Wednesday, 27 February 2013

Five lines and a little bit more

At the risk of being delusional and believing that people are actually waiting for me to update them on where and what has been happening with me and to me, Ducatilad has been gently nudging (actually more like guilting) me to “just write 5 lines so that I can stop having to answer questions from people about what has been happening” In fact today it was down to “please just write one line” with the final guilt ridden line of “ I don’t ask you to do much”. Ouch!

Well as if one line was ever going to happen.

Where have the past 5 months gone?
Lost in the blur of chemo, trying to survive it all, trying to balance everything, trying to be kind to myself, trying to protect those I love from it and trying to pretend that it wasn't all happening.
But chemo has a habit of reminding you that you are in fact in the middle of what at times feels like a crude street fight, and just as you stagger to stand up it responds by slapping you hard in the face. (And I always swore I would never use a battle/fight analogy but that just seemed to appear on the page.)

I had my last chemo treatment on Friday 18th January.

That completed the 6 rounds that I was scheduled to have. They were delivered at 3 weekly intervals, perfectly timed for you to just start to feel almost human again before they deliver another dose of poison to your body.

The final round was one of the easiest physically – amazing how your idea of easy changes after 5 rounds of chemo. So apart from the diarrhoea, numbness in my fingers and toes and around my lips, the reflux, the esophageal thrush, the sore mouth, the taste buds that went AWOL with my appetite, and the insomnia I actually managed OK physically.

Emotionally, well that is a whole different story. I was honestly surprised at the overwhelming feelings that gatecrashed my world.

Given that I was working in the area of survivorship one would think I would have been all over this survivorship stuff - how surprising that I am actually not that different to anyone else. OK maybe it was just me that had the unrealistic expectation that I would do this whole thing well.

At the time I didn’t want to hear cheering and congratulatory wishes. I felt as though I should have been celebrating but I just couldn’t quite muster the enthusiasm for it. I didn't feel like I had made it through yet. Yes I knew at some level that all would be OK, that the chemo was my insurance policy (with a bloody huge excess to pay) and that it would only get better from here.

I was exhausted physically and emotionally, there were so many thoughts and feelings whirring around my head.

Everyone kept telling me that I would feel better. I knew that physically I would recover but I wasn’t so confident that emotionally it would feel better. There were many times that I actually  silently told people to f*ck off cos you have no idea what it feels like from this side. (Glad my filters worked and this remained a silent conversation)

So it is now nearly 6 weeks since my last round.

Here I am, feeling well physically and in a whole different place emotionally. I feel like I have found myself again. Not a new self, or even a vastly improved self, but perhaps a little kinder self. 

And yes I am grateful – no not for getting breast cancer. As I have already written previously I don’t buy into the whole “cancer gave me a gift” story (having a bilateral mastectomy and chemotherapy sure wasn’t on my list of things I must experience before I die) but for all the people I have in my life who love me and care about me and for the amazing medical team who treated me and for being able to access affordable first world medicine that will give me the chance to pay it all forward and most of all for airline competition that made it affordable to travel back and forth to Ducatlilad land to be looked after.

Oh there feels like there is so much more to fill in – each chemo treatment in all it’s glorious detail, the bizarre, the shitty, the laugh out loud moments and those special moments that will  be forever etched on my heart.

But this will have to suffice; for Ducatilad, for all those who have been wondering if I made it through and for all those who cared enough to ask.

 A few more than 5 lines and sadly it seems that guilt may still be a motivating factor in my life.

Still as always

P xxx

Sunday, 18 November 2012

Lost in chemo world (and my own head)

Well I have been absent for quite a while – lost in chemo world.  But also lost in my own complex struggle with the world of blogging.

You see writing isn’t cathartic for me. I have never been a diary writer, except for the one attempt in my early twenties while overseas where most of the entries involve some description of alcohol and weed (yes my children know).

I am also not a journal writer. When I was diagnosed the first time my beautiful M gave me 2 blank journals with the direction to write it all down. There is one entry in that journal – a profound one that still rings true today – but the rest is still pristine and empty.

So why on earth did I start a blog to write down my experiences this time?

Well it seemed like a great way to communicate with people, keep them up to date without having to repeat the same story multiple times, a leap into the world of social media and the highly egotistical belief that I am hugely funny and have a way with words that the rest of the world just had to be exposed to.

So I started.  And there was a part of me that initially found it hugely satisfying but not in any cathartic way.
Rather than help me work through the issues that I was confronting dealing with a  second diagnosis of breast cancer, it became a vehicle with wish to play to an audience and entertain people about a fairly deep and distressing experience.

And yes I proved that I am in fact funny, have a way with words and say things that most nearly 50 year old woman wouldn’t say.

I was overwhelmed by the response to the blog.

But that was the catch. I then felt obligated to write, perform to an audience and keep delivering.

But once the initial “blogger’s high” wore off it became like a school assignment hanging over my head, with this self imposed pressure to keep writing posts. (Welcome to the world of the writer I can hear some of you saying)

It is true that after my first round of chemo I was in no shape to write anything but as I started to feel better there was this constant chatter in my head about the need to write something, people were expecting it, even waiting for it 
(OK so I am slightly co-dependent ), that I was lazy and self sabotaging an opportunity to create something that could be used to launch my post cancer writing career.

So much for learning to be kind to myself.

The other contributing factor is that I get bored quite easily and once I have achieved something then I am looking for the next thing to get me excited.
It happened with the marathon that I ran two years after my first diagnosis. I committed to achieving that, put in the training and completed it (in just under 4:30). I then thought about doing another but just couldn’t get excited about it.

Bit like been there done that…next.

So that’s the conflict – writing privately doesn’t give me a buzz, (and for those of you who know me, know I do love an audience) writing publicly does but then creates this pressure.

I also can’t bring myself to just write a summary of  what has happened to me – that would bore me and probably you as well.

So where does that leave me?

Not sure but it does provide great material for me to work on with my psychologist.

And I bet you thought that I talked about my cancer diagnosis, double mastectomy, chemo and all the stuff that comes with that. Ah that’s easy to deal with cos I have no responsibility for any of that. (and who am I trying to kid?)

So if you have made it this far through my self indulgent justification as to why I haven't written for ages let me just reassure you that I am in fact doing OK, there is no "nasty news" reason for me not writing and chemo is not all that it's cracked up to be.

Just like I am working hard on incorporating mindfulness, meditation and self-kindness into each day I may try to also set aside time each day to write and accept that whilst it may not be cathartic there is some intrinsic value in it.

Besides while being lost in the world of chemo and in my own head I have actually composed many  amusing blogs, which I know the world is just waiting to read. (Not)

No promises though.

I am still as always

P xx

Thursday, 27 September 2012

Welcome to the Chemo Lounge

You can leave your hat on as you step inside.

Round One: Chemo vs P

And at this stage it would appear that I am winning.
Well my very bad cough and virus seems to have cleared up after the chemo. Not sure it is a recommended treatment for such common day ailments but I am actually feeling OK.

I am sure the very special drug regime that A/Prof E lined up for me certainly helps.

However it was a bit touch and go this morning as to whether I would even get to start.
I had called ahead on Tuesday and spoken to the breast care nurse to let her know that I was really unwell and that I did in fact have a temperature.

So they were waiting for me and I was ushered into a private room - make sure I kept my germs to myself.

Whilst I was certainly feeling a whole lot better than I had been the previous two days my attempt at the old makeup and lippy trick didn't seem to impress the oncology registrar. She wasn't convinced that I was well enough and the troublesome little nodes in my neck were of concern.

Any way they decided to do my bloods ( that's the lingo for getting a blood test - get with it) and see what my white cell count  was.

Now as I have written in previous posts I have a mild case of anticipation anxiety and I was a little anxious about getting the cannula in.

In preparation I had stuck 2 emla patches on the back of my hand hoping to cover the right vein. I felt a bit like that guy in the Libra Sanitary Pad advert who had stuck them all over his body. Wasn't quite that bad.

Well with the very steady hand of S the little cannula went in with hardly a blip. My anxiety levels dropped immediately

So bloods were taken and that meant we were free to go for a coffee and wait for the results. (again that waiting game)

Team Chemo today were the Fabulous M and my gorgeous daughter S. So we slipped out and enjoyed a great coffee.

And the good news on our return as was that my makeup and lippy had done their job and I was OK to start round one of IV Cocktails in the Chemo Lounge.

My Cocktail list is of the FEC  group. The official names are Fluorouracil, Epirubicin and Cyclophosphamide ( not sure they are acceptable scrabble words)

The first lot is given via a large syringe which is slowly pushed through the cannula. It was a little uncomfortable but very bearable. This first cocktail is bright red - kinda of like a vodka and cranberry.
There are 2 of those that get given.
Then the next two are through IV bags. First one takes about 15mins and the second around 45 minutes.

And then when that is all gone through - a little saline flush and it was all done.

I actually can't begin to described how surreal this all feels. My body has been pumped full of essentially toxic chemicals and yet I am sitting here not really feeling anything different ( OK I know, don't tempt that chemo god)

And there is no doubt the waiting the anticipation and the the fear of the unknown have been so hard to deal with.

Last night was one of the toughest I have had in this whole time. I was feeling like shit, couldn't imagine that I would ever feel OK, and did dare to utter the words "this whole thing is so unfair and I don't deserve to have to be going through it"
Not one for self pity felt justified.
S was an angel and I actually let her reverse our roles - she "spooned" me in bed, stroked my head and just let me cry and be vulnerable. She stayed there till I drifted off to sleep.

This is all been made a little harder because Ducatilad can't be here with my physically. He is navigating his own stuff and needs to be the son he needs to be. We both get it, we just don't have to like it.

So here I am 8 hours post my first round and I still  feel I am on top of this. Just a relief to get started.
I am aware that there is till a long way to go and lots to get through.

But I think given everything this is as good as start as I could have hope for.

I am going to slip myself one of the little white pills that helps with both nausea and anxiety cos I figure a good nights sleep is a blessed thing.

Here's hoping it gets me through.

As always

P xx

Friday, 21 September 2012

And the results are in

Well I got what I was hoping for - a definitive result from the test.

It's just that I was kind of hoping that it would be a definitive no, not a definitive yes.

In very simple terms the results show that as it stands I have a 23% chance of getting a cancer somewhere else in my body but  by giving me chemo this will reduce my risk by a further 30%. You can do the math but it is worth it.

 And the money was much better spent on this test than a chin augmentation and a new handbag.

So chemotherapy is my next gig. I start on Thursday and I will have 6 cycles, over 18 weeks.

I really regret not writing this straight after I got the results because my "hey I've just been thrown another big challenge" creative stimulus  had me firing with inspiration and so many funny one liners.

But I was very busy after the appt with my oncologist. There is so much stuff to get done, things to read places to go people to see. I can understand why people feel like they need a project manager to organise it. Maybe I can just outsource the whole experience.

I was going to write last night but with Ducatilad only in town for 36 hours I had better things to do late at night and we had consumed a very nice  French Bordeaux at dinner (make no apologies for TMI).

So tonight I am just tired, emotionally wrung out and pissed off.

Add to that I have a shocking cough, sore throat and I  feel like my body is doing a dress rehearsal for chemo.

 Again I am gunning for my good friend denial hoping that she will get me through the next few days as I focus on getting well physically so that my body can cope with the assault it is about to undergo.

But at least I now know that the cocktail of poison that will be delivered to my body will actually be of benefit.

Comfort? Not sure.

I did however take a proactive step in preparation - I went and had a very very short haircut.  
Now for those of you who know what I look like, you know that I wear my hair very short and chic. I have been letting it grow until I knew whether I was having chemo or not.Think the hormone therapy has made it thicker and coarser.  So off I went today to get the lovely Tara to crop it even shorter than I normally have it.  One up from a number one buzz. 

Just like I knew that I wanted to have a double mastectomy as soon as I was diagnosed this time, I knew that I didn't want to wait to have my hair fall out in random bits once chemo started. 

And no I am not taking preemptive measures anywhere else on my body.

Sleep won last night. I had intended signing off with a very pithy closing statement but I interrupted my blogging to watch Puberty Blues. Didn't make it to the end - awoke slumped like a Nana with my headphones in and the adverts on a loop.

I  am resting today in my fight against this cough and cold. I think my immune system is crying "enough" so I am trying to listen.

No doubt chemo will provide me with many funny moments and great blogging material. It's just at the moment I am struggling to see the funny side.

But I am as always

P xx

Thursday, 13 September 2012

And waiting......

Cancer involves a lot of waiting.

I was all set to see my oncologist today to learn whether chemo was going to be of benefit to me in reducing my risk of another recurrence.
Yesterday I got a call from her receptionist to tell me that the results of the test were not back and therefore it was no point in coming in.

I didn't realise how much I had been focusing on that appointment, treading water till I could get some plan of action in place.

Appointment has been re-scheduled for next week. 

And so here I am waiting again.

In the meantime N's graduation was very special - if not very very very long. 6 hours in fact.
I am proud to share that he was awarded a prize for commitment. To what you may ask? Well to any cause that he felt worthy of pursuing. (often his own cause) It is a recognition of his determination and perseverance in things that mattered to him. A great way to end his school years.

I can also report that I found the leak in the mattress, repaired it and only had to re-inflate twice during the night.

I will again attempt to sleep on it tonight - perhaps I am also worthy of a perseverance award. 

In honour of R U OK? Day I can report that I am, even though I was bummed out yesterday when the appointment got cancelled.

So I will keep treading water, stay busy and wait.

As always

P xx

Tuesday, 11 September 2012

Voices in my head

It is 4:50 am and I can't sleep. Several reasons for that. I am sleeping on the couch, not all that comfortable, my brain is very loud with chatter about all sorts of stuff and I am back to having hot flushes courtesy of the hormone therapy.

Why am I on the couch?

My mum arrived from interstate last night and she is sleeping in my bed. I did start out on the very swish inflatable mattress that she bought me, however I woke soon after with a sinking feeling and my hip pressed into the cold floor - it seems it has a leak and deflated itself. So I moved to the couch.

Why is my brain chattering?

Waiting for the results of the test to determine whether I have chemo is proving to be quite hard. I think I am most anxious about the possibility that the results wont be definitive one way or the other and then we will be back to weighing up benefits vs (whatever the opposite of that is) and  having to decide.

For me there will be emotional fall-out whether I do I don't have to have chemo. But I won't delve into my weird psyche around that until I have an answer one way or the other. 
(ah the anticipation of another post to keep you all coming back)

The other voice talking loudly in my head is "what am I supposed to do with this cancer experience"

I got an email the other day from my old manager who is also now a good friend and she wrote

“A little more than 6 weeks on and sometimes people forget that your life has been changed forever and nothing is as it was. “

6 weeks on and my physical wounds are healing really well and to the outside world, and to many of those in my inside world, I don’t look any different.

Am I different? I struggle with that.

I was in fact driving along yesterday trying to work out why I can't get my head around this cancer thing and no surprises, but what I realised was that I can't because I don’t want to. I wish it would all just go away and I could go back to where I was before. And I was quite happy there.

I don’t think I needed something to give me a kick up the arse to make me stop and see what I had, appreciate what was important and value the people I love. I was actually doing a pretty good job at all of that.

Seems cancer doesn’t follow one of those predictable Hollywood scripts – the one where the bastard who has spent all her* life accumulating material things, shitting on her co-workers, taking her friends and family for granted and then BAM she gets diagnosed with cancer and after she has recovered from her gruelling treatment (where of course she still looks glamorous through it all)
she suddenly sees, with great clarity, the folly of her ways and makes peace with everyone and lives happily ever after in a state of zenful bliss.

Reality is, most of us who get cancer are just plodding along, doing the best we can, being the good enough parent, partner, friend, co-worker.

OK I can’t speak for the entire cancer population but I can speak for myself.

When I was diagnosed the first time, my life had found a new balance. S had just started school, N was at pre-school, I was working 3 days a week, going to the gym, training for a half marathon, fit and healthy.

Fast forward 15 years and here I was getting ready to enter into the next life stage with S about to turn 21, studying interstate, N about to finish high school, a challenging job in a great team and sharing it all with an amazing partner.

 This all presupposes that cancer is somehow sent to us to teach us a lesson. And I am  sure that that is not the case.

But I’m not all that sure where I am heading with this ( it is after all 5:45 am and I have been up most of the night) but I do feel that there is this kind of weight of expectation that I should use this cancer thing to
make some changes, bring forward some decisions and re-think what it is I want for myself.

Or maybe that is just the pressure I place on myself. (OK for those of you who know me well you are probably all nodding your heads and going D'OH)

Perhaps I need to take my own advice when I wrote in the Now What...? books and that is that it is OK to come out of this whole thing still being the same, faults and all. (I wonder if you need to reference something when you are quoting your own work?)

So where does that leave me and you, my loyal readers?

Not sure. But I do know that I will have to find the leak in the mattress so it will stay inflated all night and I can get some sleep. And some meditation ( and perhaps some medication) to help me quieten my chattering mind.

In the meantime I am going to focus on today - a very special day. N is graduating from high school. Not sure who is more excited - him or me. I am very proud of him - school hasn't always been the easiest place for him to be and he has had some tough stuff to deal with. But he has had a great final year and has surprised many (not his mum) with how he as finished up. 

So here we are - the sun is up, I am wide awake and finally the loudest voice in my head can shut up - I have written another blog post!

I am as always

P xx
* in the interest of equality the bastard is  a she in this movie

Thursday, 30 August 2012

A weeks worth of news

I am writing this from one of my favourite café’s in Ducatilad land where I am enjoying a few days of pampering and restoring with Ducatilad

There has been a lot going on in  the last week.

As I wrote in my last instalment I was very much looking forward to celebrating S’s 21st birthday. It was a welcome distraction and a reminder that milestones are important to mark and the joy of sharing it with people you love.

The weekend of celebration for S’s 21st allowed me to be just P, and not P with cancer. I can honestly say as I was standing at the bar, dressed in my Belle (as in Belle from Beauty and the Beast), costume that really needed a cleavage to hold it up, sharing pancakes, cowboys and the odd vodka shot I forgot that I had no boobs and that a little over 4 weeks before I was lying in hospital. This is the amazing capacity of the human brain to compartmentalise things and the power of alcohol to help you forget. Please no tutt tutting about that statement and let me clarify it was the cancer I forgot not the party.

There was a bit of a feeling of deja vu with S’s birthday and my cancer. At S’s sixth birthday I had only very recently finished my 6 weeks of radiotherapy for my first breast cancer. At the start of the radiotherapy I was marked up with gentian violet (like purple texta) so that they could blast me in just the right spot. (Seems they didn’t do a very good job as the f**cking thing came back). 

For some reason S hated these marks. At that stage the only thing I could promise her was that they would be gone by her 6th birthday. They were, we had a great birthday party and I looked resplendent in my Snow White costume.

Fast-forward 15 years and there I was 4 weeks post surgery for a second breast cancer, looking equally resplendent in my Belle costume.  

Just wish I could have promised her this time that we were over the treatment.

At the risk of veering into the TMI (too much information) lane, but delivering on my promise to be honest about my experiences, I wish to let it be known that having no boobs has had absolutely no impact on Ducatilad’s normal responses to me after not seeing me for a while.  And the same can be said for me. I feel attractive, loved and desired. (Ok I did leave my camisole on the first time)
The biggest step was being seen in the shower and you know what? That was OK too.  And this morning I simply wandered around as I always do – naked. (Apologies if that is an image that most of you don’t need).  

He promised me it wouldn’t make any difference and he was, as always, true to his word.

OK so now that I have made you all read about 21st Birthdays and my sex life I guess what you want to know is where are we up to with the oncologist and further treatment?

First up I should say that I was really impressed with A/Prof E. She was honest, patient and most of all was interested in me as a whole person, not just my cancer. Given my work, it is so encouraging to have a medical practitioner ask me about what psychosocial support I had, how my children were doing and what financial stress this may or may not cause me.

However the shock of the news that the she delivered to me last Thursday regarding the real possibility of having to have chemo did do my head in a bit.  (OK that is actually a really really huge understatement)

And of course there was lots of information given.

But fortunately trusted Na came with me to that visit and produced a comprehensive summary of the appointment which was enormously helpful in getting my head around it.

The main points were that given my pathology results, the fact that they think this cancer is a recurrence and that there is a risk of me getting another cancer the default position of the oncologist was to recommend giving me chemo.

Now chemo doesn’t work for everyone in reducing the risk of cells going feral and causing another cancer. The issue is that it is not easy to work out who will actually benefit so they tend to blanket bomb everyone to make sure those that do benefit will.

There is a test that is now being used widely in the States that can give oncologists a better indication of whether chemo will in fact benefit women like me in reducing their risk of getting a recurrence. Essentially it is a risk predictor tool that looks at the genes of the tumour to predict how likely they are to end up somewhere else (this is a very lay persons explanation)

My oncologist (so now there is my hairdresser, my beautician, my  therapist…) has been using this test and she trusts the robustness of it.
So while her default position was to recommend chemo – if we didn’t have access to the test, the test would give her more information and know that it in fact would be of benefit.

The  test isn’t covered here and it is costs more than a louis vuitton bag , a chin augmentation or a double mastectomy.

Cost isn’t the issue but the concern was that we would do the test, pay the money and then still be having chemo.

But if I am going to submit myself to 6 rounds of the equivalent of crop dusting, loose my hair, my eyebrows, eyelashes and feel like shit for 18 weeks then I guess we want to know that it is at least going to benefit me.

The upshot is that I have agreed to the test.  I don’t have to do anything. They take a small sample of the tumour and send it away to do the testing. That was done last Monday.

So now it is just a matter of waiting for the results. Not an easy space to be in as I can’t really plan for much as I don’t know what I will be dealing with. Again I am trying not to engage with it until I have to.

 However I have started on the hormone therapy, which we know, will be of benefit as my tumour was very hormone receptor positive. This means it needs female hormones to grow and reproduce. Hormone therapy works by stopping oestrogen from 'feeding' the breast cancer cells.

This involves taking a little white tablet once a day for 5 years. Not a big deal and I am hoping that I avoid any of the reported side effects like growing a small penis, facial hair and an attraction to women.*

It does all seem a bit surreal – every so often I have this urge to shake me head and go Whoa I have had cancer a second time. That is just so bizarre. Especially as I am now feeling and looking (if may say so myself) pretty good.  

In the meantime I could get very used to this life of writing in café’s and being pampered.

I intend to enjoy this time as it may all come to a bald, nauseas halt in about 3 weeks.

Well I think I have brought you up to date. Yes there has been a lot more emotional processing, which I will write about when I run out of actual news.

I can now stop beating up on myself for taking so long to write this. I know, cancer is supposed to make me stop placing all these expectations on myself, go with with flow, do what feels right, be zen and sit in the lotus position for hours on end. I am trying, honestly I am.

I remember last time waiting for the bolt to come down and hit me with all the answers to the meaning of life and a transformation to take place. It never really happened. 

This time though I think I might just wait a little longer, listen a little more closely and do things a little differently.

Because there are only two times in life - now and too late**

As always

P xx

* no surprises that these are not actually documented side effects
** this is not original but one of my favourite lines from Anh Do's book "The Happiest Refugee." Highly recommended reading.