Just call me the Lab Rat

It's 4:45am. I've been awake since 3, resettled both boys and spent the last hour flicking though Peter Jackson's Behind the Scenes youtube clips of the Hobbit. Note to self: must visit Hobbiton when we eventually take a holiday in New Zealand.

It's been a hectic couple of days after a weekend of rest and recollection. I woke up on Monday feeling much better and brighter after last Friday's meltdown. I think giving myself the weekend to just let it all out and sleep as much as I could really helped. Whilst I can't let myself wallow in self pity, I also can't waste energy trying to be brave all the time so I'm happy to give myself moments to crumble and then take a deep breath, pick myself up and just keep going. Only moments mind you...thank god my vanity prevents me from blubbering for too long. I look like crap after ten seconds of tears, rather like a puffed up toadfish with sunburn and cruelly it takes forever for my face to return to normal.

Anyhoo, back to the last couple of days...which were spent at the Canberra Hospital being scanned...and scanned...and scanned.

Monday morning I arrived at Nuclear Imaging expecting to have my Bone scan and bone density test. The technician who greeted me upon arrival was a woman very petite in size but freaking scary in demeanor. "What's your name, I don't have you on my list, what do you need???". Turns out that they had booked me in for my Gated Heart Pool scan and the bone density. So I meekly followed instructions, had my bone density test by Little Miss Abrupt and was relieved to be passed over to the Nuclear Medicine Specialist for my heart scan. The heart scan was more complicated. The technician inserted a cannula (with great difficulty thanks to collapsing veins) through which she injected first a primer, then she drew some blood, mixed it with the radioactive tracer and re-injected it into my blood stream. After a twenty minute wait I went in to be scanned which took about half an hour. All in all I spent about two and half hours at Nuclear Imaging. I popped up to Oncology afterwards to chase up the Bone scan request which NI insisted they didn't have. It was lunch time when I left the hospital. I stopped in to Manuka and had some lunch at the french bakery on the way home (hmmm, this is becoming a habbit). I'm not sure if it was what I had for lunch or just another side effect from medication but I was incredibly ill with gastro like symptoms that night. Not pretty, not pleasant.

Tues morning I was woken at 7:30 with a call from Oncology's head nurse who informed me that I was to start chemo on Wednesday...as in tomorrow...24 hours. I came to my senses quicksmart. Bloody hell, that was quick, right then!

I had to go back into hospital for CT scans of chest, abdo and pelvis which involved drinking the repulsive green cocktail, another cannula, an injection of contrast fluid and lying on the scanning table with both arms stretched back past my head which, post mastectomy, was more than a little tricky, we had to improvise. Today's scans were done and dusted in just over an hour so I popped back to oncology to pick up my chemo meds then through the rabbit warren of hospital corridors to pathology for blood tests.

For all the poking, prodding and general discomfort it was a very productive day.

Yesterday afternoon was spent with my boys and last night I packed my bag with healthy snacks, hand cream, audiobooks and magazines. Am tossing up as to whether I take my heavy digital SLR camera or just make do with the grainy images my ipad camera takes. I want to document this experience in photos as much as possible. Practicality says make do but the perfectionist in me says put up with the heavy bag and take the Canon.

I suppose the reason why I'm up blogging in the wee hours of the morning is that I'm nervous about how I'll react to the first chemo. My body has grown a great deal more sensitive with age...the last five years in particular to things like make up and medications. Aside from cigarette smoke, nothing used to bother me in my twenties. I'm a little worried that it will take no time at all for my body to react adversely to the drugs today. I am confident in the ability of the oncology nurses and know that they'll get on top of it the moment anything adverse presents but I still dread it all the same.

Well...its almost six. I think I should try and fall back into bed for an hour.

WIsh me luck! xx

 

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Hello Floodgates

Yesterday afternoon was pretty rough emotionally. I tipped over the edge from 'coping quite well' to 'completely-lost-the-plot-I-can't!-I-just-can't-do-this!!!'. My bravado was shot to smithereens.

And all over a hospital admin glitch and a tantruming four year old.

Thursday left me feeling quite turbulent inside. I went into that consult having read plenty about chemo and hormone therapy. But having a team of health professionals, my team of health professionals, give me the long list of side effects that would and could happen to me over the next five months, coupled with the sight of so many other patients in various stages of chemo had a profound effect on my stiff upper lip. All of a sudden I felt fragile and the weight of my situation began crushing my resolve. I tried very hard to shake it off and gave myself a stern talking to which got me through the rest of Thursday.

Friday morning we enjoyed a playdate at a friend's house. When we got home I booked my CT scans at the private imaging centre for Tuesday. The receptionist who took the booking quipped kindly that "it wasn't fair, I was too young"...she meant well but her pity just pushed my tears towards the surface. Next booking was the bone scan at Canberra Hospital's Nuclear Imaging. My oncologist had sent through the request but the female receptionist couldn't seem to find it. Not a problem, I thought, I'll just chase it up with Oncology and try again later in the afternoon. Oncology were helpful and friendly, told me they'd follow it up and to try NI in a few hours so I took a nap.

I tried again just after three but the young bloke at Nuclear Imaging couldn't find the request. I was starting to feel like piggy in the middle. It was at this precise moment that Harry walked in screeching like a cockatoo about a toy that wasn't working. Not being able to hear a thing I asked Master Four to go outside to Daddy but he refused and continued to scream all the louder. (What is it with preschoolers and their sixth sense for interrupting important phone conversations?). I apologised but the noise obviously didn't impress the NI guy because he said dismissively that there wasn't anything on the system. It was then that I begged him to help me out, could he please follow it up with oncology. By this time I was in tears. I'd been the good, brave patient for four weeks. I'd taken the loss of my breast with as much positivity as I could muster but a lost form was simply too much to bear. He said he couldn't help me and with that I hung up and started sobbing to the point of hyperventilation.

By this time Hubby had come in from the washing line and began dealing with our four year old drama queen. By the time he had put Harry in time out and convinced Jack to stop hugging his ratty big brother when he was being disciplined, I was found curled up in a ball on our bed...a complete mess.

My husband...my calm, collected knight in shining armour.

He held me, let me rant about how I couldn't cope anymore, then, when I'd calmed down, told me that I was going to go and sit out on the back deck with the cup of tea that he'd make, relax in the fresh air with a magazine and not worry about it. He would deal with it.

And that is exactly what happened. He understood. He had been watching me for weeks, watching how I had been holding everything in and was ready to swoop in and take things in hand when it all got too much.

I wasn't angry with Harry for throwing a tantrum. I knew that he was tired from preschool. I wasn't even angry with the Nuclear Imaging guy. It was just a case of the proverbial straw that broke the camel's back.

An hour later, both boys were happy and playing, I was back in bed resting and Hubby came in with the bone scan booked for Monday morning. Turns out that NI guy had me in the system as a fourteen year old. Silly, silly mistake. But it had all been sorted thanks to the lovely oncology receptionist and my fucking awesome husband. God I love that man!

 

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Oncology Overload

I had my oncology consult this morning.

It was quite a confronting few hours.

As I sat down in the waiting room the realisation hit me that I was the youngest person in the room by a good ten or fifteen years. The majority of patients were between sixty and eighty and I felt very much out of place. A youngish newbie who didn't really know what she was in for...not a jot!

A nurse called me in to get my obs and wouldn't you know it, I've lost six kilos since the Big C knocked on my door. Ironic that it took cancer to relieve me of all that Christmas Cheer and get me down to my goal weight. Fairly fast weight loss program but not one I'd recommend. I'd prefer daily exercise and a decent diet over surgery, drugs and immobility.

I met my oncologist Dr Davis shortly after, whom I immediately liked, and we sat down for an hour long discussion. In hindsight it was probably the one consult that I really should have brought someone else along to. The sheer volume of information was quite overwhelming and by the end my brain was imploding.

Essentially, after a very comprehensive consultation Dr Davis recommended the TAC chemotherapy schedule which involves six rounds of chemo administered via IV once every three weeks. TAC is short for the chemo drugs Taxotere®, Adriamycin® and Cyclophosphamide.

Just a sample of side effects include:

Infection due to low white cell count, Nausea, Hair Loss, Mouth Ulcers, Numbness in fingers and toes, Heart damage (potential permanent heart failure, oh yay), Menopause and Blood clots. Some are relatively commonplace, some are very rare. A game of wait and see. Thankfully our family is complete so fertility issues need not apply.

Because my cancer is estrogen receptor positive I will start hormone therapy after chemo which will mean taking Tamoxifen once a day for a minimum of five years and possibly stretching out to ten based on current studies. Food for thought was also removing my ovaries down the track. Side effects include early menopause, cancer of the uterus and blood clots.

After all of that rather delightful information was delivered I saw the head nurse and we discussed the issue of my veins...or rather the lack of nice plump veins remaining in my left hand since the right one is out of action post surgery. I had to decide if I wanted to have a central line, also known as a port, inserted under the skin in my chest. The pros were that chemo can be administered and blood can be taken without the risk of veins collapsing halfway through the treatment. The con...infection and clotting, general anaesthetic & surgery to insert and remove the line etc etc.

I just wanted someone to tell me what I had to do. My mind was in meltdown. I didn't really want to have a port if I could help it but didn't know if the two half decent veins I had left would hold up for 5 months of chemo...geez louise, I don't know! I had to make the decision then and there and in the end I decided to hope for the best and not get the port. Worst comes to worst, if my veins are kaput by round three or four, they'll wait until my white cells are high enough and I'll get the port. Risky but then this whole ride is riddled with risk.

Next was the chemo education session with the nurse which was another 40 minutes of re-enforcing everything that my doctor had discussed with a whole lot of practical advice about coping with the chemo and a tour of the treatment room. The nurse had a great sense of humour which helped. Still...I walked out of there carrying a small mountain of paperwork and pamphlets feeling dazed and overwhelmed.

Where was I to begin...how could I start processing it all?

I wandered slowly through the corridors of the hospital, made my way back to my car and sat staring at the dash. I needed a quiet place to think. I realised that I'd forgotten to have breakfast in the rush to get Harry's lunch ready for preschool...I needed something to eat and I needed a strong coffee. I found myself driving to Manuka to Urban Pantry my favourite little haven, grabbed a seat at the back and ordered soup and coffee. I spread my stack of papers and my diary out on the table and started making a To Do list. I'm a list girl, always have been always will be.

First things first...booking all the tests required before chemo began. Bone scan, heart scan, ct scan of chest, abdomen and pelvis and several blood tests. I consumed a comforting bowl of cauliflower, ginger and corriander soup with sourdough toast which helped ease the shakes. Once the practical tasks were organised in my diary I packed the rest up and had my coffee. I couldn't read the other booklets. It was just too much in one hit and I was fighting hard not to burst into tears.

I paid for lunch and walked across the small green to a little shoe boutique. A mecca of beautiful shoes. Beautiful expensive shoes. I bought a lovely pair of Aubrey London leather flats and didn't care a wink. Then I went into the bookstore and bought a beautifully illustrated edition of Alice In Wonderland for a dear friend who gave birth to her beautiful baby girl yesterday...a little girl called Alice. I still felt numb and turbulent and lost but I was surrounded by beautiful things. I needed a bit of beautiful to help cancel out all the ugly that had invaded my morning.

Then I came home to a very happy little boy regaling tales of preschool and new found friends. And a message from a beloved friend from far up north which included this...

Encouragement, perfectly timed and gratefully received.

I will give myself the time to work through this information. I will allow myself to feel how I feel. I will accept comfort in all its beautiful forms. I will believe in the above affirmations. I will get through this, day by day.

It is all I can

 

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Feeling Female

I went out to dinner with my husband tonight, first time in...oh gosh, I can't even recall...I think last September maybe? Talk about well overdue! Our wonderful neighbours came over to babysit, pushed us out the door and told us not to come back until we'd had a good time. We are so freaking lucky to have them living next door! And so we did have a good time, just the two of us talking about life, the universe and everything over a glass of white and a bloody fantastic pub meal at the local hotel.

It felt nice to put on a dress and a pair of heels. I can't confess to feeling glam or the least bit sexy but it did feel good to be out of pyjamas.

For the past four weeks I've felt like pieces of my femininity have been stripped away from me. Losing my breast was hard but it was having all my hair cut off that affected me far more than I thought it would. I know that seems utterly ridiculous because there are a gazillion completely gorgeous women out there sporting short hairstyles. Maybe it's because the choice to have my hair cropped wasn't really mine. Chemo is on the horizon and it is threatening my vanity big time. I don't love how I look. My hair used to be one of the features I'd always felt good about. Now, it's just a constant reminder of what is happening to me.

My husband on the other hand is taking everything in his stride. He told me tonight that he's never felt closer. And I not only believe him, I completely agree with him. How I feel about my appearance is something I will have to work on. He still loves me, in fact he's never loved me more than he does now and that makes me determined to get over my vanity and try to embrace this ever evolving version of me. I have to, because if I can't handle a pixie cut then going bald is going to be a real bitch!

I suppose its just part of the process. Some things are easier to adjust to than others.

 

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Our simple patch of paradise

My husband and I first met in the far north of Australia on a tiny and very remote island in the Torres Strait just over a dozen years ago. We've lived in several other beautiful, tropical parts of Queensland and the Northern Territory since then before settling down in Canberra, an altogether different kind of paradise. It is one of the coldest parts of the country but in my eyes also one of the most beautiful with it's four very distinct seasons. Reminds me of when I lived in New York.

Before kids we shuddered at the thought of joining 'suburbia' with a house and yard and all the maintenance it entails. But then we moved to the nation's capital for hubby's last army posting and we both developed a longing to put down roots. While we loved the excitement of discovering a new town and making new friends, we desired stability and a home that was ours. Six months later we found it...a place to call our own, a place to raise our kids, a place to plant a vege patch and spend time pottering in the garden.

The house was a typical 1960s fibro cottage, backing onto the local primary school. It was far from grand but it met our needs as a first home and was within our budget, allowing me to be a stay at home mummy when the time came. The previous owner had renovated the interior including a very decent kitchen, bathroom and laundry so we were happy to move in and not touch a thing. The exterior was very dull...concrete driveways on both sides of the house with a very sad garden at the front and a rather plain yard with a little shed in the back.

Eighteen months ago we renovated and landscaped to put our stamp on it. We put in double glazed windows and doors to keep out the cold, clad and insulated the exterior of the house, installed solar tubes on the roof for hot water, removed three quarters of that awful concrete, planted a beautiful garden filled with trees from front to back and finished off with a vege patch complete with fruit trees and a hen house.

We now spend a huge amount of time outside in our garden. Its a wonderful safe and interesting place for our kids (and the neighborhood's kids) to play, a fabulous spot for entertaining and brings so much joy to our lives.

Hubby has done an amazing job with the veges, fruit trees and berries...we have a varied and abundant harvest all year round. The kids love getting their hands dirty and have a great understanding of where their food comes from.

I love filling baskets with our eggs, fruit & veg, herbs and preserves to share with our neighbors and friends.

 

I love our simple patch of paradise.

It is a healthy, healing space.

Suburbia...I can't believe that we ever scoffed at it!

 

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Wascally Wabbit!!!

Toddler vs Preschooler in the Battle of the Locomotive

Toddler wipes the floor with Preschooler

Actually, Toddler bites the arm of Preschooler and Preschooler squeals like a stuck pig yelling

"He bit meeeeee, He BIT MEEEEEEEE!".

Toddler found grinning like a Cheshire Cat.

Oooooh this child.

He is five parts cuteness and five parts pure mischief!

 

 

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Goodbye drain, you've served me well.

Here I was, sitting on my bed, blogging and feeling blue when Nurse Jane popped her head in and brightened up my day with the news that my wretched drain could be removed, (golly I sound ungrateful, I really do appreciate just what a great job you've done little drain, really I do!).

Hubby was on hand to take some happy snaps of the procedure. Please note that for some the following pictures may be a bit too graphic to handle. Proceed at your own risk!

 

Just a quick slice of some stitches...

A little tug & a cough times three...

...and pull...

Voila...

Jane removed the dressing across my breast and put a new one over the site of the drain to soak up the little bit of liquid that will continue leaking out over the next 24hrs. After that the fluid will start to dissipate and re-absorb into my body. It feels really good to be free of the tube. Hurrah! Thanks Nurse Jane!!!

p.s. Is it just me or does anyone else find it just a little hilarious how my 'new' boob stands to attention when I'm lying down. It really does look ridiculous compared to my other 'real' boob on the left which naturally flattens out a bit with gravity.

 

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Just a dip

I've been struggling to keep my chin up for the last couple of days. A bit of 'I've had enough of being sick', a lot of 'I'm tired of this wretched drain protruding from my body' and some of 'I'm not sure if I can get through the next 6 months intact'.

Bound to happen I suppose, I couldn't honestly expect to be chirpy 100% of the time and I'd be deluding myself if I didn't acknowledge the dips on this rollercoaster ride.

I've been having some rather upsetting dreams lately about finding tumours in other parts of my body...I hope that its just a case of my brain working its way through a few of my fears and NOT that its a premonition.

On a good note: we've managed to snavel an extra day of Preschool for Harry which is a blessing. He adores going to 'school' with all his new friends and the fantastic activities that go with it. Life has been turned upside down for him too lately so having an extra structured day in the week will really help. In fact our weeks are quite full now. Mondays are home/playdate days, Tuesdays are swimming lessons, Wednesdays are library & the park, Thursday/Friday are Preschool. It also means a bit more time just one on one with Jack which will be lovely.

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A little night music

 

We've just come home from a truly magnificent afternoon at the Canberra Symphony Orchestra's annual concert at Government House. It couldn't have been a more spectacular day for such an event with abundant summer sunshine, a soft breeze and a perfect temp of 26 degrees, (Previous years were far more dramatic with thunder, lightening and bucketing rain).

This year's theme was a European Picnic.

 

I love how relaxed this event is. Everyone comes armed with a picnic hamper & champagne and we all thoroughly enjoy a few hours lounging about under the poplar trees listening to incredibly beautiful classical music.

We are so lucky to be living in Canberra. And this is Canberra's centennial year so there are going to be even more fantastic events like this one. I'll be making the most of them whenever I feel well enough.

 

On another note...I went to the salon this morning and got a pixie crop. Probably my last cut before chemo. The reality of losing my hair kind of kicked in as we drove home. Yep, this thing is real isn't it...

 

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Babies blissed out on booby juice

I breastfed Harry for 14 months and it was a truly blissful experience. I would spend entire feeds just gazing at my tiny son, in awe that he was mine. I adored it when he became milk drunk at the end of each feed, a contented smile turning up the corners of his beautiful little mouth.

I had a slightly less blissful experience with the Jackman. He latched on the moment he was placed on my chest and it was beautiful. By week two I noticed that he was struggling to attach properly. A quick procedure fixed his tongue tie and feeding was fab for four months. Then the mastitis kicked in... seven bouts of it to be exact. Seven bouts over six months. I probably should have switched him to the bottle much earlier than I did. I probably shouldn't have battled on for as long as I did but the perfectionist in me didn't want to give up. He was my last baby and although I'd had enough of 'ow, bloody ow' mastitis, I was reluctant to cut that breastfeeding bond. In the end Jack self weaned at 10 months anyway...and that was that.

 

 

Still...I am proud that I nourished my two boys, I am proud of my body for its abundant supply of super booby juice which fattened them up in their first year. I am immensely grateful for the bond it created between my babies and I. I am so thankful that I got to breastfeed my kids before the Big C arrived.

 

 

Aren't our bodies amazing! Isn't it incredible that we can create human beings and nourish their gorgeous little bodies with our own!

 

 

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