of the moves when they are out clubbing next. 

The second part of the afternoon evening was going to the twilight horse races.

We all had $5 with which to bet as a little competition and I was one of the two that actually came home with money left – a whole $2!!  MD lost all hers on the first race so I gave her $4 to bet on the second.  Somehow she managed to turn that into $90 by the end of the night.  I hadn’t been to the races all the years that the kids were at home and I had forgotten how much fun it is.  You do need to go with a specific betting limit in mind, but even with small $1 or$2 each way bets it is still a fun time. 

Because the focus was on S and rightly so, again it was an outing where I didn’t have to chat to people about much else so again it was a day where the ‘Im fine’ response was sufficient and comfortable. 

Everyone is so looking forward to S’s wedding in a few weeks time.  Her and J are really well matched and will be very happy together.

Apologies to Shakira for nicking her song name for the title of this blog post

Surprise

The second of my weekend outings was to a surprise party for a family friend’s fiftieth birthday.  L and her family first came into our lives as respite carers for YD in 1997. Her daughters and OD and MD are much the same ages – so for the few years that YD went to stay at their house once a month – it was an easy transition for her.  L is now the manager of the residential service houses that YD lives in, and I found it easier to help  YD make the decision to leave home knowing L, and  knowing that she had YD’s best interests at heart.

A few weeks ago I got a Facebook private event invite from L’s oldest daughter N – surprise party! – although YD has her own Facebook profile (which she manages with help but makes her feel more like her big sisters) and could have been invited through Facebook as well N decided wisely to only invite OD and myself through Facebook and let us fill everyone else in on the plan. 

Ok – here’s where I’m trying to figure out how to tell YD that we were doing something without letting the cat out of the bag .  YD likes routines and structure and likes to know well ahead of time what we are doing when she comes home for the weekend visits. 

ME:   ok -next weekend instead of mum seeing you on Sunday you are going to stay Saturday night.

YD: why?

ME: because I’ve got to go to S’s on Sunday afternoon for her hens party

YD: Why aren’t I invited?

MD: because we will be talking about sex

YD:  OOH yuck, I don’t want to go!

YD: what are we going to do on Saturday?

ME: we will probably go out somewhere – I haven’t decided where yet – depends on the weather (helps we have had a few summer storms lately) but don’t worry we will definitely go out somewhere -probably at least shopping on Saturday afternoon (to buy L’s present- see I was trying not to lie)

– and that was as much as I could tell her til Saturday afternoon when I picked her up.  If she had known she would never have kept it a secret and with L popping in and out of YD’s house all the time to check on things we just couldn’t risk it.  So I also had do all the preparation work in what we expected of her behaviour on Saturday as well

Once we told YD she loved the idea but when we got to the venue it was a little bit hard to keep her confined to a small area until L arrived – we couldn’t risk YD wandering around outside when L was due to arrive – it would spoil the surprise. Once L arrived it was fine and a great night was had by all.  I didn’t have the same issue as Friday night of saying I was fine because I either knew people or I didn’t and we tended to be a bit ‘cliquey’ as that is what makes YD happier as well – having to interact with people she doesn’t know throws her a bit.

Happy Birthday L – so glad to have you as one of YD’s other mothers  – sorry for lying to you last week.

Making assumptions

Well I havent heard anything back from the Oncologist about the review of the lung spot on my CT scan so we are assuming that they have decided that its nothing to worry about.  We assume that if it had been anything that they would have got back to us by now.  We do not want to assume that they are just waiting for me to have my bonescan (scheduled for next Monday) before telling me because the bonescan results may effect treatment. 

Gee – there’s a lot of assumptions made in that first paragraph  – isnt there?  Lets hope all those statements prove to be true.  Even with those assumptions, we still can’t go ahead and make any plans before I’ve had my all clear from my bone scan. 

I went to see a new (more local) lymphodema therapist last week and she did an assessment but would not do any treatment without the express permission of my oncologist as one of the reasons they are doing the bone scan is groin pain she does not want to push lymph fluid towards  already compromised groin lymph nodes. 

I had a really good weekend with lots of outings but I actually got quite down at the first one I went to which was a belated Christmas dinner for OH’s work on Friday.  Most of his workmates don’t know we are dealing with another scare and we dont want to tell everyone unless I do go back into treatment.  After a while I went and sat by myself just to regroup.  CH who is my friend as well as OHs came over and I was telling him that I was tired of saying “I’m fine” when everything is so up in the air.  He knew most of the story from OH but when I told him the rest of it his reaction was to use expletives.  I have to admit I need people to swear on my behalf sometimes.  I also appreciated it when I told AW the news her first reaction was “well, that sucks!”  Postivity is all well and good but the truth is cancer and living under the cloud of recurrences does indeed suck.

It’s even harder talking to the partners of his workmates that may know nothing about “Gertrude”.  Case in point being when we sat down for dinner and ended up next to the new plant manager and his wife.  He knew that OH was taking a significant amount of holiday time off in February, and assumed (there’s that word again) we had something planned.  OH tried to fend off the questions of how we were spending that time but the boss pushed for specifics – OH is looking at me with an ‘oh shit, what do I tell him’ look on his face and I said you may as well go ahead and tell them – we were at the end of the table so I knew it was going to remain in amongst the 4 of us. “well we have to wait and see whether her cancer has come back for the 3rd time”  was not the answer they were expecting.

Great icebreaker – don’t you think.

Anyway I hope to hear within the next week or so whether my positive assumptions were correct.

Mental Armour

Some of you who have been on my blog in the past day or so may have seen over on the right hand side a new addition, a ‘button’ that shows a lego princess and the words – “No Princess fights alone” .  You may have wondered what it was doing there.  If you click on the picture it takes you to the post that explains it.  This Princess is part of Susan (WhyMommy’s) mental armour and she calls it the Princess-who- can-defend-herself and it sits on her desk.  One of Susans blogger friends in the States created this button as a way of showing that although she is a ‘Princess who can defend herself’  there is an army of supporters behind her and I am one of  them.

But Susan’s post and a few other things got me thinking about the mental armour we metaphorically gird our loins with and go into battle against cancer.  A lot of us like Susan have things that remind us to stay strong because it is ultimately us fighting the battle.  One of them is knowing that we have the love and support of friends and family,  another is making contact with others that are fighting IBC or other advanced breast cancer.  I have 46 friends on facebook that I have never met (apart from S) that like me have had or are currently battling IBC.  Yes, they may only be ‘facebook friends’  but we share a common experience that has given us a bond far beyond a purely internet one.  Admittedly there are a few on that list that have died but I keep them on that list as a way of honoring their memories (just as their families have kept their facebook profiles alive for the same reason). 

Sprucehill in her latest post talks about being friends with people all over the world and them being available at just a click of a mouse. And that is the way I feel about the friendships I have made through the IBC support mailing list, Facebook, and twitter and knowing that they are there adds to my mental armour’s strength.

Like Susan I too have physical things that add to that mental armour.  In my blog’s header photo montage there is pictures of the bracelets I wear every day.  Its almost a ritual when I get dressed: foob on, lymphodema sleeve on,  bracelets on.

On my left arm I wear my charm bead bracelets – one is my grown up version of the child cancer beads and the other one is other special events/achievements since diagnosis – in 2010 I added two beads to the cancer one ‘ finishing vinorelbine’ and ‘remission’ and added 4 to the other ‘finishing 1st semester of uni’, ‘trip to Samoa’, ‘finishing second semester’ and ‘having a normal christmas’.  As much as the ‘cancer’ beads remind me of the cancer they also remind me I’m strong enough to have gone through all that. 

On my other arm over my lymphodema sleeve (very effectively blurring the demarcation of sleeve and skin so people actually don’t realise I am wearing a sleeve at first) I wear the ‘serenity prayer’ to remind me that there are things  I can change and things I can’t and basically to “just deal with it.” Recently added to sit beside that bracelet is another that AW gave me for Christmas with the Maori words ‘Kia kaha’ on the outside of the links and the English translation “stand strong” on the inside. 

Serenity and Kia Kaha bracelets

Serenity and Kia Kaha bracelets

 

She gave it to me for being a strong brave amazing woman but my feelings on that which I also said to CPM when she said something very similar to me the other day was that I dont think that I’m any braver, stronger, or any more amazing than the average woman – I am just doing what I have to to get through, to carry on living my life the best way I know how, and I think most woman I know would find that they too have a supply of mental armour that they never knew about.

As I typed that last sentence I had a vision of our mental armour being like an invisible forcefield we dont even know we’ve got – its not ’til the bullets starting flying and some bounce off that we realise we have it and that it starts to show itself – yes I’m a sci-fi geek but you’ve all seen movies where the forcefield glows as things hit it and is otherwise invisible.

So here I sit waiting for news but with my mental armour as my forcefield and glad that I am a small link in the chain mail of Susan’s armour

Nobody fights alone.

the voices in my head

We all have little voices inside our heads – some talk a little louder than others.  Im not talking about schizophrenia or delusions or multiple personality disorder I’m talking about the thoughts we wrestle with – the conversations we have within the confines of our own heads between the two (or more opinions) we may have for any situation we are facing.

For the purposes of this blog post I will call these voices (opposing trains of thought) acronyms of PAJ (Polly-Anna Jaydub)  SRJ (for sane rational Jaydub) and WSWI (worried s***less What-ifs) – although some of you who know me in real life may go “who is this SRJ of whom she speaks?” -LOL.

PAJ:  Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ:  There is definitely something showing on my lung but it may not be cancer.  And if it is thats ok, it just means more treatment.  People live a long time with cancer as a chronic illness these days.

WSWI: but what if it is cancer and what if the treatment doesnt work and what about the fact you have just developed a cough and what happens to going back to uni – you’ll be too sick if you are having chemo again…..

PAJ and SRJ :  SHUT UP!!!

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ: If it is something we will deal with it.  If it is something we will deal with whatever treatment I need.  Hopefully if its chemo it will continue to be at the end of the week and I will be able to go to Uni at the beginning of the week for my classes at least this coming semester – I did when I was on vinorelbine…

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ:  You’re right it may be nothing but we also have to acknowledge that it may be something.

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ: I dont mind your positivity but your singing is getting on my nerves.

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

WSWI:  SHUT UP PAJ – you dont know anything!!  you are just refusing to acknowledge that we could die from this. and what about the fact OH and us were going to go away the end of February on holiday before uni starts and now we can’t do anything.

SRJ:  I’ve already booked a few days away for our wedding anniversary at the beginning of March – I start Uni the beginnning of that week too.  Even if I have to have more tests or anything the 3rd -6th of March and the 18th February (niece S’s wedding) are just going to have to be worked around by the hospital.  They may decide they just want to monitor the lung and rescan to see if it develops into anything they need to worry about.

WSWI: but what about the trip to Dreamworld you’ve promised YD – that’s supposed to be happening in July….

PAJ and SRJ:  SHUT UP!!!

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ: It is hopefully nothing but I am also being very careful about how I phrase things to YD – due to her autistic tendencies she is very fixated on both her birthday in April and this trip.  The trip will still happen – OH and I were talking this morning about starting to arrange it and possibly sitting down with a travel agents and asking the questions about if I couldn’t go for any reason how easy it would be to change the name on the ticket.

WSWI:  you know you still haven’t got round to updating your will…you did it before YD was born and now you have to make sure her inheritance is held in trust for her as she won’t be able to manage her own finances the way OD and MD can

PAJ and SRJ:  SHUT UP!!

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

SRJ:  It’s on the list of things that OH and I have to get round to – we may look at doing it while he has a few weeks off February/March.

PAJ: Its nothing, its nothing, its nothing!!! laladeeedeedah!

So there you have it folks –  a look inside my mind.  As I was writing this I had the image of doing it as a puppet show – I’ve tried to make it light-hearted but at the same time this is very real to me.  I am at the point where if there is something on my lung I cross the barrier of having regional recurrences to being truly metastatic.  Where the aim turns from cure to control.  Whymommy and Annie have written really good posts on this and I urge you to go and read their words too for a deeper understanding of what I might face.  There are also people like Joanna who were metastatic (a spot on her lungs) at diagnosis and who is living with no physical evidence of disease since initial treatment but who will remain in treatment to make sure she stays there.  I do find her to be living a little too much in denial for my tastes but I acknowledge that each of us has our own way of dealing with the situation and what works for her, works for her.  I prefer to be positive but realistic and I think to fool you blog readers into thinking I am some strong, brave, amazing person who never has doubts is being untrue to you but even more importantly untrue to myself.  The reason I write this blog is both to let people know what is going on but it has also been my therapy – it is the way I process things and get things sorted out more in my head so that WSWI doesnt get too loud.

Most of the time SRJ wins out over any other voice and it is the voice I ultimately think is my true self.

Waiting….

just letting you all know Im still waiting on news for bonescan scheduling and whether or not they have reviewed CT will let you all know when I know anything ….Waiting @#$@%^ sucks

I just put this as my facebook status and then thought I would post it here as well but I also wanted to acknowledge that I am grateful for doing this sort of waiting. There was an article tweeted by the New Zealand Herald about  the misdiagnosis of another woman with breast cancer who has just died – in a conversation with OD I said I was grateful that my GP had sent me off to the specialist when he realised he didnt know what he was dealing with (a week after the presentation of ‘Gertrude’) and I am grateful that my oncologist is being so thorough in keeping an eye on me for recurrences and metastases

So I will sit and wait – grateful that they are looking after my best interests in a way that will hopefully keep me alive for a long while to come.  Caro Galloway never got that chance.

Probably nothing…

Well.. I got to see Dr H today.  I don’t always see him a lot of the time I see one of his underlings.  OH came with me and we had expected to hear that my CT results were back and fine….The thing is if they are fine they usually tell you straight off the bat.  Along the lines of “Hi how are you?, well your  CT was fine” sort of thing.  When he wanted to examine me and wasn’t mentioning the scan at all, my heart started to sink.  It wasn’t till I was off the bed and sitting back on the chair that he started to talk about it.  Apparently there is a small spot in my right lung that hasnt been in previous scans – My oncologist want to review the scan with the radiologists to see if they need to take further action.  I also mentioned that my ‘arthritic hip’ was playing up and that I was getting quite a lot of groin pain on my right side and that one of my top ribs was aching more than usual.  I was putting this down to being more active – both getting more exercise and being busy getting YD settled into her new residential services house.  Unfortunately Dr H decided it was worth checking my hip out again via bone scan – when they had diagnosed arthritis it was just by xray and CT.  We are hoping that all the tests/ reviews come back clear and in the meantime he has booked the next couple of herceptins to carry on with  but warned me that that may change depending on what they decide they see in the scans. 

This leaves me hanging in limbo until the results come back.  I deal with things much better when I know things for definite, even if it is bad news.  We are still hopeful it isn’t going to be bad but it is hard to start planning what we are going to do in February when OH was having his holiday time off when we don’t know whether my 3 weekly schedule of herceptin is going to change or whether I will be required to be around for more tests/treatment.   Arrggghhh Frustration!!!!

I have to admit that it is one of the things I struggle with in my post -Gertrude life.  that my life has to revolve around, as one of the women from Sweet Louise put it , a medical diary… that our lives are ruled by when we need to be at the hospital for tests, for treatment, and oncologist appointments and that the rest of our lives have to be slotted around that.

Hopefully I will get the bonescan within the next couple of weeks and it will show just arthritic changes.  If they also decide that the spot on my lung is nothing to worry about then it will just be business as usual with herceptin every 3 weeks and more tests in a few months.

Here’s hoping thats what happens.

Pets

As well as MD moving home we have a new 4-legged housemate too as she bought her dog (Halo) with her.  The cats are not amused….

Santa Paws aka halo

So briefly the household menagerie held a dog, two cats and a rabbit.

Morph in 2004 already 3years old

  Unfortunately 2 days ago our 9 year old rabbit Morpheus (69 in bunny years) died unexpectedly.  Halo and Morpheus had made friends and would sniff each other through the cage bars and Morpheus showed no fear or alarm at this new inhabitant of the back yard.  We buried Morpheus under one of our grapevines where his cage used to hang out in the shade in the summertime.  It has been sad to see his cage empty. OH who was with him when he died and OD (who had received him as a present to get through a first-love break up) were particualrly upset.  But the interesting thing to watch has been Halo’s reaction – yesterday she constantly went to the cage to check if Morpheus had come out of his house to play.  And today she seemed quite listless as if she was pining for him.  It was quite sweet but sad at the same time.

Gemma and Montie (the two cats) don’t want to hang out with the dog and give it a wide berth so I feel like Halo has lost a friend.

Blog stats: 2010 in review

Thought this made interesting reading – I have no idea of the real number of people who read my blog as it counts repeat visits as well but it was interesting all the same

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

 

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 4,900 times in 2010. That’s about 12 full 747s.

In 2010, there were 63 new posts, growing the total archive of this blog to 181 posts. There were 84 pictures uploaded, taking up a total of 65mb. That’s about 2 pictures per week.

The busiest day of the year was October 28th with 108 views. The most popular post that day was Real Breast Cancer Awareness Part IV.

Where did they come from?

The top referring sites in 2010 were facebook.com, motherswithcancer.wordpress.com, twitter.com, mrsnavywife.blogspot.com, and ibcsupport.org.

Some visitors came searching, mostly for get out gertrude, boob jokes, getoutgertrude, canterbury earthquake, and irony jokes.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Real Breast Cancer Awareness Part IV October 2010
3 comments

2

Irony and bad boob jokes August 2008
2 comments

3

Before Gertrude August 2008
1 comment

4

In the Pink – part IV – pink wings, purple hair!! October 2009
2 comments

5

Samoa holiday – Savaii – Days 4-8 July 2010
1 comment

I am always amused at some of the random visitors I get – my site stats that I can access whenever I log in always tell me what the searches for the previous two days have been – purple hair, aunties bra, and Savaii holidays have been some of the recent searches but some of the others have been hilarious but with chemo brain I have forgotten what they were exactly – shall have to start making a list.  I always think at least one more random person has found out about IBC