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.