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.