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.

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...

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.

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.

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...

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.

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.

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.

Day 42 (Tuesday 22 October): Pause

The house guests left this morning. My diary was fairly free. I used a few quiet moments after dropping off the kids to get caught up on admin. Whew. Other than that it felt like a day of calm before the storm of my oncologist appoitment tomorrow and the ensuing information to digest.

Continued thanks to all for your support. Bozo, Lis, Carol, V and Cren: thanks so much for your messages and the pearls of wisdom (and jokes) they contain. Sandra, your humour keeps me going. Sandy, you know I appreciate all you and Mig do for all of us; thanks for the chat today.  And thanks to my mother for preparing a little "care package" with all sorts of essentials to help me through treatment.

Emma, it was great to finally see you. Thanks so much for the idea of Champagne brunches"in between chemo cycles as something to look forward to (more on this later).  Kylie, thanks for your time and listening today and for finding the kids' book about breast cancer at the library; Remie loved it.  Sue, you are a legend for setting up the Meal Train. I'll post the link when I can find it so those who are keen to cook can book it in ;-). Louise, you helped infinitely in getting my head to the right place for tomorrow. And finally, my dearest Nick, I am eternally grateful for all that you do, even though I might act otherwise.

I'm optimistic that a good night's sleep will enable me to be as strong and brave as possible for this next step. One day at a time.

Day 41 (Monday 21 October): Reality

I just snapped at my father-in-law. He and my mother-in-law have been here since the day after I my surgery "holding down the fort". They have cooked and cleaned, looked after the kids and did projects around the house bin short they have been phenomenally helpful and we are lucky to have their support.

The end of dinner discussion moved to FIL's 70th next April and the possible party. I said with regret that I was likely to still be in treatment given the 6 cycles  of chemo at 3 week intervals followed by 6 weeks of daily radiotherapy, all starting roughly 4 weeks from now. He joked and told me to tell the person organising it that it would have to wait: a bit of a laugh in the normal world. I snapped, saying i didnt want to talk about it right now. He apologised Sincerely. I am sorry I reacted badly, but this is my reality.

I had lunch today with a friend I haven't seen in over a year. Our kindergarteners,were at the same pre-school and did ballet together for awhile. I learned from a mutual friend that K is on the same path I am travelling, just 2 weeks ahead of me - plus we both are seeing the same surgeon. Bizarre small world. We exchanged stories, hada laugh, talked details and pledged to try to sync our chemo schedules and stay in contact.

It was very strange to meet with someone I know who is going through this. I've considered it my cross to bear and I think I may now have an idea as to how others are taking in my news.

Day 40 (Sunday 20 October): Numbers

I can't believe it's been 40 days (nearly a month and a half!) since Dr. Karen told me I have cancer. Noah survived the flood in the same amount of time. It seems like years ago given everything that's happened. I found myself wondering what the final count will be until I get beyond "it".

I pulled together all my pathology and all my invoices earlier today. I thought I should get started creating a useable file before it got too out of hand. I was curious to learn that my total medical costs to date, before Medicare and private Heath fund payments, is just over $8,000, making it a daily average of $200. If I weren't sick before totalling that I now have real reason to be! I wonder what that daily average will be as I near the end of the journey. I best submit my claims to date soon.

Day 39 (Saturday 19 October): Preparation and celebration

As I headed out on my Saturday early morning "training with the girls" (which this week consisted of walking down to and along the beach to meet Rach and Jen for brekkie before the kids' swim club), I thought about how my training for road races, triathlons and other competitions has prepared me for this challenge. I didn't know if I could finish my first half-marathon then a full marathon then not drown in the swim leg of a tri. I was terrified when I climbed Mt. Shasta and still panic every time I do an ocean swim. But I do it. I just breathe deeply, think positively, ignore the pain to the best of my abilities and rely on my friends. I'm going to use the same strategy this time ;-)

We had a lovely evening down the street at Little Manly beach and kiosk for dinner with the families of the 3 girls with whom I train. This is a key part of our extended family in Sydney as the kids have known each other for as long as they can remember. We made it Alex's birthday celebration, so the grown ups drank too much champagne (and wine and beer) and the kids had a ball roving the beach with sparklers until dark. The cake made by our fabulous neighbours (with Lego figurine topers in fondant made by a pre-school mum) was divine. It was a great night shared with friends, which really is one of the things that makes life grand. 

Day 38:(Friday 18 October): Uplifting

I had my post-op appointment with Dr. Andrew today.  Rebecca took me in and started the discussion. As she read through my pathology and got to the actual surgery and positive read on my sentinel lymph node, she summed up our experience by saying that "I threw them curve balls at every step".  Have I not said that it is all about one's perspective?!

I essentially learned nothing much new about my treatment in terms of the practical details. I did get a bit more information on why I need chemo (lymphatic invasion, type 2 and 3 tumours, my youthful age) and radiotherapy (breast was filled with both DCIS and invasive cancer, some close to the skin, so it's a bit of insurance). I will need radio on the glands at the base of my neck, it sounds like, as it seems my breast drained that way as well. Go figure.

I asked Rebecca why they didn't given a stage rating to my cancer (generallynused for prognosis and treatment). After asking me if I really wanted one, she said they need additional tests that my medical oncologist was likely to order, so she wrote them (bone and full body). Apparently the 2 tests will take all day; I am quickly starting to understand why people have said that they are so sorry I have to go through this.

I have an appointment with Dr. Fran, my medical oncologist, next Wednesday morning, in which I suspect we'll discuss dates, frequency and cocktail for my chemo. (I'm angling for 18th Nov start to be ok for the kids' dance concerts and then for Xmas). I

I am healing well and everything looks good. The most surprising part of my appoitment was an "inflation": Dr. Andrew filled a syringe with 60ml of saline and injected it into my expander and my boob got 60ml bigger. Now the new one sits up high and is getting perky while the old one hangs low and is definitely droopy. Bizarre. 

Finally, the convertible inspection was a bit of a bust as Nick says it'll need lots of repairs so I should spend $10k more to get something more reliable and I'd rather spend that money on a holiday/girls' weekend. I'm sure this is a continuing saga...

Day 37 (Thursday 17 October): A reason to be home

Happy 9th birthday to my beautiful boy! It's funny to think that 9 years ago I thought that having a caesarean after 16 hours in labour was hard work. I swear it is all in one's perspective.

I am so pleased to have been able to be home and feeling good to celebrate Alex's birthday. It started with pressies first up then Nana's lemon cake after brekkie. A celebratory dinner out was capped with ice cream sundaes. Lots of cuddles before bed ended a great day.

I also had a fabulous visit from a lingerie and breast prosthesis woman who fitted me in my own home. She was positive and respectful and shared some wonderfully uplifting (pun intended) stories. It was a fabulous experience and I now have a fake booby that balances me out plus some bras and singlets with pockets for my insert. She also tells me i can pop my insert into my normal swimmers so  I'm loking forward to getting back to laps in 5 weeks. Perhaps.it wasn't the most glamourous of consultations but I do feel more confident about my imbalance.

In preparation for my jappointment with Dr.Andrew tomorrow, I just went through the "Understanding Your Pathology" chapter of the "Breast Cancer: Taking Control" book at the Breastcare nurse gave me.  There is a reason I'm not in medicine. I at least feel like I know what to ask but have to go to sleep now as I am exhausted yet again.

Day 36 (Wednesday 16 October): Back to the routine

It was so nice to wake up in my own bed. I was so pleased when Remie came in at 6.30a for a cuddle. Getting organised and going was a bit slow, but at least my pain is nearly non-existent. After brekkie it was off to Remie's tennis lesson then over to school for the K-3 assembly to see Alex get an award to "consistent results in maths". He was so proud and excited that Nick, his patents and I were all there. Cute.

I then had a lovely and long overdue chat with Belinda after grabbing coffees and walking the block to the beach where we sat on the wall watching the surf. I really appreciated having the freedom and strength to be able to do that.

The reast of the day was perfectly mundane and normal. I find it amazing that despite having been pulled out of the day-to-day 18 months ago for my hip replacement (and months before in the lead up), I still quickly took for granted being able to do the daily things that drive most of us mad. I will admit that Remie's tantrums all afternoon still drove me mad, but it was nice to be part of it all (or maybe not...).  In 2 more days I think I enter the world of numbers and percentages (survival rates, chances of recurrence, number of weeks until treatment starts, etc.) so here is good now.

I am now exhausted. I was thinking of reading a bit about chemo to be able to prepare myself, but as the thought seems daunting, I'm just going to turn out the light and go to sleep. Good night.

Day 35 (Tuesday 15 October): Going home with good news

I'm enjoying my last "breakfast in bed" and looking forward to "breaking out" in an hour or so. After a good day yesterday of visits and information from the Breastcare nurse and a pretty good sleep I'm ready to rejoin the world.

Dr. Andrew came in a half hour ago and shared my top-level pathology: all 15cm of my left breast contained DCIS (pre-cancerous) as well as multiple Grade 3 (aggressive and rapidly dividing)  invasive cancerous tumours, the largest of which was 2cm. Cancerous cells were found in 2 (only 2!) lymph nodes. Apparently it would not have been surprising to have seen it in 10 lymph modes. Finally, the receptors are hormone-positive but not HER2 positive.

So what does that all mean and why is it good news to me? First off, I'm very relieved to hear that it's only in a few lymph nodes as secondary (metastisized) cancer terrifies me. My dad lost his battle to secondary cancer. Secondly, the fact that it's not HER2 positive means that there are more treatment options and it won't have to go on so long. Finally, as either Stage 2 or Stage 3, the survival rates are very high.

What it means is that I'll have chemotherapy, radiotherapy and hormone therapy. I'm ok with that as I've spent the last week getting my head around it. I figure that if it takes chemo to eradicate the Grade 3 cells, then bring it on. I want this disease to go the f*^k away!

I'll see Dr. Andrew on Friday to go into more depth then have an appointment with my medical oncologist, likely to be Dr. Fran.

Now it's time to get my last drain out, shower, pack, pay my bill, head out and go look at a used convertible for my upcoming commute. Onward and upward!

Day 33 (Sunday 13 October): Contact

The world did indeed look rosier when I woke up. Pity It was around 6.40a by a nurse to take my vitals. But then I dozed, appreciating that I could do so undisturbed by children.

After a brekkie of berries (thanks Deb) and a refreshing shower, I waited eagerly to see my family. The kids were very excited to see me and Nick and his mum helped keep them in line. We had a great visit that ended in the requisite kids riding the hospital bed up and down. I even got to see Nick's new car before they headed off to do some shopping with Nana for their birthdays.

The rest of the day was filled with a little rest and uplifting visits from some fabulous people. Our circle of chairs outside in the "Healing Garden" kept getting bigger and bigger (thanks, Jono, for continuing to bring over more chairs). I enjoyed the piccolo and the veggie juice may find myself a few kg heavier if i dont share all the yumy chocolate.

Please know that I do go back to all your visits, cards, emails and messages when I start to wobble.  I draw strength from every contact and am buoyed by the incredible support I have received. 

Now my big challenge until "the news" (AKA pathology) comes in later this week is to keep living in the present and not slip into worrying about what might happen. Something will happen, and I will accept it as best I can knowing that I have lots of support and help to get me through. 

Day 32 (Saturday 12th October): Not fair

Today was a normal Saturday for most people filled with things like kids' sport, birthday parties, grown ups' outings, errands, seeing friends, sharing a bottle of wine, family dinners, etc. Not for me. I wandered the hospital feeling incarcerated with drainage tubes hanging out of my side.  And this is just the beginning of the journey. It's not as though I am making a choice to step back for awhile to achieve a university degree or win a race medal or give birth to a new life. Instead I have no choice but to fight for my life. It's not fair.

I'm told I'll be too focused on and tired from the fight to miss being part of the normal things. I hear the things that will save my life will make living it insufferable for some periods of time. I will be living in my own bubble. It's not fair.

Thanks to all who reached out today. The visits brought me out of the isolation. The pictures sent kept me connected to the world. The messages kept my spirits up. The flowers made me smile.

I know tomorrow is another day. I know everything looks better in the morning. I am positive that this, too, shall pass. It's still not fair.

Day 31 (Friday 11 October): Progress

I am always amazed at what a good night's sleep can do. I was disturbed a few times by my lovely nurse, Amy, checking my fluids and helping me wheel my drip to the toilet, but I had a great rest nonetheless. I felt so good that at 6.30a I asked Amy to take me off the fluids and morpheine drip and make me more independent. It's no surprise that shortly thereafter my BP went up to 112/63 which made everyone much happier.

Dr. Andrew came to check in at 7a. He was pleased to see me off the pain meds and feeling better. "I told you I was gentle," he said. Noting the still heavily flowing lymph drains he said I'd be in over the weekend. When I asked about possible treatments and lengths he was very clear that we can't plan anything until we find out how big the tumours are and how far the cancer cells have spread into the lymph nodes. He indicated that we should have those results by mid-next week.

Claire, one of the wonderful Breastcare nurses, elaborated on the results bit when she popped in to visit around 11a. She explained that once the results are in, the multidisciplinary team, consisting of surgeons, medical oncologists, radiation oncologists and Breastcare nurses, meet to discuss treatment plans for their patients. I would then be handed over to an appropriate specialist who will manage the next step of my treatment. Complicated, eh? At least lots of thought goes into it.

The majority of the day was filled with loads of uplifting visits from friends bearing coffee and berries, naturopathic supplements to aid my recover plus chocolate-covered berries, a very interesting book and magazine plus hand cream and nuts, toothpaste, chips, juice and bikkies and Lindt and Hershey's chocolate. Combine those fabulous pressies with all the laughter and chatting, plus a bit of BBC World News podcasting, FaceTime with friends and family overseas as well as with Remie and Alex and hours with my wonderful hubby and I'm feeling better than when I arrived ;-)

Day 30 (Thursday 10 October 5p): Recovering

Dr. Andrew came in this morning at about 9a on his rounds. After updating him on my pain level and nausea, I asked about the axillary dissection. He confirmed that my sentinel node was "dodgy" so he took out approximately 12-15 more (no wonder my arm is sore!). We should get the pathology back in a week, at which time we will have a clearer picture as to what the situation really is. We discussed the likely next step which seems to be chemo for 4-6 sessions (one every three weeks). More words I was hoping not to hear. I'm just going to keep preparing myself for the worst and hoping for the best as that is how this journey seems to be starting.

He did, however, tell me that my expander has 200ml in it already so I'm not totally flat. Good news.

 I'm approaching 24 hours post-op and am feeling well enough to be over all the tubes and wires. I had a big lunch (after not being able to keep brekkie down) followed by a lovely shower a few hours ago and am wearing my own PJs. Thanks to Chris, Sue, Deb and Fred for the visits. You cheered me up. And Nick was just amazing all day helping me get organised and moving.  little snooze I just had has improved my energy and I am surrounded by gorgeous flowers (thank you to all their senders) so things are looking rosier.

The medical stats at the moment go like this:
BP  110/63 (woohoo! My dizziness is gone)
I still have a drip (fluids and antibiotic)
I still have my PCA  even without it I don't have too much pain
I have 2 drains from my left armpit where the lymph nodes were removed
I'm still in the sexy white compression stockings

I had a visit today from Lynn, one of the Breastcare nurses. She showed me the exercises I need to do for my left arm, explained more about my drains, advised me on how to avoid lymphoedema, and gave me some info on chemo (including wigs and scarves) and a special bra that will hold my temporary "pin cushion" prosthetic breast. She was lovely and very helpful. I'm starting to understand what I was told about entering into an amazingly supportive community.

Day 30 (Thursday 10 October 1.30a): Quick surgery recap

I finally had my surgery about 7pm last night so I am perfectly drugged up on pain-killers at the moment. The surgery went into OT for 30 mins from the initial estimate of 1.5 hours becaure Dr Andrew had to do an axillary lymph node biopsy. Based on my understanding that means cancerous cells were evident in my sentinel node. When I asked the recovery room nurse  "Was it only a sentinel  biopsy?" and she told me that more were removed, the tears flowed (as did the expletives). That was not the result I was hoping to hear. Dr Andrew will come later today to brief me, so for now I will go back to my patient-controlled pain meds (I just push the button) and try to rest.

Still Day 29...

And I am still waiting at nearly 5.30p! There are 9 of us in today and I am at the end of the queue. I am not alone fighting this disease. Over and out for this pre-op phase...

Day 29 (Wednesday 9 October): Still waiting...

It's now 2.45p and I am still waiting. I have been moved to my room (36) on the McQuoin Ward where lovely flowers from Rockwell Collins were already waiting. I'm thinking that maybe this whole thing is a bit of a dream and they've decided that I don't really need to have any surgery. My bags are unpacked and I'm all sorted for my stay at Hotel Mater. Might make a plan for world peace now as I'm convincing myself that the diagnosis was all a mistake.  Or not. Waiting is such a drag.

Day 29 (Wednesday 9 October): At the start line

I am now an in-hospital cancer patient, waiting in a bed in day surgery for at least 4 hours until I go into the operating theatre. It is still an out-of-body experience.

I got out of bed to start my day at 6a and checked on the kids. Remie was still asleep but I hear noises from Alex's room. He was sitting up reading. I told him it was a bit early and convinced him to lay down for a cuddle. What a wonderful thing to do. I jumped in the shower then climbed back into bed with everyone for a family cuddle. Fantastic send off.

Chris picked me up at 7.15a. She has the Breast Care pack that was apparently delivered this morning. I opened it and bras and fake boobies went everywhere. Oops. We had a record run to North Sydney and even had time to stop at a cute cafe for a coffee and fruit salad. I so appreciated the effort she made and her wonderful company. It was another tick for the great start to the day.

We then made our way to Nuclear Medicine at the hospital for my 8.30a appointment. They whisked me straight in, had me take my top off and lay on the machine bed.  I was then given 4 little shots around my nipple and moved into the machine, called a "Detector 2" (somewhat like an MRI machine but nowhere near as confining), for a few pictures. Not too bad. I rejoined Chris, who was being given strict instructions from the doctor to get me back at 10a. Up to the level 2 Day Surgery we toddled, where my admissions paperwork was done. Chris and I waited until I was actually called in to do more paperwork, get labelled and have my blood pressure taken. We left the admitting nurse to race back to Nuclear Medicine and bumped into Nick at the lift. Back to the bowels of the building we sped. I had more pictures taken with two different machines. The doctor put coordinates on my left breast with marker to indicate where the sentinel lymph node is. Apparently it is all text book.

Chris said goodbye and Nick and I returned to day surgery where I was shown to my bed, gowned up, given a blood-thinning injection and dressed in TED socks.  Claire, one of the lovely breast care nurses, paid us a visit. Her overall supportiveness and reassuring comments diffused some of my anxiety. I will get through this step just fine.

 It is noon exactly and there  nothing to do now but wait. I know the start gun will go off soon and, at this very moment, I feel ok about getting through thebfirst leg. I might feel differently tomorrow. Or I might not. Time worrying or thinking about it is wasted. Off to hanging out with Nick and then the trashy mags interspersed with Fast Company and The Economist when he has to leave. More later once I get to the first buoy. Love to all. Xx

Day 28 (Tuesday 8 October): I'll be a kg lighter in 36 hours

It's true: I am going to have a few grams or so taken off.  Yes, it is a radical way to do this, but it's a fact.

For all who want to know, I'll be found at the following as of tomorrow:
The Mater Hospital
McQuoin Ward
Rocklands Road
North Sydney, NSW 2060
t: (+612) 9900 7381

I'll have my mobile and will post.

Day 27 (Monday 7 October): T minus 2 (or "It's getting very real")

In two days (that is 48 hours) I will be a cancer patient.  I will be in hospital having just had my left breast removed.  I packed my hospital bag this morning and got sad looking in my cupboard.  How will my clothes look?  What bra will I wear?  What will I wear to hide my disfigurement?  How weird will my "prosthetic breast" feel?  Will people notice?  This is the first surgical and cosmetic step.  I can only hope that this is the biggest and hardest part of it.

I'm so not looking forward to the nausea, constipation and general crappy feeling that accompany coming out of surgery.  I seriously added a bag of prunes to my shopping list for tomorrow.  Did I not just go through this 18 months ago?!  The memory is all too clear, which I suppose is a good thing in that I can draw on the recovery experience and recall that it felt like it took forever but really just took a few weeks.

I will go back to the positives: awesome friends.  I had a lovely day with good friends eating, drinking, chatting and laughing.  This is the stuff that matters.  I also received a supportive email from a former good friend who chose to cut contact about 7 years ago.  I would've sworn that pigs would fly before I ever heard from him again so I was very surprised but deeply touched.  See, some good things do come out of bad stuff.

Day 26 (Saturday 5 October): Rollercoaster

Today I am a bit down. I am tired. I am stressed.  I am scared to get on the train that takes off next Wednesday at the Mater Hospital.  I have been yelling at my kids for a day now about things that don't matter in the whole scheme of things.  Why can't I just cuddle them and laugh with them?  I am sad they are being pulled into my "swirly vortex of terror, dude" (quote from Crush in "Finding Nemo"). 

We did a pre-op/early Xmas family photo shoot today.  A photographer friend was kind enough to come by the house and do a few shots that make us all look good.  I'm pleased we did it (at a friend's suggestion) but wish we didn't have to rush it to try to capture the pre-hell period. 

We took the kids out to dinner at the Manly Grill to kill some time before my little angel had to head off to hospital herself.  She is doing a sleep study tonight at the SAN hospital paediatric sleep unit.  She is scared but being very brave.  We told her that there is nothing to be afraid of as nothing is going to hurt her as they will just be sticking some wired to her skin with something like tape.  I cried when she and Nick drove off at 7pm.  It's now 9pm (which is more like 10p as we switch to daylight savings tonight) and she is finally wired up and ready for sleep. Daddy is with her (sleeping in a little bed beside her) since he has done one of these before. I am sad that she has to go through this medical experience but I hope we can find out why she sleeps for 10+ hours and wakes up exhausted.

Alex and I headed down to Little Manly to watch the fireworks that were being put on as part of the Fleet Review.  A few friends and their kids caught up as well and all had fun.  We bumped into a friend who had a double mastectomy 20 years ago.  She was really upbeat which I needed.  I texted her my thanks and she reminded me that "[I] will have bad days, that's a given.  But if [I] hold on, there will be stacks of other good days. ..we will look back and laugh at this in 10 years."  I so needed that.  I'm off to sleep as it was an exhausting day.

Day 25 (Friday 4 October): Boobies in the surf

I can attest to laughter being the best medicine. I was with some friends today and I was explaining what was going to happen with my surgery, which will involve both a full mastectomy of my left breast and a sentinel lymph node biopsy (SNLB), a procedure in which the sentinel lymph node is identified, removed, and examined to determine whether cancer cells are present.  A negative SLNB result suggests that cancer has not developed the ability to spread to nearby lymph nodes or other organs. A positive SLNB result indicates that cancer is present in the sentinel lymph node and may be present in other nearby lymph nodes (called regional lymph nodes) and, possibly, other organs. This information can help the doctors determine the stage of the cancer (extent of the disease within the body) and develop an appropriate treatment plan.

I will be in hospital at 8.30a for a lymphosintogram, which is an injection of radioactive substance, a blue dye, or both near the tumor to locate the position of the sentinel lymph node.  I will have to wait a few hours while it works its way to my lymphatic system. 

A few hours later it'll be off to surgery.  As part of the mastectomy, the blue dye is also injected into the breast. The blue dye will travel to the lymph nodes via the lymphatic vessels and the sentinel lymph node(s) should turn blue.Dr. Andrew can see the blue sentinel node(s) and detect the radioactive substance using a type of Geiger counter called a gamma probe. He can then remove the sentinel node(s). If more than one sentinel node is found, all the sentinel nodes are removed. If another enlarged lymph node is found in the armpit without dye in it, he might remove this node as well. If the sentinel node is not in the armpit, the surgeon will remove it if this can be done safely.

The sentinel node is then checked for the presence of cancer cells by a pathologist. If cancer is found, Dr. Andrew will do an "axillary dissection" which involved the removal of additional lymph nodes.

All of this wait-and-see-what-happens is why my hospital stay is quoted from 3-7 days.  

Ok, back to the humour.  We were then talking about the "breast prosthesis" that I will have until the time comes to rebuild lefty.  I was lamenting the fact that it is summer and I'll have to deal with this fake booby when I swim. I then had an image of me coming out of the surf and getting dumped by a wave and the prosthesis being carried away.  We had a huge laugh about about the thought of me calling out: "Somebody grab my boob!".  Ahhh, turning the dark into light can be entertaining.

Day 24 (Thursday 3 October): All the best laid plans (or not rollerblading in the hail)

Day 23 (Wednesday 2 October): Final hurrah/back to reality

We spent the morning packing with the intention of getting some final swimming and playing in before our 11.40a pick up.  We managed to get out by 9.30a and meet up with our friends for a last play of the holiday.  The kids had a ball swimming and the adults had a coffee and chatted.  We went in and out of holiday mode as we prepared to head home.  Our friend suggested that we do a family photo shoot before the surgery, so I asked a photographer friend in Sydney who was happy to help.  We said our goodbyes and headed off to the airport.  Bye bye Hamilton Island.

There was a big package waiting for me at home.  I'd almost forgotten that I'd ordered the "My Journey" kit from the Breast Cancer Network Australia (http://www.bcna.org.au/my-journey-kit).  It is a fabulous resource and made me realise how much support there is for breast cancer, but it also made me realise that this is indeed going to be my reality.  Thankfully I'm not pioneering on this.

Day 21 (Monday 30 Sept): A snapshot

The kids happily went off to the Clownfish Club today at about 1p after negotiating staying home for lunch ("All they serve is Vegemite sandwiches on white bread.  Yuck.").  We arrived to all the kids watching tele so they ran over to join in.  Nick and I then headed to the child-free Beach Club for lunch and a few drinks.  The setting was lovely and the service was great.  We chatted about the everything and nothing and just enjoyed being together.  We didn't have anywhere to be or anything to do.  It was all really peaceful and easy.  I'm going to hold on to that and pull out the picture lots in the coming months.

Day 22 (Tuesday 1 October): Everyone has his/her own reality

As I was parading my girls around in my little Blue Glue bikini that I got in Bali in April (and swore I would never wear out of the confines of my own house), I started wondering what people might think of a nearly 50-year-old woman with a saggy tummy wearing a bikini in public.  I could imagine that a few would pass judgement, likely just in their own heads but possibly to their companions - like I might do myself.  It reminded me that we never know what is happening in someone else's life and why s/he does what we see.  Years ago a friend told me that he was in his own world for months as his mother went through brain cancer treatment.  I will try to be less judgemental and try to take other people's actions, reactions and behaviours less as a response to the world around us and more of a reflection of what's happening in his/her world.

Day 19 (Sunday 29 September): "Is it cancer? Are you going to die?"

We went down to the beach a bit past 8a and met our friends who are here on holidays as well. Nick took Alex and his friend out sailing on a the little catamaran while Remie and I waited for all the girls to come down for a swim.

She was playing in the sand, so I went and sat next to her. I started by telling her what I'd told Alex: I've been a bit unlucky as, from the tests that were done on my booby, the doctors found a lump in it that shouldn't be there.  "Are you going to have an operation?" She asked. I told her that I am and explained that I was going into hospital (the same one i went to for my hip replacement) the week he goes back to school so the doctors can take it out. "Is it cancer?" she asked. I told her it is. "Are you going to die?" was her next poignant question (a preschool friend lost his father to brain cancer just over a year ago). I told her that i would, but i'm not planning on it until I'm about 100. I also mentioned that there are different types of cancer and this one is the most common so the doctors know a lot about it and how to treat it. I told her that they are going to take the whole breast off to try to make sure they get it all. "Will you have a scar?" She asked. I told her that I will. "Will it fade?".  We checked out the one on my hip and she was satisfied that it will fade over time.

We are going to have to keep a close eye on her as this journey progresses. I have a sense that she's going to swing wildly from being fine to being terrified. I am so very sad that she, too, has to be part of this. Perhaps helping support her will help me get through it as well. Only time will tell. 

Day 18 (Saturday 28 September): Sailing

The day dawned sunny and still. A beautiful day. But not exactly the day to be out on a 41 foot chartered sailboat if one was looking to practice sailing and learn more. What can you do? 

We gathered our swimming, snorkelling, lunch and activity things and headed down to the dock. After Remie and I ran a few last minute errands we met the boys at the boat called "Karma".  We climbed on board and waited for Barney, our skipper. The kids were so excited.

Barney finally arrived and was not at all what we expected.  He was not the mid-50s salty Aussie bloke who we thought he would be given the name.  He was instead a mid-20s English lad with a penchant for adventure and a calm demeanor - perfect for us.    

We got underway after our initial briefing and the boys enjoyed their sailing while the kids checked out the boat and I enjoyed the scenery and experience. Seeing the area from the water was amazing.

We talked with Barney about his experiences as a skipper.  He entertained us with the story of the Chinese man who just wanted to fish all day ("He was up at 5am with 2 fishing lines in the water!").  He told us about the woman who broke down and cried about her terminal cancer.  I decided at that point to keep my plight a secret.

We had a great day sailing (motoring mostly), snorkeling, riding in the dingy, lunching, swimming and even hiking up to the lookout on Whitsunday Island.  We saw stripey fish, beautiful corals, stingrays, a gorgeous beach and lots of boats.  It was a great day.  I am lucky to have had the opportunity to have experienced it.

Day 17 (Friday 27 September): "That's unlucky, Mum, but it could be worse"

I took Alex out past the airport to the driving range to hit a bucket of balls while Remie had some quiet time and Nick did some work. We were the only ones there so the instructor gave Alex a great little lesson and off we went. We have lots of room for improvement but had a great time. 

On the ride back I used Alex's favourite phrase, telling him that I'd been a bit unlucky as, from the tests that were done on my booby, the doctors found a lump in it that shouldn't be there. I explained that I was going into hospital (the same one i went to for my hip replacement) the week he goes back to school so the doctors can take it out. I also explained that they are going to take the whole breast off to try to make sure they get it all. He was quiet for a moment, processing. "We'll, at least you know that hospital. And you probably won't be as sore as you were with your hip because it's only your booby."  Another pause. "That's unlucky, Mum, but it could be worse. [My friend's mum] had to get both of hers off. But she's fine now."  Bless his soul. I'm so very sad he has to go on this journey with me, but I know I have a great travelling companion.