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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

Pulling the ‘big C’ card

I try not to use the “big C’ card  too often.  I even stand on the bus or train when some little munchkin is too impolite or ignorant to read the signs that say persons that are paying child fare should stand up and give their seats to adults…  but I have used it twice this week.

I got an extension for my assignment due on the 4th purely due to the fact on waiting on my CT results to find out whether Im officially in remission is doing my head in. I only asked for an extension to the end of the week (7th) as I just need a bit of time when my head is clearer.  Because its not whether the news is good or bad that really matters its the not knowing.

You have to fill out a form to make getting the extension official.  I had emailed the lecture about how I was struggling etc and he was completely supportive however I still needed to fill the form in.  There is a place where you have to fill in reason for extension and you have to have supporting evidence (med cert or other).  I had left these blank until I saw my lecturer to get him to sign it.  Half-jokingly I said  ‘Should I write I’m going slightly mad” he said just leave it blank,  and under supporting evidence he ticked other and then just wrote “talked to me” and initialed there.

I felt guilty about getting the extension but the relief is amazing now that Im not worried about two things around the 4th – I still have to work on the assignment now but the pressure of it being due on the 4th is gone.

The second time I used the Big C card was to frighten away a possible cyberstalker.  Somehow some weird person had got hold of my mobile phone number and the fact that I have the same initial and last name as a recording artist here in NZ that uses his initial and last name as his stage name.

the exchange went like this(translated from total text speak to understandable):

Them: Heya

Me: hi who’s this (thinking it might be some uni friend or someone who I dont have in my phone but that I’ve given my number to)

Them: Um I’m a friend of 1 of ur friends?

Me(thinking ok this is a bit wierd but its ok if its a valid friend thing) : Who’s ur friend then? how did you get my number?

Them: Joanne

I didnt answer (I dont think I know a Joanne at least not spelled that way)

Them: R u ..(initial) (surname) da artist?

Me: (having a good old chuckle to myself) No I’m a 47yr old mother/ uni student (thinking this would stop the correspondence)

Them: Aww Im sorry she lied to me – Im sorry I bothered u- my name is william im 33 and she gave me ur number – her name is joanne (surname).   R u married?

 I didnt answer

them: R u at auckland uni?

few minutes later

them: so would u like to be friends?

me wondering how to stop them texting me without being too mean – still not replying

them: hello are u there?

me: yes Im married – doing social work at U of A. not sure where your friend Joanne got my number from I dont know her.  not really interested in being friends – busy with the friends Ive already got, my family, uni and having cancer(thought this might scare him off also debated with my friend A who I was on the phone to at the time I got all these texts whether to tell him I only had one boob- although we were also joking that as he was saying he was 33 I could have a toyboy -um no I dont think so) Im sure ur a nice person but sorry

 them: aww thats ok I wil delete ur numbr thanks for texting me anyway u take good care of urself and god bless u and ur family

I hope that is the end of it but I really think it was me saying I had cancer that made him leave me alone.  OH thought the exchange was hilarious when I told him when he got home although both OD and MD when I told them were very much “be careful, he’s a stalker mum.”

So two very different reasons for pulling the cancer card but Im glad I did both times

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4th of May = Anxiety

I’m trying to get into my next assignment.  Its due on the 4th of May – but every time I try to get into it the fact it is due on the 4th of May keeps interfering.  Why? – because the 4th of May is also the day that I find out whether I am officially in remission again. 

I have got through the full-time uni schedule from the beginning of March by telling myself over and over again “Its only til the end of April! Its only til the end of April!”  Its the only way I have been able to psych myself up to go to Uni every day when I have been feeling so bone tired most of the time.

Now is the moment of reckoning – although I am fairly positive the chemo has worked – now that it has come down to it , I didn’t realise how anxious I was about that being the case.  I think it has been a fairly emotional last couple of weeks – times like Easter and Christmas make you reflect  about whether you will be around for many more occasions to come.  Then I did the assignment about my own personal cultural identity which made me dig deep and let myself be vulnerable to my class mates.  So I am feeling even more emotionally charged than usual.

So how do I get over this hump about not being able to think about my assignment without being sidetracked about the date?  OD, a much more veteran University student than I suggests that I shift the date in my head that the assignment is due.  That I tell myself I have to have it finished by the 3rd or even the last day of April to get over the significance that I have attached to the 4th.

What ever I do – I have to find some way of turning off my anxiety about the 4th long enough for me to concentrate on the assignment.  Wish me luck for both the assignment and the remission result

The Breast Cancer Culture

I had to do an assignment for Uni on Friday that was a 10 minute presentation to the class and and essay analysing my personal cultural identity.  One of the things I talked about was how my entering the ‘breast cancer culture’ made me question my beliefs about myself as a women and question my beliefs around my own mortality. 

Even the lecturer commented on the part about  me questioning my identity as a woman.  I think it was something that as a man he had never thought about.  I think all the other things I talked about he, as a practising and academic social worker,  had thought of or was knowledgable about.  I just may have taught him something.

I put photos on a powerpoint presentation slide of me as I looked in 2006 with long curly hair and big boobs then a picture of the beginning of last year when I had just finished chemo and had no hair to a picture of how I look today.  I also put on a picture I had taken for this blog of me recieving my first chemo and a picture of ‘Pruscilla’ my prosthesis

you can view it here breast cancer slide v2 – (let me know if you can’t see it when you click on it and I will convert it to an image)

This is what I said to the slide: In 2008 I became part of the ‘cancer culture’  the first picture is what I looked like in 2006. In most cultures women identify them selves by such things as having long curly hair and large breasts and that’s how I thought I identified myself as a woman, so to have those things taken away from you is hard to get your head around and you also question your own mortality.  As part of our culture it is expected that women will look a certain way and although I walk around my house with only one boob – I put a prosthetic breast in to fit in with society’s expectations. 

I was nervous about putting this in my presentation.  I only had to present it to 1/3  of the class but they are mostly younger women and men and I was a little worried about how uncomfortable I would make them –   but overriding that was a desire to be true to what had made me who I am today.

Culture isnt just the ethnicity etc that you were born into.  Its also the cultures and experiences you meet along the way.

Other peoples words

I read two different blogs this week that dealt with the feelings of cancer patients – one was a poem about what its like at diagnosis

This is an excerpt from Slouchy’s poem which you can find here on her blog Slouching past 40

“On x-ray
The shadow is
Unexpected —
Starker by far
Than shadows
Should be, and
Then, there,
The fear is sown,
As insidious
As the cluster
Of confused cells
That inspired it.”

Please go to her post to see the rest of it – its beautiful

The other blog I read was by someone in remission – in the States they call it NED and she was writing about how “NED’ lives with them and impacts on their lives.  You can find Clerygirl’s post  here at Mothers with Cancer

 Both of these pieces are great ways of showing both the good and the bad, the highs and the lows of being a cancer patient. 

I found out today that an aquaintence – another women with a special needs child – has been diagnosed with metastases to her bones only a few short months after original diagnosis of breast cancer and it made me reflect on these two bits of writing . 

I hope to be living with NED shortly but with the news about A today I am torn between feeling grateful and relieved mine was only a regional recurrence and the fact that my concerns about further recurrences are justifiable and real.

As I said to a mutual friend quite frankly “CANCER SUCKS @#$&%$!#$!

Break? What break!?!

The last two weeks have been a break from Uni – but I still feel like I need more of a break.  Easter was good with MD and SB up from Christchurch for the long weekend and YD home for a couple of days from her house.  But …I must admit it did make me face my fears a little.  It really got to me that this is the second Easter that I have been in treatment.  The important family times  – two Christmases and two Easters have come and gone since Gertrude first came into my life and I have been in active treatment both times – and it made me wonder what next Christmas and Easter will bring.  I want so badly to believe that I will go into remission and stay in remission this time but there are no guarantees that I won’t be back in treatment this time next year.  That is the cloud that hangs over not only me but the rest of the family.  One of the things MD said before last Christmas was that she had hoped for a ‘normal’ Christmas last year.

After YD went home on Easter Sunday I crashed energywise in a big way.  I think I have been getting through Uni on pure adrenalin and pushing myself.  When I gotthe chance to relax all I wanted to do was sleep.  SB went back to Christchurch on the Tuesday and MD stayed longer as it was YDs 21st birthday that Thursday.  The second half of the week was doing preparations for that.  OD, MD and I took YD out for a birthday lunch on the Tursday and then spent the afternoon looking for a party outfit for her.   OD took a photo of me that afternoon and I look so tired ( I dont photograph well at the best of times but this photo made me look really tired.)

me looking as I was feeling

This is me looking exactly how I was feeling that first week.  (Its only a little photo because I copied it off her facebook page – she had tagged me but I untagged it because I didnt want everyone seeing it but on here I’m more anonymous).

On the Friday MD, OD and I went up to Auckland so that we could look for a wedding dress for MD – we didnt manage to find it that day but MD did try on 3-4 dresses just to get a feel for the style she wanted.  The afternoon was curtailed by the fact I had to be at Greenlane hospital at 3 for an echocardiogram of my heart. 

Saturday was taken up with party preparation and Saturday night went wonderfully for YD’s 21st birthday party.  JMJ and SMJ provided a clown show and YD handled the party extremely well. 

On Sunday there were two wedding expos on in Auckland so MD, OD and I went off to those.  MD managed to find a bridal shop that had the design of gown that she wanted and they could make changes to the decorative band under the bodice to make it more what she had in her minds eye.  SB’s and MDs original plans were to get married next February but with money being a bit tight and uncertainty of SBs possible being on excercises or deployment with the army they have decided to put it off a bit longer.  We are still looking for things now though because if we organise things that can be organised ahead of time then when they do set a date we can go full steam ahead with some things already done and dusted. 

The second wedding show we went to on Sunday was at Sky City.  I had never been to the casino there so in the spirit of doing things that I have always wanted to do, we spent an hour in the casino – trying out the pokies, roulette and a quick chance wheel.  We walked out with OD having doubled her money ($5) MD having lost $5 and myself down $10 but I thought it wasnt a bad price for an hours entertainment. I would like to go back there and try my hand at the cheapest blackjack table because thats the one card game I am good at.

MD went back home to Christchurch on that Sunday night.

On Tuesday I had my oncologist assessment but we didnt discuss a lot because until he gets the results of my echocardiogram and the scheduled CT scan (happening this Tuesday afternoon) we can’t make any concrete plans as to where to from here.  The plan is for next Thursday to be my last vinorelbine chemo and then I will see him on the 4th when he has those results and if they are as good as we expect I will just have herceptin  on the 6th by itself and every three weeks thereafter.  I also intend to ask him on the 4th about my planned trip to Samoa in July – whether or not I can book now or whether I should leave it a bit closer to the time.  The other thing I want to ask him that isn’t cancer related as such is how long I should wait before getting a tattoo.  I have always wanted one but have put off getting one because of my fluctuating weight etc but the design I want has remained constant for the  past 30 years.  Its another thing I have decided to go ahead and do because I’ve always wanted to.

On Tuesday night I talked to the mother of a young woman called Angela who is one of the few other woman I know of in New Zealand fighting IBC.  I encourage you to go and look at her website as she is a 36 year old women with a 4 year old son who was diagnosed only about 6 weeks after I was (September 08 ) but has already developed several brain metastases (they were diagnosed July 09)  Pharmac won’t pay for the only drug that is likely to prolong her life so she is paying over $2500 every two weeks and relying on fundraising and the generosity of others to give her as much time with her son as possible.

Her story puts my worries into perspective.  As I said to a friend at a gathering I went to on Saturday night – “I’m still here  and I’ve still got  a chance”

Uni starts again tomorrow and I think my energy levels will pick up once I get back into the groove so to speak.  I haven’t done as much work on my assignments as I should have but I only have one due this week and thats on Friday and I’ve done most of that one.  I only need to get through this semester and as long as I’m only on Herceptin the tiredness and other chemo side effects should gradually wear off over this time.