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...