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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

The rest of October

This is more of a journal entry of the things I did in October.  A month ago I wrote that I felt like I was juggling a lot of balls in the air and that feeling hasn’t changed.  I managed to get all my assignments done although I don’t feel I did them well and the first mark from them that I got back yesterday (a B-) shows that I have been not quite on top of my game.  However I said at the beginning of the year my goal was to just pass the papers this year even if I only got a ‘C’ so I am not going to beat myself up about it.

The lethargy I have been feeling since the middle of September is still there and I am struggling with study for my exams next week.  I also have an echocardiogram for my heart function next week, and I can’t help wondering whether the lethargy is related to that.

I managed to both do my assignments and take part in the Breast Cancer Action Month activities that I wanted to.  I surprised myself by managing the 5km Dove Pink Star Walk around the domain quite well and even managing to walk the couple of kilometres back to the car afterwards.

Dove Pink Star Walk

I helped with the WIMA Ride, selling raffle tickets and other behind the scenes organisation on the day

Over 500 bikes with pink ribbons at the start of the WIMA ride

 

And MD and Halo (her dog) helped me with a 3-4 hr shift with the Pink Ribbon Street Appeal

Even the dog wore pink for the Pink Ribbon appeal

Oh well I had better get back to study LOL

Real Breast Cancer Awareness Part IV

My reality

Warning : one for the TMI files

For part IV of this series I am doing a little photo essay on my reality, my journey with IBC in which you will get to see pictures of “Gertrude” as she was as I was going through initial treatment and also my mastectomy scar etc –

Once upon a time (July 2008 to be precise)  I was 45 years old getting used to YD not living at home.  I had long curly hair

I was overweight and had rather large breasts. I had been proactive and had a mammogram at 42 years of age (before the free screening age) and had always kept an eye one my breasts -felt for lumps etc and so was feeling confident that I was not at any great risk of anything creeping up on me,  that I would find any breast cancer before it got too far.

 WRONG!!!

 I knew nothing of Inflammatory Breast Cancer so when my breast blew up all big red and funny looking,  I had  no idea that I was looking at cancer – “didn’t have a clue what it was but it couldn’t be cancer” -you can read more of my diagnosis story here -very soon I was sitting here

first chemo

My breast  to quote my official diagnosis in medical jargon was oedematous and erythematous with erythema over at least 75% of it.  In layman’s terms that translates to had a swollen and red breast with redness over at least 3/4 of my breast. My nipple had inverted and the aureole around was raised, puckered and had changed colour

The Infamous Gertrude

The picture above  is of Gertrude  just after I had my third of 6 taxotere and herceptin treatments the breast has subsided a little bit and my aureole around my nipple doesnt look as bad as it did but I had had to go from a G cup underwire bra to an H cup maternity bra just to get something that was soft and supportive enough to wear while I was having treatment as they weren’t going to perform a mastectomy until it was more under control. 

 The picture below is of both my breasts for comparison. The marks on the side of  ‘Gertrude’ show that even wearing the bigger bra size, after a day of activity there was more swelling and even that bra pushed into the swelling in my skin.  The bump in my skin above my other breast is where they inserted the portacath.

For comparison:abnormal and normal

I never completely lost my hair – in this picture I was due a ‘haircut’ of the soft gray fuzz that was left. – wouldn’t you know it – it was only the gray hairs that didnt fall out

In April 2009 I underwent a mastectomy and axillary node removal– I had a reduction and a benign lump taken out of my remaining breast and now wear a prosthetic silicon breast in my bra – so that when  I am out and about in public people see this

However when I am at home and want to be comfortable quite often I will walk around without a bra and therefore one-boobed

And when I look in the mirror when I am getting dressed this is what I see – the scar reaches from my breastbone, round beneath my armpit and finishes around on my back –you can just see the end of it to the left of the side-on picture

front on view of scar

side on view of scar

Why have I put these pictures on my blog – because I felt it was time to.  As much as I tell people that my breast blew up etc they have no real concept of what that meant. I know there are a few other pictures out there on the web but in the interests of me keeping the theme of real breast cancer awareness I thought I would put what it was/is really like for me in the hopes it will help someone else.

I also know that some people I know IRL are interested in what my scars look like but don’t want to ask to see them so here they can look and I won’t know unless they leave a comment .  LOL Since being diagnosed I have lost a lot of my inhibitions about things like this.  I had an appointment at the beginning of October 2010 with my breast specialist that had originally diagnosed me and we were discussing the fact that taking my top off and letting doctors and medical students look at my chest has become quite routine for me.

And that after one recurrence already they are keeping such a close eye on me that isn’t going to change anytime soon … and every three weeks I am sitting in one of those chemo chairs, just like I first did August 2008, doing my best to insure it doesn’t come back.

Real Breast Cancer Awareness Part III

Is Awareness still needed?

Yes, Yes, Yes!!

Although the New Zealand Breast Cancer Foundation includes looking for other symptoms in its breast cancer awareness campaigns now, for many years the message has been “have mammograms and look for lumps.”

As you know if you have been following me on this blog, or facebook, or twitter,  I have used this month to do a little personal breast cancer awareness campaign of my own.  I wore my t-shirts with the captions as seen in my header picture, the ‘no, they’re not real’ and ‘my to-do-list’.  I bought myself another one that said ‘I survived breast cancer and all I got is this lousy t-shirt’  and wore them to my classes and on the train and when I was out and about.  In me doing this it sparked conversations around my journey as a survivor, Inflammatory Breast Cancer,  and Breast Cancer in general and popular misconceptions kept popping up in the conversations.

I am not blaming people because I was guilty of some of these misconceptions myself before being diagnosed.  I’m just saying that I think there needs to be re-education because people aren’t taking any notice of the new awareness campaigns because they think they already know. 

The common misconceptions are as follows:

1) That all breast cancer can be ‘cured’ by finding a lump, having a lumpectomy (or mastectomy if you chose) and chemo and/or radiation and then you’ll be fine.  That if it has spread further than that it’s because you didnt take notice of the lump in time or that it is several years after original diagnosis that it reappears in other organs.

This misconception presumes that all breast cancers are slow growing.  However aggressive breast cancer, IBC included, can grow within weeks and months and by the time a lump, or in the case of IBC – other symptoms, become obvious the cancer has already spread further than the breast.  It is also the case that the lump itself may not grow that big but the cancer will spread to the lymph nodes or further afield. This misconception also places the blame on the breast cancer survivor for their ‘lack of diligence’ in not picking it up sooner.  If you are a fighter/survivor of an aggressive form of Breast Cancer the last thing you need is people making stupid remarks about the fact you should have been more watchful.  When I tell my story of IBC you can just tell perspectives are shifting in peoples minds because I also talk about there are other aggressive forms of breast cancer out there.  “Oh I thought they were all the same!  – that Breast cancer was breast cancer – (and all grew at the same slow speed)” is the general gest of comments from a conversation about this misconception.

2) that it is all about having mammograms and that if you have them when you reach the age of free screening you’ll be fine.

People are making the mistake that mammograms are a preventative tool not a diagnostic tools.  Sorry folks , by the time the mammogram picks up that tiny lump in your breast, you already have cancer.  Having mammograms will not prevent you from having cancer it will just pick it up at an earlier stage than the naked eye or feeling your breast can . 

3) Thats its an older ladies disease.

With all the publicity about the free screening programme for 45 -69 year olds in New Zealand, women are becoming complacent about it not happening to them any younger than that. – I know at 45 I was guilty of that assumption myself ‘that I was just at the early risk stage of having cancer but it happens to ladies much older than me’.  And as I had had a preemptive paid mammogram at the age of 42 – I was going to be fine.  Although 3/4 of the cases of breast cancer occur in women over 50, unfortunately younger premenopausal women’s breast cancer tends to be more aggressive.  Its funny when I tell people that I was 45 at diagnosis, the usual response is “Wow you were really young” but the fact is I am postively ancient compared to those women in their 30’s  I know that have been diagnosed. 

One of the spokespeople that the NZBCF has used this year is Helena McAlpine who was diagnosed at the age of 31, and I think using her as a spokesperson is a good idea as it shows that it doesn’t just happen to older women – our grandmas our aunties our mothers – it can happen to us.

I don’t know what the solution to the apathy to awareness is.  Is it just a case of no matter what we do younger women will still be oblivious to the risks to them?  The trouble is that is young women in fact need to be more aware of their breasts (in a medical awareness way)  – their cancers tend to be faster growing, they dont have the free screening to find lumps before they are obvious to the feel, and it scares me that they possibly wont get help before its too late.  I know the breast cancer campaigns dont want to worry women unduly but my point of view is I would rather be scared than dead. 

I personally would like to see an ad campaign next year that targets younger women, that says as a slogan ‘its not just about lumps’ and really jolts our complacency and preconception that it is only “slow-growing lumps and breast screening when you reach 45”  I know that it is aimed at only approximately 25 % of the possible breast cancer population but to my mind thats the portion that needs the most awareness done now.

Real Breast Cancer Awareness Part II

How do Breast Cancer fighters / survivors feel?

So much pink in October is also quite hard to for Breast cancer survivors  to handle at times.  While those that have finished treatment and have a good prognosis for a complete ‘cure’ either embrace it or ignore it, for those with a more complicated relationship with breast cancer  it is quite hard to know how to handle all the reminders.

My friend TLA sums it up this way  “I know for myself, I wish I could be on an island the month of Oct and not see anyone. People who wouldn’t even look at me when I was in treatment, let alone do anything to help me, are awash in pink. They care! Really? See I am a care in action person. Now I am the first to say that some care is invisible, like the men and women who told me I was in their daily rosary devotions, something not so visible, but very important. Some care is more visible. But my friends point is that just sticking a ribbon on it, when that is all that is done, only hurts women as it has become a feel good, meaningless symbol of caring.”

I had just been told the cancer had come back at the beginning of  October 2009 and I had to make a conscious decision on how I was going to deal with it.  I chose to take part in some fundraising activities but at the same time it was hard to deal with the advertisements on TV, the pink ribbon sales pitches,  and all the other constant reminders that I had breast cancer. 

Even some of the breast cancer charities themselves get it wrong sometimes.  The  Breast Cancer Research Trust have had two advertising campaigns in recent years that I took offense at.  While I admire their commitment to finding a cure their “Seriously, breast cancer’s not a big deal” in June 2009 really touched a nerve with me and even when they add the tag line “because we are going to find a cure in 10 years ”  it didn’t really mollify me.  And then their replacement campaign still pushing the 10 year cure wasn’t much better

You see for people like me, who’s already had one recurrence, or my other friends with recurrent or metastatic breast cancer especially IBC we don’t even know whether we are going to be around in 10 years time   and they also don’t mention that for aggressive breast cancer the ‘cure’ will still involve such life and body altering things as mastectomies and chemotherapy.  No big deal – I think not. 

Also they said such things as ‘will find a cure  for 90% of all breast cancers ‘ – ok IBC is less than 5% of breast cancers – do they mean they will find a cure for that or not? 

There’s also the ladies that are picked to be the face of breast cancer appeals -always success stories, always so positive about their successful breast cancer journeys so that when people like ‘justenjoyhim’ and ‘whymommy’ try to say something different they are shot down as being cranky or ungrateful when in reality they are dealing with the very real emotions that dealing with a recurrence scare or actual recurrence can bring.

I guess being real isnt a good marketing ploy (yes -I’m being facetious)

I’m usually way more positive than this but its a fact that Breast Cancer (especially if its IBC) is not all cutesy or sexy or  ‘happy happy joy joy ‘ as some well meaning fundraisers would portray it. As I was saying to my uni friend AW most of the time I’m positive and try to ignore or play down the more dire possiblities that this disease can mean for me personally but sometimes things happen that make it slap me in the face.

I’m not saying that  Breast Cancer Awareness Month is necessarily a bad thing I’m just saying lets be a little more real with what it actually means

For me personally its turning up to the hospital every three weeks for the foreseeable future to have IV herceptin in the hopes that it will keep me in remission.  And although I was  back  in remission May 2010 I have already had one scare and scans to check recurrence or metastasis – they came back clear – but they want to scan me again in December ‘just to make sure’.  Its having an echocardiogram every few months (next one due the week of my university exams) to make sure that the herceptin that is my ‘cure’ isn’t giving me heart failure.

Its ‘just enjoy him’ worrying about whether elevated tumour markers mean a recurrence, its ‘whymommy’ being too sick and tired from her chemo treatment from her recurrence to play with her young children.

Its my friends from Sweet Louise who are all dealing with metastatic cancer.

And especially its my IBC sisters Angela, Roxanne, and Malu who all lost their lives to this disease in the last week

For all the success stories there are still people suffering and dying from this disease and each one is one too many.

If you see a pink ribbon, remember them – I know I will.

Real Breast Cancer Awareness Part I

I have been so busy getting my last university assignments out of the way that I haven’t had a chance to blog as much as I would like so far this month.  I’ve got a lot to say so have decided to break it up into smaller topics

Part I – What is real breast cancer action and awareness?  How can you help?

In America there has been a bit of a backlash amongst my breast cancer friends about “pinkwashing” and also the idea that just by putting a pink ribbon on it whether you be a person or product you are doing enough for breast cancer awareness and supporting people with breast cancer,   and then of course there are the things that are pinked that are just wrong or misguided bad taste.

It’s interesting that here in New Zealand the breast cancer charities seem to have heard that there is a bit of pink fatigue and actively dialled down their pinking this month.  But in doing so they are not necessarily doing me a service.  All the Breast Cancer Action Month’s events seem to have mainly been at the beginning of the month and not a lot is getting media attention.  It makes me sad that something like the WIMA ride didn’t get much publicity, although they raised a substantial amount of money for the NZBCF.  Like wise the Timtam promotion where instead of getting you to buy biscuits they are actively saying donate and we will match it – the money is going towards Breast Cancer Aotearoa Coalition

From the states we get good campaigns such as Puma’s Project Pink which is rewarding with $1 per tweet towards Breast Cancer charity that is voted on by the people taking part.  This is giving power to the people as to which breast cancer charity they will support and letting people do something to raise money that doesnt necessarily mean buying the product.

While both Puma and Timtams (Arnotts) are getting some advertising media mileage out of the campaigns they are not directly profitting from what people are doing to make a donation (although Puma assumedly will make a profit out of selling Project Pink branded gear) and to me this is the key to getting people to donate wisely.  Although it is an American site “Think before you pink”  has some thought provoking questions about how to intelligently back the cause

I’m not saying don’t buy your pink ribbons or donate on Pink Ribbon day but donate more directly or where a significant amount is going to the cause.

Its finding that balance between enough awareness and getting people to donate to what is still a good cause. or using the pink  ribbon arbitrarily to boost sales and giving a tiny or undisclosed sum to Breast Cancer charities

If you want to donate  in New Zealand consider making a direct donation to one of these charities Breast Cancer Aotearoa Coalition, Sweet Louise, or New Zealand Breast Cancer Foundation

RIP Angela

Angela Taituma one of two other NZ women I knew with IBC died today. She was 37 years old with a five year old son. She was  diagnosed only 3 weeks before me in 2008. It had spread to her chest wall and lungs at diagnosis and she was in remisson by the same time as me April 2009.  It had spread to her brain by July 2009.

The aggressiveness of  IBC has claimed yet another soul. This is why I push awareness of IBC and  why I personally cannot let my guard down against this monster who is taking too many good people. ♥ ♥ R.I.P. Angela ♥ ♥

My first “Mothers with Cancer” posts

These are my first two “MWC’ posts on the communal Mothers with Cancer blog – one is the same as my Pink October post here and  the other is about some thoughts on MD living so far away and my girls living their lives.  sometimes I will write seperate blog posts just for that blog sometimes I will crosspost an entry that is for both that audience and this one.

Pink October

I wrote this as a comment on another blog but thought I would reiterate my stand on “Pink October” here

“love your analogy of cookies – I guess my grade 3 Her2+++ IBC would be burnt mouldy crumbs. Like Joanne I am glad you mentioned IBC.
I dont like the over commercialisation of breast cancer awareness but I have noticed that the NZBCF is moving away from calling it awareness and have called this ‘Breast Cancer Action Month’ and are targetting raising money to support women with breast cancer and research for a cure and awareness. That is something I can get more behind.
As an IBC fighter/survivor: first diagnosed Aug 2008 remission April 2009, regional recurrence October 2009, and back to remission May 2010, I will wear my ‘ no they’re not real t-shirt – the real ones tried to kill me’ or other similar survivor shirts and go to events to raise awareness of IBC in particular. I will also wear my shirts to my uni course, and talk to people about my fight – A) to remind them that behind all the pinkness there are real people fighting the disease and B) to educate people that you can get breast cancer that doesn’t show up on mammograms and can develop without a lump as IBC is relatively unknown here in New Zealand. I sure didnt know it existed til I got it.”

To reiterate, when I got diagnosed there was no lump in my breast – just threads all through my breast and the nodes in my armpit and above my collarbone were involved .  The only warning I got was an itchy breast 2 weeks before my breast blew up with the course of a day (it looked fine in the morning) to be big red and funny looking very similar to the second picture on this page except even redder and more puffy looking.  I had a slight ache a couple of days before but had put it down to being ‘that time of the month’.  I was stage IIIc at diagnosis which is the closest you can be to metastatic without being Stage IV and I could not have got diagnosed any sooner than I did – unlike a slow growing lump IBC is fast growing and undetectable until you get the physical appearance of symptoms.

No lump , Doesn’t show up on mammograms, still  Breast Cancer!!