Tuesday 31 December 2013

Day 113: Happy new year!

It's nearly 9p on New Year's Eve. Families are lined up along the Manly harbour foreshore to see the early fireworks that are due to start shortly. Remie is asleep upstairs and I am enjoying not fighting the crowds. Now, 8 minutes later, I have just seen the spectacular fireworks display over the entire harbour on TV (and for those who are wondering, the design on the bridge was some sort of Reg Mombassa (from Mambo fame) robotic/lunar face (from what I can tell). This morning I woke up to the news that a very good college friend has recently been diagnosed with lymphoma. It rocked my world. It's bad enough that this stuff has happened to me; it's not supposed to happen to good friends whom I love. I know she will be fine. But I'm sad she has to go through the fear of the unknown. And I don't like being on the other side of the world and not being able to help. I'm thinking that "other side" theme that I experienced at the end of 2013 is likely to continue in 2014. By that I mean my perspective of being on "the other side": of receiving, not giving, meals on Meal Train; of not having the energy to rally; of covering up and thinking the sun is too bright (during my week post-chemo) and of not trying too hard on the social scene. It seems to be a bit of a gift to learn to see things from a different perspective and learn to appreciate how hard some people have it. Wishing you all a happy and healthy 2014 in which we all strive to find the good bits.

Sunday 29 December 2013

Day 111: The grey area

We've had a few days of little adventures (snorkelling at Shelley Beach and BBQing/swimming at Manly Dam), visiting with friends and chilling. Nice. The downside is that, since we're still at home, I get sucked into chores (like taking down the Christmas tree today). We've also been spending lots of time together as a family, and it's becoming apparent that it'd be good to shake that up a bit. I've managed to forget my plight from time to time as I'm feeling pretty good. My hair loss has slowed (I even still have eyelashes and eyebrows) so it looks like I'll ring in the new year without looking like a chemo patient. I'm tired, but no more so than usual with 2 kids. I am finding that my patience is very thin, but that could be too much togetherness, not enough real exercise and underlying frustration with my lower than normal level of energy. This battle is seriously a mental one for me. I have to make the effort to stay on top and be positive otherwise the hole could get deep. There is a chance that, at the end of these nearly 6 months of treatment I will be no better off than I am now. I can't think about that. The other day a friend was lamenting the colour of her hair, and I pointed out her luck in having hair to colour but didn't think too much about the state of mine. I am watching the "happy day" links in our countdown chain being taken off and the black links approaching. That can get me down if I dwell on it. I am the "fun planner" in our family but am struggling to keep it going. That's frustrating as I want to make the most of all the good days and am watching so many people go about their holiday adventures blissfully unappreciative of their good health. As I tell my kids, life isn't fair. And, as I've been told, this, too, shall pass. I'm going to go to bed believing that it all looks rosier in the morning.

Thursday 26 December 2013

Day 108: "Staycation"

After a day of playing in the surf and snorkelling at a harbour beach, I decided I needed to wash my thinning hair. That went reasonably well, but the post-shower hair combing saw a further loss of hair. Oh dear. I'm told I can still pull off the female chemo patient"comb over", but I anticipate that, too, shall pass as the next round works its magic. We made the most of me feeling good, the nice weather and our local surrounds today by playing in the surf at our local ocean beach after brekkie at Havana Beach. We bumped into lots of friends at the beach and enjoyed the sense of community. After a few hours out of the sun at home, we headed to Fairlight beach on the harbour to snorkel. The kids had great fun finding fish and diving down. They wandered the rocks for a bit before Remie's Kindy bestie came for a quick swim. We've made our list of things we want to do in the next week and a half to enjoy our holiday at home. I'm hoping to fit in as much as possible before I feel terrible again

Day 107: Slowing down after Christmas

Today was a wonderful day of pottering and generally slowing down after the past few days of packing in as much as possible to celebrate Christmas, old friends and feeling good. On Christmas eve day we did a 4 hour sailing cruise on the harbour with Greg, Lee and Mr. And Mrs. T. Nick loved the sailing, Alex and Lee helped and the rest of us enjoyed seeing the sights and catching up (Remie loved doing her art). Nick, the kids and I then raced back to Manly to go to the 4.40p kids' service at our local church where Remie was an angel (hey, there were camels and a donkey walking down the aisle, so stranger things have happened). We got home, fed and bathed they'd kids, passed them off to Netty, who was spending the night, and headed into Manly to meet our visitors for dinner. It was another great night together. Nick and I went home, and together with Netty made sure all was ready for morning. At 6a Remie was very excited to check out whether Santa had come. Alex was up shortly thereafter and the frenzy started. The kids would've town everything open by 6.30a if we'd let them! We managed to drag it out until about 7.30a. We then had to get sorted for the relocation of our annual beach gathering to our house due to rain. It was a wonderful event with Fran and Emma and kids, p,us Steph and Mark and kids and guests and Greg and Lee. We convinced the latter to join us for lunch at Rachel's mum's, and as always Liz outdid herself. Greg, Lee, Alex and I left before dessert to get the boys back to their hotel to get to the airport for their flight. Alex and I got home a bit before 5p and Nick and Remie arrived shortly thereafter. It really was a great two days. I feel very lucky to have been able to spend some time with Greg, Lee and Mr. and Mrs. T. They are extended family so it was great to be able to see them around the holiday. I am thrilled to have had the energy to pull off the packed schedule. I suspect I'll get exhausted soon. I am grateful that Rachel, Liz and their family welcome us into their family on Christmas. It has made being away from our own families much better. And I am blessed by the love and support of people near and far. I am now fortified for the next round, but I will appreciate the heck out of the next week and a half until that happens. Happy Boxing Day!

Monday 23 December 2013

Day 104: Visiting with old friends

It is always interesting to find that we have the energy to do whatever we set as a priority regardless of where we are in our lives. At about 6a this morning, My dear uni friend, Greg, arrived in Sydney with his partner and family. I have been hoping that I would feel good enough to spend some good time with them, and I am! I actually think that I would rally no matter what, but I am excited that it is easy. Nick, the kids and I took a ferry into the city about 10a to meet them. Alex marked this momentous occasion by wearing a special tie, and Remie picked her favourite outfit and accessories. It was so exciting to see Greg and Lee at Circular Quay. We then found Liz and Art at the Four Seasons and ventured off to the Rocks in the 35 degree heat. Our gastronomic tour took in The Lord Nelson pub (which we had all to ourselves) and lunch at Pony. The kids took to the group like long-lost friends, with Alex holding Liz's hand and Remie taking on Lee as her new BFF. I so love that time and distance mean nothing to friendships that have been built over 25 years, and that my kids understand that. We left our friends to the bridge climb while we went home. Nick and the kids had a swim while I rested. Emma came to babysit so Nick and I headed back into the city for dinner with our friends. It was a wonderful night at Cafe Sydney (and we even remembered to take a few pictures) that I will treasure as I soldier on in the next few months. As we were all tired, we called it an early night to rest up for a day on the harbour tomorrow. I went to bed feeling very lucky to have this fabulous interlude in my months of treatment. I am constantly reminded of the amazing support of all the wonderful people in my life, and hope that my kids can be as lucky to find such amazing people and create their own extended families during their lives.

Sunday 22 December 2013

Day 103: Human again

I woke up feeling like I had returned to the world as a relatively normal, kind person. Woohoo! It is so much better to be part of the world and enjoy it than to be in one's own little reality and cranky about it.

As part of my return to the world, I enjoyed a coffee made for me by Alex. Divine. After brekkie it was off to Nippers, which was very exciting as Santa was coming for a visit (which he does every year by surf life saving boat - hilarious). The kids and I scootered/walked to the beach while Nick was out for a bike ride. We spent the day at the beach doing Nippers, visiting with Roz and Simon and kids, hanging out and having a swim.  It was great fun, and I lasted until noon before it was time to head home.

I was ravenous and made a huge and healthy lunch for all. I may have easily eaten for about 4. The afternoon consisted of quiet time and "Santa Claus is Coming to Town" DVD. It was over 30 degrees, so we appreciated our cool house.

We made it out to Christmas drinks at Vicki and Claude's, our first festive event of the year. It was so good to feel good enough to be able to participate in a social celebration. The kids came along and Remie helped prepare and serve some treats. We had sushi on the way home which was another fun and enjoyable experience.

Being occupied with not feeling good has certainly given me another perspective on Christmas. The woes of shopping and the pains of hangovers are far from my list of worries. I hope to take it all much less for granted next year and focus n being as kind to people as others have been to me.

Saturday 21 December 2013

Day 102: Mentally under a cloud

I was a grumpy puss today.  I was under that awful cloud of negativity and self-pity and couldn't get out of it, although I did try, until the end of the day. This did remind me that it takes an awful lot of energy to be down.

I woke up tired, having had Remie in twice from 2-3a. Then she was incessant, and Nick was slow in dealing with her and Alex was making lots of noise and blah blah blah. Nothing was right, least of all me.  My tummy was still a bit sore and my head hurt. After yelling at everyone, I decided to take myself off for a walk to meet Jen and Rach for brekkie.

Getting out and moving in fresh air cheered me up a bit, though I was a bit loopy and dizzy. The brekkie conversation made me sadly realise what a different reality I am in at the moment: there are no Christmas drinks, dinners or parties this year. It has not exactly been a festive season.

I went off to the markets, where I was joined by my family.  After a bit of shopping it was home and I went back to bed. Lunch and some Mersyndol for my headache made me feel better, as did sitting around the pool with Steph watching the kids swim. I had no more energy than that, which added to my annoyance on a lovely day. We made the effort to get out for a walk at South Curly to see the sea, but the kids fought, the sun was hot and I got cross.

I started to re-balance after a shower (my hair loss seems to have slowed, partly because so much is already gone) and a few minutes of reading the paper while the kids were in their rooms. My tummy was feeling better, so we all ate together very early. Watching "Rudolf the Red-nosed Reindeer" followed by "The Grinch" cheered me up, as did a bit of final present-wrapping to Xmas music once the kids had gone to bed.

I am now feeling nearly human and more positive. I know that I am always going to get frustrated with my inability to do what I usually do, but I really need to find a strategy so that I don't let my physical limitations drag me so far down emotionally and mentally. Thankfully tomorrow is another day.

Friday 20 December 2013

Day 101: Surviving

The kookaburras woke me with their morning song at 4.45a (!). Yes, tomorrow is summer solstice, the longest day of the year. That means early sunrises and very early-rising, loud Australian birds. If only that were the biggest of my worries.

My gut was still not happy this morning, but it settled fairly quickly.  After a quick brekkie, Susan came to do a little Christmas yoga with the kids.  Nick and i were treated to a fabulous "presentation" incorporating many of the poses the kids have been learning. The kids headed out on their adventures with friends again, and I was back in bed at 9.30a exhausted. I think it was already 26 degrees Celsius and was predicted to get hotter.

I got up at 11.30a feeling much better and had a family lunch as the kids had returned. I was still a bit queasy but ate fine, including my favourite ginger ale and Salada (Saltines) crackers. After some pottering around, we headed down to Little Manly beach, just down the road. We were armed with a kids' kayak, boogie board and sand toys. The temperature was reading 37 degrees so a swim was refreshing. As a total beach, sun and heat lover, I was disappointed to find that I felt really hot and overwhelmed by the brightness despite my sunnies and hat. I headed home after about an hour feeling tired and beat.

We had a few people drop by with food.  The kids finished Ing's spag bol before she'd left and Lucy dropped off some risotto. Rosalie popped in to say hi and tell us that she's home. All were heading out for the evening and, although I was feeling eft behind, I most definitely did not have the energy or desire to go out.

The evening routine was fine, with all tired enough to go quietly to bed. I was ready for bed myself after Nick and I finished dinner at 8p. I am feeling that enduring this round seems to be a bit harder. I loathe to think about round 5 is going to be like. I'm just focusing on taking one day at a time.

It's now nearly 9p and the thunder and lightening have brought cooling rain. Its definitely time for bed.  I am heartened by my cousin Justin's words of encouragement as follows: "I hope the bad days are few and we can soon look back on this time and smile".


Thursday 19 December 2013

Day 100: The Real Aftermath

My pattern with this "FEC" treatment seems to be that chemo day leaves me hazy, the next day I am ok but queasy and tired, and then the day after that I get the brunt of it. Good thing I've worked it out with only one more to go (before the switch to Docetaxel only).

I had a good sleep but woke early, thinking all was good because I didn't have the headache I had last time.  Whew. Alex brought toast and iced cranberry tea, so I popped my Dex and finished a few things online while the kids went to their Advent calendars. After a shower and eggs for brekkie, I was feeling tired and lay down on the lounge. Danielle and Hugo came to get Remie at 8a for her day with them, and after waving them off I headed back to bed. I got up to say hi to Lucy when she and Tom picked up Alex at 9a, said bye to Nick, who headed out on errands, and went back to bed feeling like death warmed over.

I woke up at 11.30a feeling better.  Nick and I had lunch (mine was crackers, a few slices of turkey and some ginger ale). Steph brought over a green smoothie to help me get healthy.

I was feeling good enough to get to my doctor's appointment at 1.30p, simply to get updated referrals for my oncologists. Dr. Karen was as matter-of-fact as usual, telling us that there are no guarantees and we should enjoy all the good stuff that's mixed in with the bad.

As we picked up aa few final Xmas items in the shopping ventre where the doctors' office is, I bumped into the librarian from the prep/junior school with which the kids' pre-school was affiliated.  I have always admired Victoria, who sorted me out quickly for the remaining gifts I had to buy. There was one of those good moments.

We picked up Remie from her play date, and she was beaming. We went to the pool, where we met Alex, Tom, Lucy and crew, and it was time for the year's final swim lessons. I got in and did 200m in fins again. Refreshing.  Even Nick got in and swam a few laps.

After a quick kids' dinner, it was reading and bed.  Remie made it until 6.20p, while Alex chatted with Nick and me as we ate.  He headed to bed at 7p, and I was in bed at 8p. It's now 8.25 and getting dark. I feel much better after dinner and water.  I'm hoping for another good sleep and possibly feeling more human tomorrow.

Wednesday 18 December 2013

Day 99: The Aftermath, Round 2

After being awake for a few hours in the night feeling not right in my skin, I was awoken at 6.40a to a lovely delivery of iced cranberry tea and some toast with avocado on a bed tray, all to accompany my first go of Dex (dexmethsone, a steroidal anti-nausea med). My gut was sore, my mouth felt funny and my hair kept falling out (I'm now sleeping in a chemo beanie to collect all the hair that is falling out at night), but other than that the day started off relatively bright. It had to: it was the last day of school for the year!

After a brekkie of scrambled eggs, Nick dropped the kids and me by school.  We picked up some sushi at the shop for lunch then headed into school. I felt a bit fragile (but not as loopy as after round 1) as I waited with some friends while the kids lined up to greet the "special visitor".  Santa arrived in a horse-drawn carriage and handed pressies to the teachers. Fun was had by all!

Next up were the K-2 picnics. Parents from Remie's class set up the table and the kids descended on the "brunch food". Miss C was given her gift by the class mums, and the kids did their Secret Santa. By this time I was feeling ready to go home, so I grabbed a ride with my neighbour, Steph.

I was feeling ok, but a bit tired.  I cleaned my mouth (can you tell I am fearful of getting mouth sores?), gave myself my Nulasta shot (white blood cell booster) and flopped on the sun lounge, strategically positioned in the shade. Jono came by to drop off some things before they leave tomorrow, then it was straight to bed for me.

I woke up 2.5 hours later feeling less wiped out. The kids came home from school very excited and went next door to Steph's for a swim with P and R.  Louise dropped dinner by, the kids ate and it was bedtime. At this point I could feel my energy dropping.

Nick and I tucked into dinner and then switched on the TV. About this point I started to feel like I had the flu with a sore gut.  So it's 9.20p and I'll turn off the light shortly. I have a bottle of water and my meds by my bed to hopefully stave off that awful headache I had on day 3 last time. Good night.

Monday 16 December 2013

Day 98: Round 2. 4 to go. At the 1/3 race mark.

It was a beautiful morning for a drive in Errol with Rach as my chauffeur. Steph took the kids to French, Nick headed to work and off we went.

I had a 9a appointment with Dr. Fran to check in, get the ok on yesterday's blood test results and discuss how it all went. I passed the tests and left with prescriptions for 2anti-nausea meds plus one for a sleeping pill to counteract the steroid anti-nausea. It was time to cross the street and go to "chemo cottage".

We waited 5 minutes for my recliner (the 4th one with the old cap machine)  to be vacated.  I put on my hoody and socks and settled in. Candy sprayed my hair with water, strapped on the cold cap and brought me a lovely blanket. That was followed by the lovely nurse working her magic and finding a vein. This time it was in the back of my hand, which was more sensitive than anywhere to date. The saline drip started and I was brought an anti-nausea tablet. At about 9.45a the bags of anti-nausea and chemo drugs started.

Rach and I chatted and the nurse told me it was time for the ice chips. I cheekily asked for an ice block and she magically produced one, followed by another. Bonus. Sue showed up with fresh juices which was divine. We all chatted for awhile, and when she had to leave Rach and I eagerly applied ourselves to finding new music. Ruth appeared as we were nearing the end and provided more great conversation, then it was time to head out about 1p.

After another enjoyable drive in Errol we stopped for a late lunch on the way home at 40 Beans, as per round 1. We got home just before Emma and the kids and sat outside while she sorted them out with afternoon tea and Xmas cookie decorating.

It's 5.30p and I am resting. I am definitely spaced out and feel a bit more queasy and tired than I did last time.  Perhaps the big sandwich for lunch wasn't such a great idea. I am drinking as much water as I can stomach (the taste has already gone metallic) and doubt I'll have much for dinner. All I can do is hope for a good rest and recovery.

Day 97: Veins

Hair schmair. After dropping off the kids at school this morning, i went for my day-before-chemo blood test. This is the one the oncologist has ordered to check on my white and red blood cell and platelet count plus liver function and myriad other things. Blood tests have become routine for me over the past few years preceded by years of donating blood in my healthy youth.  Sure I had some times when I suffered from low blood pressure and couldn't get the pint required, but usually it's ok.

Not today. Scott got one vial out of the usual vein in the inside of my elbow, but then it stopped. Since we needed 2 vials, he found another vein and got the rest. The first one is slightly bruised, which hasn't happened to me for ages. Nick pointed out that I did have a few drinks on Saturday night, then stood on the beach in the heat on Sunday morning for a few hours and then drank sangria for the afternoon. Dehydration maybe? D'oh. I've had about 10 pints of water since.

This minor incident made me conscious of the bigger possible issues. If finding a suitable vein proves too difficult, nurses recommend the installation of a "port", a temporary under-skin access to a vein around the collarbone. Apparently it makes the IV process quicker, but I'd like to avoid that if possible as is quite noticeable and it is summertime. Then there's possibility of the veins around the IV site getting hard or the chemo drugs leeching from the entry vein and harming the surrounding tissue.

I think I'd prefer the anguish and annoyance of pulling out another handful of hair thanks (there's that perspective thing again).

Sunday 15 December 2013

Day 96: Not quite up

Walking down to town to meet some friends for dinner last night in a too-short dress and high wedges for me (I was trying hard not to look like i have a disease, I think), I turned to Nick and said, "My hip squeaks, I hurt my thumb, my hair is falling out in handfuls and I go in for another round of chemo in 3 day; I don't think this is my finest hour."  I have to confess to bring a bit daunted by the reality of it all at the moment.

My hair came out massively in the shower today. More came out when I ran my prescribed wide-tooth comb through it. Bummer. I have stopped taking my vitamins and other naturopathic boosters as I am supposed to do 2 days before treatment. There is one more yellow link on our countdown chain before the stretch of 7 blacks.

I did have a very uplifting girls' pre-chemo champagne (replaced by sangria today) lunch. The dozen or so ladies were fabulous as there was much laughter. I had a good giggle when Kayleen told me that her daughter, who is in Remie's Kindy class, told her big sister that they have to look after Remie as her mum is sick with asthma (delivered in a very serious tone).  Listening may not always be a kindergartener's strength (tee hee).

I have had many people comment, email and send Facebook messages in response to my posts since I started.  I've been told that it's amazing to see what it's actually like on this side, and heard others tell me it's like I am there talking to them, making the distance seem smaller. I am so very, very thankful for all of you who are following along and "listening" to me share my view of this experience. Your presence and feedback strengthens me. I just went back to the quote Deb sent me when I had my meltdown in hospital: "Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says I'll try again tomorrow".  Its like you all are here with me. Your support is invaluable to me as the marathon-like nature of this journey stretches before me.  Thank you. 

Friday 13 December 2013

Day 94: Shedding hair

It's Friday the 13th. Spooky. My hair is starting to come out.  Spooky. I've heard it starts with a tender scalp. Tick. And then it starts coming out in handfuls. Tick (albeit small handfuls so far). Apparently it starts to happen around the second chemo cycle when one is cold capping.  Tick. And if one can persevere through the second cycle without shaving it will be clear whether the cold cap is working. Time will tell....

Today Nick and I met with my radiation oncologist, Dr. Susan.  She is very intense. She recapped for us her version of what had happened and where we were. All good. She ran through the role of radiotherapy in the process of preventing recurrence. We learned a few new things. She ran lots of statistics by us, which s the first time to date this has happened. She was clear that the choice is mine.  I immediately signed up ad I had already decided to bring on all the big guns in this fight. She mentioned the possibility of genetic testing since one of my maternal aunts had ovarian cancer. I signed up for that, too, if it was recommended by all my doctors.

Off to sleep hoping I don't wake up with too much hair on my pillow. The reality is definitely harder to digest than the prospect.

Thursday 12 December 2013

Day 93: Tired

Given how tired I am this week I can only imagine that I'll be in bed by 7p after my treatment next Tuesday! I even had some down time today pottering around the house. It'll be back to day sleeps next week for sure.

I had an early Christmas present this morning: coffee in bed delivered by Alex. Nick was away last night so Alex decided to get my coffee and Remie's (oat)milk by himself. Very thoughtful.

Then Remie made me smile when she received her medal for "School Spirit" at the K-2 presentation assembly. She was so very excited and I was proud.

Both kids have been pretty good lately, taking my treatments and side effects in their strides. They are aware but seem to have faith that we'll all get through it and they won't be too worse off with me not being able to be there to do things with them. I really hope that lasts into next week at least.

Wednesday 11 December 2013

Day 92: Need to slow down

I am clearly a Type A on deadline: after getting the kids and Remie's friend to the girls' 8.30a tennis lesson, I picked up a few things at the shops. Then it was Remie's Kindy awards session and a quick run to Mel's clinic to pick up more vitamins. From there I picked up Sue in Errol and we spent over 3 hours (we had to pay for parking!) at the mall shopping. It was on to school pick up and a swim for the kids in Steph's pool with P and R. Follow that all up with closet cleaning once the kids were in bed and I'm exhausted. I will try to get some rest time in tomorrow but I really feel like I need to make the most of feeling good and having energy as it will all change in 6 days.

Tuesday 10 December 2013

Day 91: Yoga

I finally got back to Sam's ashtanga class today for the first time since late September. It was great to be there and was a bit harder than usual due to the reduced strength and flexibility in my left arm due to the lymph node removal. It was worth it nonetheless.

The rest of the day was consumed with a morning tea with some of the girls from the Early Breast Cancer seminar series (there was a woman there who used the cold cap and  kept most of her hair while doing the same FEC-D regimen I am) plus pre-Christmas errand running.

Now I am tired. Apparently I am at the lowest immune system point now (10-14 days post-treatment). I'm hoping to be on the up tomorrow as its a busy remainder of the week and I'm starting to think about getting mentally prepared for next Tuesday's frozen toxic cocktails round 2.

Monday 9 December 2013

Day 90: Three months into it

It's funny how life's little things bother me less now that I have bigger fish to fry. After an exhausting early morning workout (I started tired), I chose to drive the kids to school (embarrassingly it is all of6 blocks) in Errol with the top down as the sun was shining and I needed to pick up groceries. We were rear-ended at the roundabout just outside school. It wasn't even a fender-bender (a phrase i recall from my dad) as it only broke the registration plate holder. Apparently the woman sneezed so her eyes weren't open. That's funny - but it wouldn't be if there'd been any damage or injury. But there wasn't, so the kids had a good story to tell and all is good.

I managed to get nearly all of my Christmas presents wrapped today plus all of my insurance and Medicare submissions up to date. Perhaps that is why I am exhausted and decided to pull out of the kids' school P&C (PTA in American) meeting I was planning to attend tonight). It's 9p and I'm turning out the light. I figure I have to rest up to enjoy my next 7 days before my next round on the 17th.

Sunday 8 December 2013

Day 89: What a good day to be alive

How could I not be happy to be alive and feeling great after yesterday? Add to that a glorious morning at Nippers (kids surf lifesaving), a trip to Santa during which my daughter asked for "a spell to make her stuffed animals talk" and her brother found and bought a Christmas gift for her with his own money, our annual visit to the Lindt cafe and an afternoon of Christmas carols and tree decorating?

I am somewhat concerned that I'm feeling as good as I am. As Jen said yesterday (echoing what Dr. Fran said at my first appointment), we do want to have faith the chemo is working and a few side effects demonstrate that. I hope I've felt bad enough that I don't get my dose increased in my next round. As there's nothing I can do about that, I'll just enjoy feeling good for another week or as long as it continues.

Saturday 7 December 2013

Day 88: "Shearing is caring"

About 5 years ago one of Alex's BFFs told us all in the playground that "sharing is caring".  I thought it was such a good phrase that I've adapted it to today's events.

Back in October, Sue invited the "triathlon families" around for an early dinner on 7th December, which seemed somfarvaway.  As the girls have thrown in the towel this season in support, we decided we could have a few drinks. Once I got my head around my treatment regimen and the possible hair loss that was due at this point (10 days after my first treatment), I thought it might be a great time to have Jono shave my head. We girls discussed it and mentioned it to the boys (big and not-so-big) to prepare them.

As this past week unfurled, I realised that's wasn't ready to shave as I still have all my hair. The 7 and 9 year olds, however, were keen.

We had a few drinks and a swim, and then Jono quickly set up shop. Hugh, who'd been counting down the days, was first. He was stoked! Billy was next, and Fred stepped up as a dark horse. Alex was then convinced, so he sat down.  The leaf blower came out to clean up, which was fully entertaining.

We then sorted dinner for the kids, and the next thing I saw when I looked over the balcony to "Chez Jono" was Owen in the chair.  I got choked up and had a cry with the girls. When I finished, Nick was in the chair! I am so unbelievably overwhelmed by this support that all I can do is hug the team. I will feel so very much braver when it is my turn thanks to the love and support of my friends.

The sheared 7, plus me.

The first 4, followed by...

The big boys (plus one last little one)


Friday 6 December 2013

Day 87: Life threatening?

I bumped into Sam in Coles, the grocery store across from school, just before pick up. She's been having some health issues so I asked her how she was. She told me that she's on some meds and is expected to be back to normal in 6-12 months. I sympathised with her plight and wished her well. "I'll be fine," she said.  "It's nothing like what you're going through. Mine is not life-threatening."

I hadn't thought of my journey like that since the very beginning. I don't actually feel like I am in a life-threatening condition, but I guess that's what it is. Based on breast cancer stages (2-3), I have from a 72-93% 5-year survival rate, according to the American Cancer Society. It makes me wonder what the average 5-year "life expectation6" rate is for a healthy 47 year old woman living in a first world country is. Hmmm.  As Kate said tonight at dinner, it's not worth getting bogged down by it. I think I'll just keep living me day at a time and enjoying g what I can.

Susan came for Alex's yoga session this morning. They had a ball. I had a lovely walk along the beach with Kylie and a great massage with Renee. I popped into our 2 local bike shops and found a few suitable options for Remie for a geared bike. Emma and the kids put up the tree (but it still needs to be fully decorated). And Kate came over to share a lovely night. What's not to be thankful for?

Thursday 5 December 2013

Day 86: Normal and great

I had the best workout today I've had since September.  Remie's doctor rang with the great news that her EEG we did yesterday was normal. The kids were in good form for most of the day. I think I've finally sorted out what in this journey our health insurance will cover. I had a great Sype session with my cousin Justin who is planning to come out from Hawaii in the new year.  My sister sent me funny jokes and posted hilarious comments on Facebook that made me laugh.  I had a lovely talk with my mum.  I had a glass of wine with the amazing dinner Libby brought by. And I gave Remie the 100 kisses she said she'd like to get every day. All in all, it was a fairly normal day that left me feeling great.

I learned something today that struck me as extraordinary but makes sense upon reflection: Amazingly, all of us have rogue cancer cells in our bodies - and most of the time the immune system gets rid of them... But not always. Wow. This bit of wisdom comes from the fabulous Claus in Seattle, whose son is doing some amazing work into T cell therapy for paediatric cancer patients at Seattle Children's and Juno Theraputics. It just goes to show that we don't ever really know what is going onion our bodies. All we can do is make the best of every day. 

Wednesday 4 December 2013

Day 85: Watery eyes (and other side effects)

The list of side effects for this chemo regimen I'm on include: nausea, sore mouth, tiredness, hair loss, taste changes, sun sensitivity, skin changes, pain in joints, watery or dry eyes, flu-like symptoms, diarrhoea, constipation, nail changes,  bruising and bleeding, anaemia, risk of infection and changes to the way the heart works. Today my eyes were watery on and off, forcing me to abandon my contacts and go with glasses. And my nose is a bit runny. I still think I'm doing well to have only suffered a few from that extensive list so far. I do have to be careful this week as this is when my white blood cell count is at its lowest.

Today I was thankful for my wonderful husband. He sorted the kids while i went for an early-morning walk with mt neighbor, Kate. He got us to Remie's EEG appointment on the other side of the city (will have results later this week) and negotiated my failure to bring the directional paperwork with minimal fuss. He chauffeured me to the mall and helped finish the Xmas shopping. He told me I looked beautiful even with my wild hair that I'm not supposed to wash often, brush or dry if i want to try to keep it. He brought in all the gifts and hid them after helping to clean up dinner. I feel very lucky to have him in my life.

Tuesday 3 December 2013

Day 84: A two coffee day

This morning I enjoyed my first full coffee since my treatment last week. Very exciting!

While the kids were at before-school French  I had  the most beautiful run/walk along the beach this morning. The sun was shining, the breeze was blowing and the temperature was just right. What a great way to start the day.

I went to the final session of the Early Breast Cancer seminar series where the topic was "Post treatment communication and issues". I didn't find it to be the most helpful session, I think because my perspective on this experience is a bit different. The presentation and discussion touched on possible depression after holding it together to get through treatment (I feel like I experienced that in my divorce), dealing with a changed sense of identity (I feel like I'm still doing that after my hip replacement and loss of running) and trying to sort out a new path (I have been grappling with that since having kids and staying home). I did take away the likelihood that it'll take at least 12 month post-treatment to get back to feeling like I did before diagnosis. That means I should be in good form for my 50th.

I enjoyed my second coffee this afternoon with Nadia and Chrlotte but am sad to report that a glass of wine at dinner didn't interest me. At least my nausea is gone, I dont have mouth sores and I am staying up past 9.30 tonight. I tell you, it's all in your perspective.

Monday 2 December 2013

Day 83: "Look Good, Feel Better"

Today I went to a "Look Good, Feel Better" workshop, which is a free community service program dedicated to helping cancer patients manage the appearance-related side effects resulting from cancer treatment. I went up north on the peninsula to Mona Vale public hospital (opposite direction from where I'm having my treatment)  at Gail's suggestion (she was impressed with Patsy, the group leader, and the morning tea). It was a lovely day so I put Errol's top down and enjoyed the drive.

There were 5 of us there, ranging in age from late-teens to 50s. There were 6 volunteers so we each had someone who worked with us individually. I learned more about make up today than I ever have before! It was a light-hearted affair with some very helpful tips (such as how to make your eyes loook relatively normal when your eyelashes fall out). I can't imagine that I'll make that much effort on a daily basis, but then again, being bald might make me change my tune.

I was disappointed that "the wig lady" didn't make it as I was hoping for some scarf-tying tips and a look at some turbans. Patsy did her best to offer some ideas and tips which were great starting points.
The morning tea nearly made up for the missed presenter.

The very exciting part of the day was that I made it to the kids' school dance concert this evening. It wasn't the same without the smuggled wine and snacks, but I was still very pleased to have been able to participate.

Sunday 1 December 2013

Day 82: Overdone

I started the day feeling pretty good and was even excited to have half a coffee. In retrospect I can say that I felt like I was somewhat in a different dimension. Despite that, I am fairly annoyed that 3 hours on the beach watching kids and socialising at Nippers (I only just managed a dip myself and did stay mostly sun-sensibly covered up in long-sleeves and a hat) left me feeling the need for a rest. Add to that a lovely 2 hour visit and lunch from some friends and I was wiped out for the rest of the day.

It appears that I do need to scale back my activities and expectations. Hopefully my energy will increase in the coming 2 weeks as I'm thinking that it's really bizarre to be going to bed earlier than many of my friends' kids. I'll stop my complaining and be happy if this is as bad as it gets (as my tongue is feeling a bit funny...).

Saturday 30 November 2013

Day 81: Improvements

I feel like the past few days have been trending positive: the headache has mostly gone and the nausea is very low-grade.  It's the exhaustion that's continuing. Having been in bed by 8p the past few nights, tonight's 9-ish feels late. I've also had a few daytime sleeps to keep me going. I'm hoping the tiredness decreases over the next week; I can't imagine what it's going to be like next April!

I woke up feeling great so had a nice walk along the beach to meet Rach for brekkie. I managed to get through the kids' swim club and lunch before I needed a nap. With Alex at his dance concert day, Remie at a birthday party and Nick running errands I had the perfect house for a snooze. 

Nick and I picked up Remie from her birthday party and went to Alex's 4.30p dance concert. I was very happy to be there as my atttendance had been uncertain. After dinner at the RSL where the concert was, it was home and bed for the kids, and now for me. At least Nick has his boat and desk to finish so he won't be too bored for awhile. 

Friday 29 November 2013

Day 80: Upright

I spent most of the day upright, which felt good after yesterday. I woke up with a much happier head, drank the bottle of water that was by my bed and felt a bit more alive.

Nick dropped off my Honda for a service and inspection, and I managed to drive Errol to get him while the kids were at home with their yoga teacher. I did feel a bit like I was driving in a video game, but I paid close attention. Nick took the kids to school while I watched the French news (pity most of it was lost on me), then Mel, my friend and naturopath, came by with a large jar of what she called "witches' brew".  It tastes like "dirt with cinnamon", as she said.

After Kylie's visit and gift of veggie juice, it was lunch, followed by picking up Alex for speech therapy. He and I got his Secret Santa gift and a pressie for Remie's birthday party tomorrow before he went in with Robynann. I sat at the coffee shop across the street chatting with Kim, who happened to be there, and drinking a nice concoction courtesy of Nick, the barista.

Nick came down and we took the kids to pick up my car.  I dropped the boys at hip hop and headed home. I flopped on the couch with Remie feeling very tired.

After an early dinner, kids to bed and a quick phone chat, I am ready for bed. I feel ok but exhausted. I rinsed my mouth 5 times today and drank lots of water. I ate fairly healthy food (ok, I did have a tiny slice of pumpkin pie to celebrate Thanksgiving). Fingers crossed tomorrow is ok.

Thursday 28 November 2013

Day 79: A whopper of a hangover

I woke up about midnight with a terrible headache and went straight back to sleep thinking that was the best cure. Apparently it wasn't because it was even worse at 6.15a and my tummy was on a rollercoaster. I was feeling very fragile when Remie came in at 6.30. Nick whisked the kids away but Remie came back and read me a whole Billie B. Brown chapter book while Nick had a shower and Alex brought me a big glass of water. They all went down for brekkie and I asked Nick to call the chemo nurses to see if there was anything I could do about the headache. He came up a bit later telling me to drink lots of water and that he'd pick up some tablets at the chemist.

I got out of bed at 9.30a when Nick came back. A shower, a tablet and some brekkie helped me feel somewhat human, but I went back to bed within the hour. I got up for a cuppa and chat with Sue, then went back to bed. I managed to get up at about 1.15p to eat lunch and have a visit with Libby who'd popped by.

I was feeling passable enough by then to go with Nick to get the kids and take them to their swim lessons. As it was a gloriously sunny and warm day, I got in the pool myself and swam 200m with fins. Refreshing.  And tiring.

When we got home I left them to dinner and went back to bed. I gave Remie a new Billie B. Brown book for being so helpful this week and she came in and read it to me. Once she was in bed, Nick and I had a quick bite and watched the news with Alex. He was in bed about 7.30p and I followed shortly thereafter, turning off my light at 7.47p. That's early, even for me, but tough times require tough measures.

Wednesday 27 November 2013

Day 78: I'm still here

I expected that I would be writhing on the floor or hunched over the toilet or crying out in pain. Happily, that has not eventuated - yet. It's only been 32 hours so it's still early days, but thankfully I feel ok: well enough to have had a steak, baked potato and salad for dinner (we'll see how that plays out in the next 24 hours...).

I slept great for about 4 hours last night then was up and down every 1-2 hours. Remie came in at 4a; I walked her back to her bed and awoke in mine at 6.15. I was slow on the uptake to start with some queasiness and spaciness but got going after a shower and eggs for brekkie. Chris took the kids to tennis so I managed a walk along the beach before meeting Nick at Alex's assembly. Alex was thrilled to have us there.

Nick dropped me at home and went to work. I talked to my mum, pottered around and managed to inject myself with the Nulasta (white blood cell booster) with which I was sent home. Lunch was a few Salada biscuits (Saltines in American) and a beautiful green smoothie courtesy of Steph.  After all that I succumbed to a 2 hour sleep. It was one of those sleeps that is like being deep underwater as getting to the surface is so hard. When I managed to wake up it was slow again.

I got it together by the time Emma brought the kids home. They all mucked about and I watched. I did serve Jenny' beautiful beef burritos for dinner which were gobbled up.

It's now 9.15p and I'll turn the light off shortly. I am very tired, have a slightly unsettled tummy and a bit of a sore head. Not bad given what was pumped into me yesterday. Fingers crossed it doesn't get much worse.

Monday 25 November 2013

Day 77: One down, five to go

I was up nearly every hour last night thanks to the howling wind and all the water I drank after lunch. Ok, there may have been some nerves as well.

The morning was executed with military precision. Remie was an agreeable soldier which was a pleasant surprise. The kids happily ran into Steph's at 7.30a and started playing with R and P.  Time to go. 

Nick and I put Errol's top down despite the cloud because, after all, it is the chemo car and we were off to my first round of chemo. Traffic was bad but we managed to get there a few minutes after 8.30a. 

I was admitted to the chemo cottage and shown to my recliner. A lovely nurse came to put on my cold cap: towels around my shoulders, spray to wet my hair then the cold cap on and the neoprene fastener is place. I was surprised that it was actually bearable. 

Then another lovely nurse came and inserted my cannula. She started the drip with saline then moved on to an anti-nausea. She then showed me all 3 bags of fluid that make up my cocktail and had me confirm my name. Somewhere in there the other nurse came back and gave me a tablet anti-emetic (great word meaning anti-nausea). 

Then the bags began. First up was 5FU, the little clear one. That was fine but I was instructed to suck ice chips during that infusion to try to stave off the likely mouth sores. Then came the little red bag that looked like, and had the consistency of, kids' cherry cough syrup. That was the epirubicin.  It's the one that can weaken my heart muscle (!) and also turns my wee red until it is out of my body, which will be a good gauge of how things are going. Finally came the cyclophosphamide, a much bigger bag containing a clear and cold liquid. I needed a thrird blanket for that one. 

The whole IV process took about 90 minutes. I had to wear the cold cap for an our before and an hour after, so we were able to head home about 12.45p.  I was graced with some lovely visitors: Deb brought Nick a coffee, Gail popped in on her way to radiotherapy, Mel's mum (whom I'd never met before), Val, popped in to say hello as her husband was at an appointment, and Ruth came in on her way to work. They were all wonderful company.

Nick and I managed lunch at a local cafe as the weather turned better. Sue even popped by for a coffee with Rose (yellow lab) and some scarves she purchased last week in NYC.

So I am home and feeling ok at 6.30p. I am spaced out, tired and a bit nauseous. I am doing my mouth care wash and drinking water. I can only wait and see from now. 

Day 76: The end of the love affair

I've been swearing I was going to end it. I've tried on and off to cut contact. It's worked for short periods of time, when other things have held my interest or when I've been able to be strong, but it never lasts. I promised myself today was my last big fling and tomorrow I will make a fresh start.

But the champagne at lunch was too enjoyable and thankfully I know that the end of my 75 day affair with alcohol is only temporary. I will endeavour to reduce my consumption (now that all the good bottles are gone from our cellar) as it is advisable as part of my treatment and after.

My "pre-chemo lunch" at Manly Wine was the perfect way to prevent me from worrying about something I can't control and will happen regardless. My fabulous friends who joined me were upbeat, entertaining and so very thoughtful. Thanks to Steph for taking care of the money, Emma for taking one one picture of the day, Jo for the divine hats, Ing for the nail polish, Kay for the book and handbag-sized selection of vodkas, Kim for the trilby, Mel for driving all my stuff home and everyone else for the company. I hope to be able to do another one in 3 weeks.

I am feeling relatively at peace with the next phase of my journey to wellness. Talking with the Breastcare nurse before lunch put my mind at ease. Apparently I will be given all sorts of info and meds tomorrow which will address my concerns. And it will all be in writing. Whew.

I did ask about my 75 day lead up to starting chemo. Claire told me that all sorts of things can extend the schedule (availability of surgeon/oncologist, need for additional tests, family needs). That explains it. She said that they aim to start treatment within 3 months of diagnosis. As I've been told before: cancer is not (normally) a medical emergency but a treatable disease. Given that, I say bring on the toxic cocktail bearing the guys in white to fight those evil cancer cells!

Sunday 24 November 2013

Day 75: All good things must come to an end

After a morning of bike riding and swimming we packed up and headed home. It wasn't just the leaving that was sad; it is what lies ahead that is sad. 

On the drive back my thoughts began shifting gears. I find myself yet again looking over the canyon and not knowing how I'm going to go getting to the other side.  I'm not really worried about starting this next phase of my journey. I can't even say that I'm anxious.  I'm starting to think pragmatically as it is fast approaching: I need to confirm that I'm due in at 8.30a on Tuesday. I wonder how much the cold cap is going to bother me and whether it will be worth it. I can only hope that my veins are robust and the IV lines are fine. I am curious as to what scripts will I be sent home with.  Will I really need a white blood cell booster injection the day after chemo? What signs do I need to look for to know that my reaction is really bad? I need to confirm who and what number I would call for advice.  I need to understand when I would need to go to the emergency room. And we need to have a plan in place for who would come look after the kids if I had to go in the middle of the night. 

And there are less health-threatening questions: Will I make it to the assembly on Wednesday that Alex's class is presenting? Will I be able to attend his hip hop concert on Saturday afternoon? What about the school dance concert Monday night the 2nd? And Remie's MRI on the 4th?

Who ever called me a Type A or said that I over-analyse things??

Saturday 23 November 2013

Day 74: Sharks, rays and more dolphins

The weather worsened the past few days, as was predicted. We checked out the indoor "Ray and Shark Centre" yesterday morning. It was as cheesy as it sounds but the kids (and Nick) got to stand waist-deep in the tanks (more like pools) with the sharks (all toothless) and rays (all de-barbed) swimming around them and eating prawns and squid my family fed to them on the end of long sticks. I can't divulge the cost of this adventure because it is not believable that we parted with so much cash, but it did kill a few hours on a rainy day.  We managed to pass the rest of the rainy day grabbing lunch, playing UNO and Jenga and even fitting in a swim.

We awoke this morning to sunshine, so Alex and I headed off at 7.15a to the west on the bike path to explore. We had a great 6km return ride, and after brekkie Remie decided she wanted to check it out. We all had another great ride and managed to make it back just before the rain started.

We saw the best lightening storm while we were having lunch. There's nothing like watching a storm roll in and then pass; it's one of nature's wonders.

On the way back from souvenir shopping (Remie got a dolphin thing and Alex got a pelican), as we passed the police station and the school, the  kids started talking about practicing "lock down" at school. Alex had to explain that it was what they "need to do if a bad person comes into school with a gun and tries to kill" them.  I immediately thought that we are approaching the one year anniversary of the Sandy Hook massacre. My plight might be rough, but we are lucky to have our kids.

The sun finally came out so we were able to enjoy an afternoon swim and beach exploration. We even saw another pod of dolphins frolicking right in front of where we're staying. Life is good.

Thursday 21 November 2013

Day 72: Carpe diem and dolphins

We headed out after brekkie for a bike ride along the peaceful bike path with Shoal Bay as our alleged destination. We made it there just fine but had to put the enticement of a stop at a bakery on the way home as an added enticement. I really wanted to climb Tomatee Head and see the gorgeous view east and south, but Nick suggested that the walk and the return ride might be too much for Remie. Rain on my parade.

After raising Remie's bike seat ("Wow, this is so much better"), we had a great ride to the marina, found some scones and a playground and made the unplanned decision (who, me?) to take the ferry across Port Stephens to Tea Gardens for lunch to take advantage of the soon-to-deteriorate weather. The ride was lovely, and we found a great little spot for lunch where the entertainment consisted of  two pelicans that swam alongside the dock waiting for food. The kids thought that was great. 

We were all standing at the bow on the return ferry ride when I looked over the side and spotted a dolphin (I have to say I was really hoping we'd see one). Well, it wasn't just one but at least three and they rode the bow wave for about 20 minutes, jumping out of the water every so often. It was spectacular!  Although I am not superstitious or religious, I remember reading that dolphins are special creatures and harbingers of good things.  With only a few days to go I'm happy to take anything I can get. 

Wednesday 20 November 2013

Day 71: Escape

After seeing Remie's Kindy class do their "Goldilocks and the Three Little Bears" performance at the K-3 assembly, Nick, Alex, Remie and I jumped in the car loaded with bikes, boogie boards and a case of wine (amongst other things) and headed 3 hours north to Port Stephens for 4 (hopefully) relaxing days (yes, the quantity of wine might be overkill but Nick said he couldn't decide). We are staying in an apartment in a lovely resort with a pool right on the water. There is a lovely beach with squeaky sand (Bostonians: think Singing Beach) right across from the bike path. Our apartment is perfect with a sunset view and beautiful large balcony.

I am loving every minute of it - yes, even being able to react to Remie's atrocious over-tired antics. The Jenga game with kids v. mum was hilarious and watching the pelicans land while we were eating dinner was spectacular. It's good to remember how lucky we are to feel good, to have freedom of choice and to be able to share our lives with the people we love.

Tuesday 19 November 2013

Day 70: 7 sleeps until the start of the toxic cocktails

I am ready to start.  I have researched, queried and learned.  I have planned and prepped to the best of my abilities. I have kept up the training for my liver. I have gotten my head in the right space. The sooner i start, the sooner I finish. It's just about time to bring it on.

I do find myself wondering how I've been given my 3 10-day breaks (between diagnosis and surgeon appointment, then first appointment with Dr. Andrew/MRI and surgery and finally the bonus week from surgery to the start of chemo). I must remember to ask.

In the interim, I will go 3 hours north to Port Stephens with my family for some quiet and relaxing time. We are planning to swim and bike, play games and read and hopefully laugh a lot.

I will also get to see Remie's Kindy class lead the K-2 assembly tomorrow morning and perform their version of "Goldilocks". Remie will read her one line as the class MCs the morning's proceedings.

I was able to watch the dress rehearsal of Alex's hip hop concert (full concert on Saturday, 30th November). The boys were awesome!  The four 9-y.o. boys I drove even managed to be quiet for 10 minutes on the way home (read: exhaustion). Will wonders never cease?!

At this morning's session of the Early Breast Cancer  seminar series lots of the women who've already started their treatments were giving me tips (hair, skin, nausea). I felt very supported. Hopefully soon enough I will be able to help others.


Monday 18 November 2013

Day 69: Scans all normal. Full inflation.

I awoke at 5.24a and managed to doze until 5.45a when Remie went to the toilet. I used the opportunity to get dressed and head to the gym. As painful as it was, I knew exercise would make me feel better. I did feel very self-righteous for the rest of the day.

I came home to WWIII between Alex and Remie. Tired and stressed kids are not much fun. I have to say I was happy to get them to school. I survived another Kindy literacy group (I have no idea how those teachers do it!) and managed a few errands before it was time to head to Dr. Andrew.

Alex was keen to come see my inflation and check out the chemo cottage, so I picked him up and off we went. We arrived a bit early so I showed him where my seminars were and then we played Scrabble while we waited.

Dr. Andrew was the most animated I'd seen him. He suggested that we add the 80ml remaining "to save me coming back and forth". Sure. Alex witnessed the whole process and was amazed when I told him I couldn't feel he needle at all. He was a bit stunned at the difference in the two sides ("One is up here and the other hangs down there") but Dr. Andrew assured him that could be fixed with a bit more surgery.

I then asked Dr. Andrew about my scan results and he said they were all normal. Amen. He read me the letter from young Dr. Bill about my hip and all s fine <big sigh of relief>. I mentioned that I am entertaining the idea of going to my 30th Andover (high school) reunion mid-June 2014 and asked if he thought I might be in any shape to do so.  He indicated it might be good if I stayed awhile and then said he'd get me an appointment with a radiation oncologist to plan that phase of my treatment to ideally make the reunion. You have to love a doctor who gets your motivation.

Alex enjoyed his little tour of the chemo cottage. I suspect he will feel better about giving me a kiss goodbye next Tuesday morning. And I have the best t-shirts and bracelets to wear thanks to Mum and Sandra. It'll be like they are with me holding my hands. 

Yes, only 8 more sleeps until the treatment wheels get in motion.  I'm actually looking forward to getting started so I can be finished. Who would've ever thought that?

Day 68: Nearing the end of the celebrations

It was blissful to wake up at 7a to no children! Rach and I were the only ones who stayed at the Shangri La, so we had a ver peaceful morning rehydrating, reading trashy mags, swimming and indulging in a brekkie that included pastries.

We got home around 11a to Netty and Remie playing Go Fish. The day was very low key as Remie as still not 100% and the boys arrived home about noon exhausted with a story to tell of the ship nearly being hijacked (all true).

The evening saw Nick and I head out for one last celebration: Nadia's birthday. Despite my tiredness, I knew we'd have a great night once we got out. It started with a Hendrick's cocktail, so how cpuld it be bad? The service, food, drink and company were great, so I thank Nadia for giving us a great reason to cap off our early "silly season".

Day 67: Clarity and a girls' party

When Remie came into bed at something like 2a with a mild fever, her behaviour of the previous days became clear.  She was up again at 5a then 7a for the day. Poor lethargic monkey ;-(

I headed out at 7.15a for a swim with Rach and Jen. The road was closed due to the rain so I had to detour, which simply meant a longer ride in the convertible with the top down. My swim was possibly the slowest ever on record as I adapted to the tightness in my chest (thankfully I didn't sink!).

Remie spent most of the day on the couch in front of the tele. Alex and Nick were getting ready for their overnight on the James Craig tall ship with their Cubs and Scouts group. I was a bit worried about heading into the city for the night with some girlfriends as planned and leaving Remie with Netty (although Netty is undoubtedly more qualified than I in an situation involving children).

Netty put my fears to rest upon her arrival and sent me off with Rach. We picked up Mel and Sue along the way, enjoying the freedom of the roofless car. WeAfter a coffee at the Club Lounge on arrival we settled into our gorgeous suite with views of the Harbour Bridge and Opera House. Deb and Roz arrived when we were cracking open our first bottle of champagne.

The night was absolutely hilarious thanks to the company and the dumping rain. I can't say that I've ever been in a restaurant where I've had to use my umbrella to keep dry, but there's always a first. Thanks to our indomitable senses of humour a very memorable night was had by all. Yet again I am thankful for the support and hilarity of my friends!

Friday 15 November 2013

Day 66: Settling.. and the chemo car and lightning

I woke up cranky. My kids were up at 4.50a and 5.20a. They tried to be quiet by my mother's ear heard them. So at 6.10a I got up, put on my kit and headed out. Yes, I'm not supposed to run but my waddle in the sunshine was good. It didn't prevent me from yelling at Remie for her nastiness and disruption, bit it could've been worse.

Thankfully my darling neighbour, Reid (age 4), was a total delight while I minded him for an hour. A lovely visit from Nadia helped perk my spirits. And my massage from Renee helped with the attitude readjustment.

Nick showed up with the beautiful chemo car (2008 VW Eos black with tan leather interior) as the  kids were having dinner and the rain started. When Emma arrived and the kids were in front of the tele post-shower Nick and I had a lovely drive and visit to Rach and Fred to "pick up the Cubs shirts".

Dinner with Joan and Jonesy at Little Manly was fabulous. The food and service were great (thanks Stuart and Camille) and the lightening storm complete with fireworks (re-opening of Watsons Bay - or something close) was spectacular! Pity Remie was awake when we got home (after night terrors at 8p and 9p)...

Thursday 14 November 2013

Day 65: New hair

I went into the city today to find wig options. Just so you know, I was pretty much against he whole concept initially; it was Remie saying that she thought I needed one that made me more open to the idea. So I was accompanied by my friend Mandy, who went down this path 5 years ago (and she is very well now!), and Chris, Remie's school bestie's mum who took me to hospital for my surgery. We picked up Remie from school and zoomed off to the shop, expecting a light and party-like atmosphere (after all, we were bringing a bottle of Piper, a platter of sushi and a plate of desserts!).

We arrived to an environment that was very different. The ladies in the shop, Roz and Cheryl, were not very excited about the size of our group (and became less so with the arrivals of Sue, Crystal and Kylie). They were also not so keen on our approach of trying on all different types of wigs or of taking pictures ("so we didn't go away and copy the styles"). The party was definitely going to have to happen elsewhere as this was all business. 

As I said to Nick over dinner, this is the first time in the process since my biopsy over 2 months ago that I wasn't treated with brilliant compassion. I think I could have been very depressed with the whole almost clinical-like experience if I were traumatised about losing my hair.  I wonder if the other shops are different?

In any case, I did get to try on a few, and managed to leave with one that looks very similar to my current style. I also took away a short red bob (I promise to post it soon), my first bamboo beanie in a beautiful green courtesy of Kylie and a brimmed ball cap for the sun. At least I now have options. And we did have a lovely picnic in Hyde Park. 

Wednesday 13 November 2013

Day 64: Medical claims

Today I spent 30 minutes photocopying the health care claims I'd spent 4+ hours pulling together on Monday. Ok, they spanned the past 2 years, so it was a pretty big task. Then I went to the post office and spent another 10 or so minutes mailing the whole thick envelope. This is after swinging by Medicare (for you Americans in the throes of the Obamacare debate, this is our public health care system that gave me back a minimum of $3,500 for the births of each of my children and covered 50% of my surgeon's bills plus the entire costs of my hip and boob prostheses) last week and spending about 30 minutes submitting claims to them first. Man, this is quite the administrative undertaking. I did manage to get the letter from my oncologist for tomorrow's wig shopping that will mean that my purchases will be covered to some degree. Every little bit counts!

Tuesday 12 November 2013

Day 63: Reconstruction options and models

I woke up this morning feeling very tired again, all my own doing. Nick and I were fortunate enough last night to partake in the generosity of friends who had organised a degustation dinner in the wine cellar of the Royal Sydney Yacht Club.  Ruth and Trent were fabulous hosts and the night was a rollicking event (I do hope Daryl didn't get lost on his walk home) fuelled by matching wines to the 7 courses.

The highlight of today was week 3 in the Mater's Early Breast Cancer Seminar Series on the topic of surgery and reconstruction. Plastic and reconstructive surgeon Dr Andrew P spoke on autologous (using one's own tissue) options for reconstruction. I learned that I could have a tummy tuck and use the fat to rebuild my breast without having to lose my tummy muscle in the process. If one doesn't ave enough tummy fat, tissue from the upper thigh/lower buttock fold an be used instead. And, if that fails, the lat muscle can be removed and recruited into the breast. Fascinating.

After the presentation, 6 woman modelled their chosen options, giving us a better picture of the possible results. They were at different points in their recoveries, ranging from 10 weeks to 3 years. The same procedure could have different outcomes based on body shape. Again, fascinating.

I'm still thinking of sticking with an implant and a lift on the remaining side. I would consider massive surgery if I'd had a double mastectomy but am happy to keep it minimal given my lopsidedness. Plus, I am holding out the hope of running without a jog bra and wearing halter neck tops. As with all of this, I'd be happy to revisit my decision if my situation were to change.

Sunday 10 November 2013

Day 61: What would I do if I knew?

I find myself again wondering "What would I do if I knew that I were going do die on xx date"? Don't worry, I'm not coming at this from a morbid angle. I know that in 17 days from now, on November 26th, I'm going to start my 18 weeks of 6 cycles of chemo. I have a strong suspicion that, while my life is unlikely to end, it's quality is going to decrease somewhat.

So what am I doing with that knowledge? Going to try to improve something in the world? No. Trying to get caught up in my admin? A bit.  Setting things up for my kids and my family? As much as possible. But what am I really doing with the time?? Trying to fit in all the social events that would normally happen between now and the end of the year! And I am totally exhausted (hence no posts for the past few days). So now you know that I am still the same.

I slept on and off on Thursday night but had no more sickness. Perhaps the contrast drink. In any case, my tummy was tender all Friday. I made a valiant effort to drink and eat at Nick's work Xmas party but I ended up on water and was very disappointed in myself. The party was the best yet since 2003: the cafe at the zoo had great views, the zoo keepers bringing the 4 year old crocodile and big snake around for petting were great, Amber's decorations and music were perfect and Nick and Sonny did their best speeches to date. I enjoyed it but wasn't quite festive.

Saturday's swim club saw Remie nail her 25 m freestyle and Alex swim his first IM ever. Lunch at Sue and Jono's was great fun. Pity Fred slept through t but hope he's on the mend. I was proud to have managed to sneak in the birthday cake unbeknownst to Sue.

Dinner at Ormeggio with our ante-natal mates was entertaining as usual. I texted beforehand to warn them of my tattoos and had a great time as they tried to work out what I'd had done. I managed to rise to the festivities, partaking in the degustation menu with matching wines. Roz swooned over the chef, Allessandro, while Deb took photographic evidence that she had indeed met him. Hilarious.

Today was a much needed mellow day. The boys took off for a Cubs "flying day" (but the Cessna flights sadly didn't happen due to poor weather) and Remie and I stayed in bed until an unheard of 8a (I now get why loads of parents love TV: she watched Octonauts episodes on my iPad while I dozed). We had great mummy/Remie time (which even involved sorting out the toys in her room).

Now it's time to sleep and rejuvenate. I realised last night that I'm likely to lose my hair in about 4 weeks. That's depressing when I'm tired. So what am i doing with that knowledge? I'm going wig shopping with Remie and some of my friends on Thursday; I'm thinking of exploring a short red bob. I figure I have to look at it as an opportunity to play around with my image to make it entertaining. After all, it is only temporary.






Thursday 7 November 2013

Day 58: Final pre-chemo scans. And possible flu.

I just got my first sense of what I'm in for starting in 19 days and I don't like it. I know that I've mostly had a walk in the park so far and I wasn't prepared for any complications. At least not yet.

 I was at the hospital most of the day for my heart scan (as one of the meds in my triple cocktail that goes for 3 cycles can waken the heart muscle) and my brain, chest and abdomen scan with the bonus addition of a quick look at my squeaky titanium and ceramic hip to make sure it hasn't cracked (!).  I had 2 injections for the heart scan and 1 for the full body scan. As my injections have to be done in my right arm forever more since, w/o 24 lymph nodes in my left armpit, I'm now prone to lymphoedema, my right inner elbow is a bit tender. I also had to drink a special "barium something" drink at 20 minute intervals for the hour prior to the scan. I was happy to have Nick there for the hour and a half between the two (he'd just flown in from Singapore at 9a and swung by en route to work) for a debrief and wonderfully distracting company.

On my way home I had a yummy high tea lunch with Sue LP. It was a lovely treat after the scans and a great catch up. I sailed through the rest of the afternoon routine of after school swimming and getting another lovely friend-provided dinner ready.

All was fine until about 5.15p when I felt like I'd been suddenly run down by a truck: nausea, a headache and chills came from nowhere! I passed kids' dinner duties on to Nick, sat outside with a spew bucket for a bit, had a little episode out the other end and tucked into Alex's bad while he read me 2 chapters of The Famous Five. I managed to get up and move to the couch for the news and a bit of inane tele (you know I must be unwell when I do that!). After another bottom incident at 8p, I headed up to bed. I was ready to jump in to bed after brushing my teeth, washing my face and tending to my eyebrows (man do they hurt) when I raced to the bathroom in just enough time to hurl into the toilet.  I can't remember the last time I had this. Ugh. I'm crossing my fingers that its a 24 hour thing  (or less) or maybe food poisoning as it's Nick's company Xmas party tomorrow night. I swear I'll seriously appreciate feeling well whenever I do.

Wednesday 6 November 2013

Day 57: Awards, eyebrows and epilepsy

It was a very exciting morning as we knew Remie was going to receive her second merit awards of the year (all kids get 2 and her teacher fit hers in before I start chemo).  She stood up proudly on the stage of the K-2 assembly and received her award for "Enthusiastically approaching new things and being a great role model in class".  She may drive me nuts, but she is destined to make her mark on the world.

From that proud parent moment I went for my first ever tattoo. Yes, you read that correctly. I took some advice and had my eyebrows tattooed on. "Cosmetic tattooing", it is called. It also covers post- mastectomy nipples for those who weren't able to retain theirs. Jill was a fabulous woman with a great attitude (and boy did she look good as well). She inflicted much pain on me (ok, I think I am a wuss) and left me with dark caterpillars above my eyes (I am assured by many that they will fade - but unlikely before Nick's company Xmas party this Friday...). I am holding out hope that I made the right decision to prepare for the loss of my eyebrows as there is no way I would have done this otherwise.

I then raced to pick up Remie and take her to the doctor to get the results from her sleep study. Dr. Hugh greeted us and asked how we were. I told him about Remie's recent run of night terrors and sleepwalking as well as my diagnosis. He then ran me through the sleep results, which ruled out sleep apnea and shaky leg syndrome and did not suggest the need for removal of tonsils or adenoids. He said that her EEG (brain wave measurement) was abnormal and showed a "spike and ave" pattern characteristic of epilepsy, specifically benign focal childhood epilepsy. He said that night terrors and sleepwalking could be part of this and we could medicate if we so choose if this were indeed the diagnosis. He said this usually passes by puberty and rarely needs to be medicated unless it causes great disturbance. wrote a referral for a full EEG but wasn't too worried and said there was no urgency.

Just after 8p tonight Remie had a massive night terror, complete with sleepwalking and big jerking of her right leg and hip possibly consistent with a seizure. That's the emotional straw that broke the camel's back today. Thankfully tomorrow is another day. And thankfully my fridge runneth over courtesy of my wonderful friends. I don't know where I'd be without you.

Tuesday 5 November 2013

Day 56: There's no such thing as an "all clear"

Yes, that was my "cancer 101" key learning module for the day. It makes perfect sense once explained but it's still big news. I now understand why, on Day 1, Dr. Karen told me that I was now on a life long cancer management plan.

Dr. Fran presented "Medical Oncology" at today's seminar series at The Mater. She explained what cancer is (rapidly growing cells that don't follow normal cellular development patterns), why people might get it (e.g. having children when over the age of 32 or having no kids at all and/or drinking alcohol amongst others), what can be done about it (treatment types) and what the longer term looks like.

She used the analogy of an airport metal detector to explain what she'd like to see as a "cancer detector".  She then reminded us that no such thing exists now, so there is no way of knowing whether any cancer cells are still alive in a patient once treatment is finished. Bone and body scans only report "problems" (tumours larger than 1 million cells); they don't pick up anything smaller. Heavy stuff.

Before the seminar I went to see Maggie, one of the hospital's physios, to talk about lymphoedema.  She was very helpful and informative and sent me away with a bunch of exercises and general thoughts. Useful, and another life long plan to manage.

Monday 4 November 2013

Day 55: The web of women

I was getting ready to head to the gym at 7.15a after a bit of a lie-in when the doorbell rang. I opened it to find 2 packages. The first one Alex and I opened was from my Aunt Rita, my mum's youngest sister, with whom I haven't been in contact for well over 10 years. She sent me a beautiful "magic lap quilt" with special healing powers. I was so touched I cried.

The second was from my former neighbour and dear friend Laura who is now living back in the UK. In addition to sending two jars of traditional English sweets for the kids, she sourced a framed picture that says: "When life gives you lemons, grab tequila & salt".  I laughed and felt very supported.

The morning was rushed but quieted down after school drop off. Nick and I snuck away for a coffee to catch up before he left for Singapore this afternoon (did I mention that he finally made it back from the US yesterday morning after missing his flight and subsequently Alex's Cubs camp). He's trying to fit as much in as possible before I start chemo on the 26th. Bless him.

I then caught up with a woman I vaguely know from the gym. Gail finished her chemo 3 weeks ago and was happy to share and answer questions. She looked fabulous and had gone though chemo relatively easily. She was very positive, sharing practical tips and suggestions as well her experience. As we were wrapping up, the woman at the table leaned over to tell us she is a breast cancer survivor and wish us all the best for our respective next steps. Lovely.

I got home and booked an appointment to look for a wig, left a message for a woman re: eyebrow and eyelash tattoos and looked into the "Look good, feel better" program.  All I need to do now is get a few head covers.

I then  opened the little packages my mum sent via Nick. Not only did she send the practical items for mouth care (my dad suffered mouth issues when he went through chemo 8 years ago), she sent a breast cancer bracelet with a note telling me that I should wear it to my treatment and it will be like she is there holding my hand. I smiled and just wished I could give her a hug.

The day ended with Kylie dropping by with dinner. Seeing her smiling face made me happy.

I am yet again amazed at and thankful for this web of women who are helping to hold me up. I feel very lucky and loved.

Sunday 3 November 2013

Day 54: Lopsided

I went to the beach today in a normal bikini, with no padding or extra "filling out" assistance. I didn't want to hassle with my insert or lose it in the surf. I took my dress off and jumped into the waves while Remie didd Nippers. I felt strangely confident despite the unevenness, which is very noticeable to me but likely less so to others. I was more self-conscious of my muffin top and tree-trunk thighs. And all I can say is that my biggest issues are cosmetic and/or surgical, I'll be laughing. Odds are high that the challenges in 4 weeks will be bigger, but I can always remain cautiously hopeful yet pragmatic.

Friday 1 November 2013

Day 52: Almost routine

I got to The Mater, my home away from home, a few minutes before I was due at Nuclear Medicine for my 8.30a injection required for my 11a bone scan. I'd left the kids in the capable hands of their yoga teacher who started Remie's session at 7.30a (While Alex did his homework) and then walked them to school.

After my injection I had a coffee at the cafe, did a few emails, then headed across the road to The Poche Centre to wait for my 9.45a appointment with Dr. Andrew. I found Kathy, who answered some questions I had regarding a reconstruction survey I was asked to do, had a quick chat and finished the survey. As I sat in the waiting room, one of the women from the seminar series came in and sat next to me.  She recognised me and reminded me of her name. We proceeded to talk for the 10 or so minutes until we were both called in. She was one of the 2women from Tuesday who had done the cold cap treatment and retained some hair. Her hair looked better than my first impression on Tuesday so perhaps I will give it some more thought.

Rebecca called me in and asked how I was. I told her very honestly that I am fabulous at the moment because I figure if I say it it might be true. She asked if I had any pain, to which I responded that I only had some mild discomfort. We discussed my head-shaving plans and I told her how Remie is educating her class. She was happy with her examination and suggested we add another 60ml to my expander. She got Dr. Andrew, who thought the whole thing was grand. He had a bit of a laugh when I mused that my hair was likely to come back grey as he is very grey. Why does it always look so good on men but not always so on women? We discussed the final result and he mentioned that there were other options besides implants. When I said I wasn't so keen to use my stomach muscles and risk a hernia, he tapped my stomach and mentioned we could use that. I will have to follow that up as im wondering if it could involve a non-elective tummy tuck ;-)

After the expansion, Rebecca asked me what my bra size was and what I wanted to be at the end of this process. Yes,she seriously asked me to pick my size. Unfortunately is was a no-brainier as I'm used to what I was and lingerie is expensive ;-)

After I finished there I went back across the road to Nuclear Medicine for my bone scan. As I was 20 minutes early, I managed to fit in my blood work before the scan. It was actually quite a relaxing hour lying down and having machines whir around me taking pictures. Now I just have to wait for the results and hope for the best.

The strangest part was that I totally know my way around the hospital and it seemed almost routine to be there. I wonder how I'm going to feel in 5 months after spending even more time there.


Thursday 31 October 2013

Day 51: Cut through

For a very uneventful day, this was incredibly emotionally eventful for 4 reasons (in chronological order):

1. At the end of a tour of a local high school, I was talking to the friend I was with.  I was debating my decision of whether or not to try a cold cap during chemo sessions to attempt to preserve my hair. K simply reminded me that I have a limited amount of energy and asked whether I really want to expend some portion of that energy worrying about my hair. I love those key questions.

2. I emailed another friend who is a make-up artist and asked if she would literally help me put on a brave face when I lose all my hair. Not only did A agree to help, she replied in such a positive and supportive way that I cried.

3. I ran into a friend whose son is in Remie's class. W told me the story of how her son came home the other day and asked if she knew what is going on. He went on to tell her how Remie's mum had her breast taken off because she has cancer. He told her that I had already had lots of needles and tests and had been very brave. He went on to say that I will likely lose all my hair  "but that's ok because hair grows back". Bless Miss C and Remie for helping the class learn so they can help others!

4. A friend came by for dinner and simply shared some deep analysis regarding how far I'd come in 51 days in terms of my fear and acceptance, some reflection on how much capacity the human spirit has for resilience and some good old laughter. R suggested that, depending on how i look at it, this might end up being one of my better, not worse, years. There's food for thought.

Wednesday 30 October 2013

Day 50: Exercise

As we were heading out the door to take Remie to her tennis lesson, one of the physiotherapists at The Mater who deal with lymphoedema, returned my message from yesterday.  I had contacted them as I thought I ought to get some post-op guidance, especially given that I had an axillary clearance (24 lymph nodes removed).  She asked how she could help, so I asked her what I should not be doing in terms of exercise as I was in my gym gear planning to do something more strenuous than walking. She told me to stay away from upper body weights for the next few weeks as well as chest exercises until my expander is fully inflated. She told me to take it easy and remember that I had major surgery 3 weeks ago (I didn't tell her that it wasn't as major as my hip replacement where there were power tools in the operating theatre). That's pretty straight forward and relatively easy to follow. Looks like Crossfit is out for awhile.

Phil, who owns the gym that I go to and creates daily training plans, wrote me a perfect little return-to-fitness board focused on lower body and my friend the spin bike. I had an excellent work out. It was not one of my most hard core efforts, but it was good to get back into it and take another step towards getting stronger and regaining flexibility. I do so hope to be able to continue this during treatment as it is as good for my mind as it is for my body. Fingers crossed...

Tuesday 29 October 2013

Day 49 (Tuesday 29 October): Seminar Series kickoff

The Mater Hospital in North Sydney, where I am getting my treatment, run a 6 week "Seminar Series" on early breast cancer held on Tuesday mornings. The third one of this year started today, and I was there. I thought I should go to see if I could learn anything useful and to see what it would be like to meet others who are currently on similar journeys.

I arrived at the The Poche Centre, centre where my surgeon and oncologist's offices are, and made my way to the conference room. I was greeted by the Cancer Support Officer and saw Claire, the Breastcare nurse. The session started with an overview of support resources.  The clinical psychologist who was there talked about the ways in which she and her team can help. There were 2 cancer survivors who'd volunteered their time to tell us all their stories and provide support. I immediately identified with Gill, who talked about how she approached her treatment with a project management plan and diarised every appointment. I was disappointed when she said that it definitely didn't go according to plan for much of the time.

There were about 20 of us there who were at all different points of post-diagnosis acceptance and treatment. The age range was 28 to mid-60s. Everyone had a similar but different story, and everyone seemed to be coping differently. I learned some practical things like: the scalp cooling is painful and you still lose about 50% of your hair, getting a "port" makes the IV process much easier if finding a vein gets tough and a wig can look fabulous. I found some comfort in knowing that others are going though a similar experience, but I did feel a bit like I did when I was pregnant that each of us have our own journeys. I sense these will be useful sessions as part of the process but it made me remember that this cancer is only part of who I am.

Monday 28 October 2013

Day 48 (Monday 28 October): Night terrors

This is the 7th night out of the past 8 that Remie has been up screaming within the first 2 hours of going to sleep. She wails and shakes and sometimes gets up and walks around. She is always very hot and sweaty. She usually settles down within a few minutes and never remembers it in the morning.

Her sleep study came back ok but her EEG showed a "spike and wave pattern" characteristic of petit mal (absence) seizures. This is unlikely to be causing the night terrors, but is it contributing to them? Is her trainer she wears to teach her how to breathe through her nose causing them? Is she over-stimulated or eating something that's causing the problem? Am I over thinking it?

At least what I'm going through has a pretty clear path from here on and it's happening to me, not my kids.  It's the not knowing and watching my child suffer that's terrible.

PS The chain is hanging up and thankfully it doesn't seem as long as I imagined it would.

Sunday 27 October 2013

Day 47 (Sunday 27th October): The countdown chain

Nick left at noon today for a week in lovely Cedar Rapids, Iowa for management meetings. Best to get that travel in now, we agreed.  He travels frequently enough that it was somewhat routine, but I did have a distraction plan to keep the kids occupied.

We took out construction paper, scissors, a pen a tape and began making our "countdown chain" to the end of my treatment. We dated and colour-coded the days (yellow, blue and green for the next 4 weeks, black for the weeks of chemo, red for radiotherapy, etc.) and got to work. After a few tries, we worked out the production line of me cutting and writing, Alex making the rings and Remie cutting the tape. We discussed what's likely to happen based on the treatment, timing and colours (how I might be feeling). The chain snakes across of 6-sweater dining table 6 times. I suspect it will wrap around the kitchen and dining room. Hopefully it will help make us all feel that there is an end to it.

Day 46: Preparing for a car wreck

During my rest time today I read the literature my oncologist gave me on the drugs that are in the cocktail I'm going to get. I read all the side effects, plus the info from the "chemo cottage" at The Mater Hospital and the information on scalp cooling. Wow. There's a lot to digest.

It's very rare in life to know that you are about to go right into a car wreck. I know that, and I know when it will happen. What I don't know is how my car will hold up, what seat ill be sitting in or from what direction(s) I'll be hit. I've decided that its not worth trying to prepare for so I'll acquire the necessary "first aid kit" items and just wait and see.

Day 46 (Saturday 26th October): Push back

After a busy morning of 7a training with the girls (which had devolved into some brief exercise - walking for me today - followed by a catch up over brekkie) then the kids' swim club then a trip to the mall which included lunch at the sushi train, we got home and I attempted to have a rest. I did this not only because I was a bit tired after sleeping poorly the past few nights but also because I wanted to see if the kids could be relatively quiet and respectful. They never quite mastered it when my hip was painful pre-replacement and I needed to rest.

I'm disappointed to say that they have not improved. Remie was terribly defiant, screaming and stomping and slamming doors. Alex just egged her on. We had a family discussion about how I'm going to need to rest and they are going to have to do better at helping me. We explained that they will get to go on play dates and do lots of fun things but sometimes they'll just have to be home and quiet.  Remie was so unsupportive and selfish that Nick took them out to Bunnings (hardware store) which she hates. I know she is only 6 and we have set things up to contribute to her thinking that the world revolves around her. I fear that this is going to be a huge issue unless we figure out how to pull the team together. Perhaps it will take until the reality of it is in front of them for them to adapt. Fingers crossed...

Friday 25 October 2013

Day 45 (Friday 25 October): Sharing

On Tuesday I borrowed a book from the Manly Library called "My Mum has Breast Cancer".  It was written and illustrated by a 6 year old boy and his mother as a remorse for children. I showed it to Remie, who was very keen to read it, so we sat down together. She asked questions along the way and took it all in.  Afterwards, I asked her if she'd said anything to her friends at school as she is a very gregarious and inclusive friend who would be interested in sharing this new bit of news with her friends. She looked shocked. "I can't, Mummy, because they'll all make fun of me", she said. When I asked her why, she said, "Because breast is a private part and we aren't supposed to talk about those" (apparently one of her friends had laughed at the word when Remie had said it before).  We discussed it and she agreed that I should talk to her teacher and see if we could do something we could work out.

I spoke to Miss C. and she suggested that Remie bring the book in. They read it in class over the past two days, with Remie adding her personal narration of what we've already experienced. Remie seemed happy and said none of the kids laughed.

I was at school pick up today (note to my American friends: we don't have yellow school busses here so parents/carers have to drop off and pick up our kids ourselves) and caught up with some friends on my way to get Remie. We discussed the merits of groovy hats for protecting hairless heads from sunburn. As I made my way across the Kindy area to where Remie's class gets out, a little boy in her class walked by me, pointed at me, and said "You have breast cancer" and kept walking. I guess the book got the point across and helped take the "naughtiness" out of the word breast - at least in this instance.

Thursday 24 October 2013

Day 44 (Thursday 24 October) : Processing

Now that I have a plan it seems a bit easier to process, at least in the big picture. The details remain challenging. I looked at headscarves today and tried to picture one on me. Hmmm. Remie told me the other day that she wants me to have a wig that has long hair, so I looked. Hmmm. I met with Emma, my babysitter/nanny today, and discussed things to get organised before chemo starts and the help I'll need once it starts. Hmmm. I received alerts from Meal Train from all the lovely people who've offered to cook for us. Wow. This is really happening to me.

You'll all be happy to know that I rang the Breastcare nurses and left a message asking when I can start weight-bearing enough on my left arm to start cycling again as walking just isn't cutting it (plus my hip squeaks - seriously). It's time for me to get my heart pumping again and flush out some of the fear, anger and frustration while I can.

Tuesday 22 October 2013

Day 43 (Wednesday, 23 October): My treatment plan

It's 1p and I just got home from my 10.40a appointment with my medical oncologist. She was running late because the breast cancer multi-disciplinary team meeting was a bit heated and ran late.  As I said before, I love the idea of having all those specialists (surgeons, medical oncologists, pathologists, radiation oncologists, Breastcare nurses, etc.) applying their expertise and brains to my "case" (amongst others, of course).  I did forget to ask whether it was my "case" that caused the heated discussion but I suspect that's best left unasked...

The great news is that I really gelled with Dr. Fran.  She, like Dr. Andrew, is pretty straight forward yet compassionate.  She started by asking about my journey and my family, interests, etc.  Then she queried my knowledge of chemotherapy in the big picture and asked what Dr. Andrew and I had discussed.  After getting this picture, she moved on to treatment specifics.
Again, the good news is that I expected what she had to tell me.  The top-level is that, starting on Tuesday, 26th November, I'll have 6 cycles of chemo at 3 week intervals, followed by 3 weeks of recovery, then into 5 weeks of daily radiotherapy (M-F because, as Dr. Fran said, "radiation oncologists have worked out that cancer cells don't grow on the weekends"), followed by hormone blocking drugs (Tamoxifen) for 5 years.

The specifics of my chemo are as follows:- the first 3 cycles will consist of a cocktail of Epirubicin3, cyclophosphamide and 5-fluorouracil (5FU) 
- this will be followed by 3 cycles of docetaxel (Taxotere®) alone.

The side effects can be:
- hair loss
- decreased white blood cell count (I'll need to inject Neulasta, a booster drug, the day after my treatment and be very aware if I have a fever about 38 degrees C)
- nausea (I'll be taking anti-nausea meds)
- interference with the heart muscle's strength (!)

Dr. Fran suggested that I try the "scalp-cooling" to see if I can retain some of my hair for the first few cycles and then I could start the school year next February with a new hair style.  I like her reasoning, if nothing else than for Remie's peace of mind.

And for all to whom it matters, my cancer is a Stage III (T3, N1, M0 - with the latter to be hopefully confirmed after my full body scans).

I have to get the full body scans and blood tests before I start.  Thankfully I have another 5 weeks to do so and get my strength back and prepare.  For all of you who are local, I'll be in touch soon with requests for help (apparently the week following treatment is going to be the toughest).  The plan is to expect the worst and hope for the best!

At least now I know that my days will number over 250 as of 6th May 2014 when this treatment plan will be behind me and I have to set my sights on ticking away at that.  One day at a time.