Monthly Archives: March 2016

The frustration of the unpredicatable

One of the many breast care nurses that have so kindly contacted me in the past few weeks told me that I shouldn’t get hung up on my treatment dates because they will inevitably change.  My initial thought was, ‘whatever’, I’ll just focus on getting started.  Well, I should have listened because not even one round of chemo in and the breast care nurse can claim a victory.  She was entirely correct.

I turned up for my first session of chemotherapy so ready to begin.  Except that my veins didn’t quite want to come to the party.  Four different nurses tried to find a vein to canulate me so that they’d be able to pump the chemo through.  Four different nurses failed.  After the fourth attempt, I was somewhat distressed, ok, I cried.  My mother, who had taken me to the appointment, ran off to fetch my oncologist.  I think my crying made everyone uncomfortable – including the other patients having chemo.  Did you know, they just administer chemo in one big room?  So, for the first time, I really got to see what it looks like to be deep in the middle of chemo.  Sallow faced, weakened and skinny, bald people everywhere.  And, everyone in the room was on average 20 or 30 years older than me.  Confronting, at best.

But anyway, back to the story.  After a quick discussion with my oncologist, we decided that if every attempt to canulate me was going to result in multiple uncomfortable attempts, it would be better (and I suspect much more efficient for the nurses) for me to get a port put in.  The port will sit just under my skin near my collarbone.  The nurses will be able to access it much easier than trying to find a vein in my arm, so that’s good news.  The bad news is that a port means another general anaesthetic and hospital visit this coming Wednesday.  Chemo will then start on Friday.  So while the week was incredibly frustrating, the silver linings are that I have enjoyed another week of feeling well and I’ll still have my hair for my cousins wedding which is coming up in early April …

I think I’ve written before that both chemo and radiotherapy are like getting extra insurance.  Whilst technically all my cancer has been removed, thank you Corinne, there could be a rogue cell hidden somewhere just waiting to grow.  My radiation oncologist tells me that often breast cancer can recur locally or it can return as lung cancer, bone cancer or liver cancer.  Not pleasant.  So, the aim of the chemo is to kill the rogue cells that may be lurking.  And the aim of the radiotherapy is to kill anything that may be left in my chest well with an aim of stopping a local recurrence.

I guess ultimately, the surgeries, the chemo, the radiotherapy, the healthier eating etc. is all to try and ensure I enjoy a long and healthy life.  Yesterday I went for a walk along the spectacular WA coast line.  One of my favourite walks in Perth is along West Coast drive between Trigg and Waterman.  Just hilly enough to feel it and with a spectacular vista.  As I was walking past Mettams Pool, I spotted a woman heading in to the ocean for a dip who must have been easily pushing 90.  How wonderful, was all I could think.  What a blessing to be healthy enough at that age to still enjoy a swim in the ocean.  That, my friends, must be the aim.  Did you know the life expectancy of a 32 year old woman in Australia is 90?  I’d like to get there, and go swimming in the ocean like the lady I saw at Mettams Pool… plus do all the other things in between that I haven’t yet had time for.

IMG_1091

Swim time at Mettams Pool.

Oh, and finally to end on a positive note, they say that before you start chemo you should do something really fun.  Well, lucky me, my fabulous friend Amy invited me to attend the first diner en blenc in Perth.  What an amazing evening.  A pop up ‘picnic’ with 1500 people all dressed in white at Elizabeth Quay.  It was a breathtaking sight and a marvellous event – we had a great time!

Wishing everyone celebrating Easter this weekend a very happy and blessed Easter.  Enjoy time hanging out with your family and friends.  And raise a toast to your health.

Krissy xx

 

The sweet spot

IMG_0865

Turning 32!

My little sister, Thalia, calls my current state of being ‘the sweet spot’.  It’s the sweet spot because it’s my last few days before I start the next phase of treatment, the hard recovery after my surgeries is over, I’m feeling well and getting out lots.  I’ve got plenty of time to get to the physio, go to pilates, shop, eat wellI, celebrate my 32nd birthday etc.  There are still lots of appointments and I certainly haven’t had a shortage of things to keep my busy, but there really hasn’t been much to do in terms of treatment.

 

Around the corner

I am acutely aware that when I start chemo next Wednesday, things will change.  Who knows precisely how my body will react.  There are no certainties.  But, my oncologist and the breast care nurses tell me that it is a certainty that I’ll be really tired.  Luckily, I’ve got books and netflix to keep me company.  And, for my birthday which was on Tuesday, I got a new quilt cover so my bed will be pretty and ready for rest.  I also cleaned out my room.  You know those annoying things that just linger for months (or years) on end for no reason?  Well, I cleaned them out so that my room is tidier and a bit more zen.  As always, I’m getting prepared.  The juices and (relatively) healthy eating continue, too.

Reminders

This week, I also had the displeasure of learning that one of my beloved colleagues has also been diagnosed with breast cancer.  I work at a large national law firm, but my team, the Perth construction team, is relatively small, so for two of us to be diagnosed at the same time is simply shocking.  My colleague found her lump in the shower, which prompts me to remind everyone to self examine – look and feel.  If you want to know more, there are lots of websites, like bcna, with further information.

My last little while in pictures

It also occurred to me this week how far I’ve come and how much I’ve learnt along the way.  It’s been seven weeks since my diagnosis and two surgeries and many appointments later, I feel like I have a whole new vocabulary and have learnt lot about breast cancer.  Lots of information to take in, but for me, being informed has been an important part of this journey that I’m on. As always, I’m grateful to my entire medical team for answering all my questions.  In thinking about how far I’ve come, a lot of my path to wellness has, so far, been about the surgeries.  So, I was thinking that it is time to show you all a few pictures of life post mastectomy.

My scars, or battle wounds, should give you a clear picture of exactly what I talk about when I call myself a ‘one breasted unicorn’.  And although I am now very used to them, but they can be confronting.  For me, the scars (my mastectomy scar and a separate scar under my arm from when I had the axillary clearance) are a constant reminder of the life and game changer that is cancer.  These scars will be with me forever, and whilst I will treat this particular cancer, the experience has already and will continue to change things for me. A lifetime of check ups, vigilance, less stress, healthier living, ups and downs and everything in between.  Ready yet?  Here we go…

As you will have seen, my scars are healing well and I’ve recently graduated from wearing a soft form to a prostheses.  The prostheses is important because it balances me out and should assist me to walk straight.  Also, frankly, it looks better than the soft form did.  At 300 grams, its not light, but it’s certainly lighter than my (824 gram) breast was.

The Weekend to End Women’s Cancers

Finally, I wanted to take a moment to mention the Weekend to End Women’s Cancers.  It’s a walk which is taking place on 2 and 3 April.  The aim is to raise money for the Harry Perkins Institute of Medical Research and spread awareness of the important work they are doing for all women.  The walk commemorates women who have been lost to breast of gynaecologic cancer.  I had the pleasure of meeting Bec Richardson when we worked together as junior lawyers.  Bec is a very courageous woman – having lost her beautiful Mum to breast cancer, she is having a double prophylactic mastectomy and reconstruction in April.  She is walking with the Paterson Dowding team – if you would like to sponsor their team, click here.   Research is such an important part of the cancer puzzle, so all donations, big and small, assist.

Happy weekend to everyone!
Krissy x

 

The daily grind

IMG_1579

The only picture I could find in my library of coffee… taken in Lefkada, Greece, 2014.

Since my last blog post, not much has happened actually.  I’ve been adjusting to ‘normal’ life post surgery.  I have also been feeling a little flat thanks to a summer cold, so excuse my tardiness in writing this next post (or getting back to messages and emails).  What else?  I’ve had my bandages taken off (hooray!) and started seeing a new physio – she is excellent and a breast cancer survivor like me.   If you’re looking for someone to assist you post operatively, visit Petrina at Mind Body Physio.

Passing the days

It’s been quite interesting to me how quickly I have adapted to non-working life.  I was always so busy at work that I now can’t quite figure out how I fit everything in.  These days, my pace is a little slower, but I certainly haven’t been short of things to do during the week.

I start my days pretty much like I would have started my work day – doing admin (read, paying medical bills, sifting through the pamphlets and information I’m sent in the mail and googling/researching things) and eating breakfast.  Then I usually have an appointment or two before a light walk and some cooking in the afternoon/evening.  I also have a range of exercises that I do every day to strengthen my chest and left arm post surgery.  Finally, there are visits to and from family and friends which break up the days.  I am rarely, in fact never, bored and I seem to find things to keep myself entertained everyday.

I also just finished a book which a school friend sent me in the mail.  Which is a neat segue into my next point.  Since diagnosis, there have actually been so many nice changes to my day(s).  For example, I actually read a whole book.  Unusual for me in my former life – when I was always reading for working.  Also, a friend sent me that book in the mail.  So rare, yet such a lovely gesture.  By the way, the book is called ‘Dying to be Me’ by Anita Moorjani.  Well worth a read if you’re looking for an uplifting true story about a woman who had a near death experience and how it changed, and saved, her life.  Anyway, I digress.  I’ve also been fortunate to be able to spend a little more time with my beautiful little niece who is in hospital.  And just this week, I participated in a very uplifting, very 21st century prayer group which was convened by one of my Mum’s Greek Orthodox friends in the USA, by teleconference!  With a priest from America.  What a nice idea that was.  More silver linings.  They’re everywhere, if you just open your eyes to them.  And, I am extraordinarily grateful to be finding them.

Dietary adjustments – what, less sweets?!

Since 1 February, I have also adjusted my diet a bit.  Processed food, white bread, refined sugar, soft drinks, cow’s milk dairy products, alcohol are mostly all out.  More vegetables and fruit are in.  I’m also eating a little less meat.  I’m trying to maintain a relatively balanced PH and so eating lots of alkaline foods.  I’m a bit of a foodie, so I really couldn’t give up everything entirely, but I have most certainly cut back.  When a friend (thanks Amy!) brings you a home made wagon wheel, you really do just have to live a little and eat, at least some of, the wagon wheel… The adjustments in my diet mean that I have been trying new cafes that have organic and healthy vegetarian options, juicing and eating way more salad.  So far I’m enjoying the healthy options at Hylin and Pearth, both in West Leederville.

Get your tits out

It has also occurred to me that I now freely use the phrases ‘would you like me to take my top off – bra too?’ and ‘how would you like me?’.  Phrases that some might use regularly, but being the somewhat conservative woman I am, not ones that freely flew out of my mouth before, I can assure you.  I have also become very comfortable taking my top off and showing my excellent medical team my breasts – well actually, my one breast.  A new norm.  Accidental flashes at the beach will never be scary again..!

Krissy xx

Putting things on ice

I suspect that this blog post will get people talking.  In fact, it has had me talking.  Fertility is a hot topic amongst women my age at the best of times, and we, me included, all have views about fertility and children. Deeply personal views, might I add.  And so I caveat this entire post by saying that this is probably my most personal post.  Writing about my ‘boobies’ is all pretty personal, but sharing decisions about fertility seems even more so.  So, in my usual honest way, I am going to share my thoughts and my decision with you, but this is just my decision and it certainly won’t be right for others, just me.

You now all know that I always wanted to have three kids.  But, that was pre-cancer.  Post diagnosis, I am not so sure.  And following a visit to the excellent fertility specialist, Dr Doreen Yeap, the only thing I am now sure of is that I don’t want to play with my body too much.

Options

Dr Yeap explained to me that I essentially have four options:

  1. Freeze my eggs using IVF – in vitro fertilisation where matured eggs are removed before being frozen. *
  2. Freeze my eggs using IVM – in vitro maturation where immature eggs are removed and matured in the lab before being frozen.
  3. Have zoladex injections to shut down my ovaries during treatment.
  4. Do nothing.

My rant

Of course, these decisions would all be less complicated if I had managed to have some babies.  But of course, I haven’t.  I never found the right man, I never made the time… blah, blah, blah.  To all the women out there that think there’s plenty of time for these things, to the extent that you have the ability to decide when to have babies (i.e. you’ve been lucky enough to find someone you might like to have babies with), have them.  Don’t wait.  Dr Yeap told me that the average age of women in her clinic is 37.5. Most of the women she sees? Lawyers, doctors and engineers. Enough said.

So it seems that in five years when, God willing, I am finished with chemo, radiotherapy and tamoxifin, I will fit right in to Dr Yeap’s demographic.  The big question is will I need to see her and will I want to see her?

Decisions, decisions, decisions

The biggest difficulty I have is that I have an oestrogen positive cancer.  So, what precisely does nine months of raging hormones, including oestrogen, do to my body? No one knows for sure if it provokes a recurrence of the cancer, but, Dr Yeap and my oncologist, Dr Ru-Wen Teh, tell me that its a risk.  A risk that to me isn’t particularly palatable, not now anyway.  Who knows if I’ll feel differently when I’m older and, with any luck, married.  But I don’t want to close off the option of having a biological child entirely.  I just don’t want to play with fire too much.

So then, what is the answer?  Freezing my eggs, whether with IVF or IVM (which I would be a candidate for only because I have polycystic ovarian syndrome) will require me to undergo IVF at the end of my long treatment journey.  IVF has helped many people have children and I think it is a wonderful service.  I just don’t think it’s for me – so many hormones, so much provocation.

Instead, I am going to have the zoladex injections and wait.  I’m going to have the injections, take the tamoxifin (for five years at least) and then see what my body wants to do at the end of all that.  I wonder if I will regret the choice if in five years time if I can’t have children.  I don’t have a crystal ball, so I really don’t know.  What I do know is that my head and my heart are aligned and neither are telling me to freeze my eggs.  I have also always been open to the idea of adopting, so that also gives me a level of comfort. What’s not to love about giving a child in need a home?

Resources and donations

As I was editing this post, I received a call from the breast care nurse at St John of God.  What a wonderful service the breast care nurses provide.  They have given me so much information about everything from physios, to support groups to a free bra and soft form (that cotton wool thing that resembles a breast) to emotional support to recommendations of good plastic surgeons, and everything in between.  I often ask them the most ridiculous of questions, but they’re so patient and helpful!

Which brings me to my final point.  Everyone has been so very kind and generous in the past month.  But I often wonder about those women (and men) who have breast cancer and don’t have the huge and awesome support network that I have.  What do they do? What do the single mothers who are trying to juggle work, treatment and kids do?  What do elderly women without family around them do?  They rely on all the excellent resources (I hope) that are available to assist them.  Organisations such as:
Solaris Care
Breast Cancer Network Australia
The McGrath Foundation
National Breast Cancer Foundation
Cancer Council WA

All of these organisations have already helped me and I have only been on this road for one month.  So, next time you wonder what you might do with some free time you have or a few spare dollars you need to spend, particularly before the end of financial year, give a thought to donating either your time or your money to one of the many organisations that help so many people.

Much love,
Krissy xx

* Want to know more about freezing your eggs? I read this Marie Claire article which is actually a pretty accurate summary (I think). In a nutshell, you’re looking at about $10,000 for either IVF or IVM and could get anywhere between 5 to 15 eggs to freeze.  Sometimes its entirely successful and sometimes the eggs don’t thaw that well at all.  I’m told that if you freeze 10 eggs, you should get one viable embryo.