Day 210: Breaking the bank

When Mum and I arrived at the radiation suite, I asked how late Minerva was running and was told not long. Shortly after, I was called into a very small room by a woman with "administration in her title to "have a talk". You guessed it: she needed to run me through the costs for my treatment. She first told me that they invoice weekly in arrears on Wednesdays (I missed last week as we hadn't had this talk). She then asked me if I had my Medicare Safety Net in place (I do) as the cost of the first week usually pushes a person over the safety net. Finally she came to the estimated cost for the 5 weeks of treatment: $20,000 (it could be more depending on the number of scans etc.). Medicare will cover about $15-16k leaving me out-of-pocket for $4-5,000. Private health won't cover it as I am not an in-patient. Wow.

Mum and I had a nice lunch in Stocklands on the way home and picked up a few things for dinner. I did reading groups with Remie's class while Mum stayed home to prep dinner.

After school, Alex enjoyed playing with the Lego H passed on as part of their pre-move toy cull. Remie had a massive meltdown when she tried to do her news homework. Even Mum had enough of her behaviour. She pulled herself together after dinner and sorted herself out for bath and getting dressed. She is quite the conundrum and is exhausting.

I am tired and would be even without the treatment, I think.  My broken sleep doesn't help - blasted menopause. I am so looking forward to getting some energy back.

Day 209: My Mum arrives

It was very dark when I awoke. I quickly figured out that Remie's light was on and she was up and about. I went into her room and asked her what she was doing up, and she said, "Memere gets in this morning and you told me I could get up at 6a". It seems she looked at her watch, which was the only time-keeping device in the house I hadn't set back last night for daylight savings. Oops.

We got to the airport and, after watching the people come out and waiting, we finally found my mum in the back corner of the arrivals hall. After cuddles all around we headed home.  We did stop for a coffee and hot chocolate as caffeine was a good idea.

We spent the morning pottering around the house, then headed out for sushi after a clothing-related tantrum from Remie. She apologised on the way, saying she realised that she was just hi grey; she ate 4 plates of sushi at lunch!  The afternoon was marked by another massive tantrum when we sat down to read the paper and suggested it was quiet time for all. Nick and Alex arrived home just in time for dinner and we heard about their adventures.

It's great having mum here. I hope she sleeps well as she was ready for bed by about 6p bit we kept her up until nearly 8p.

Day 208: A big subject for a little girl

Remie seems to have had a lovely weekend so far.  She has commented a few times that it's better when Alex is here because he plays with her, but overall she's been happy playing on her own or hanging out with me.

We went to see Rebecca, the psychologist, again today.  She and I had talked on Monday as a follow up to our last appointment. In the appointment, she'd come to see that Remie has trouble settling down. She asked, as follow up, about Remie's medical history and was pleased to hear about the ENT check for tonsils and adenoids as well as the sleep study. She mentioned that some of Remie's behaviours were similar to ADD and suggested a pediatrician visit just to get a bigger-picture view.  She did say that she could see some mild anxiety regarding my treatment but she wondered if there was something else.

In today's appoitment Remie mentioned that she didn't like that I have to go to radiotherapy. Rebecca asked her what about it she didn't like, and she said that she didn't know what it does to [mum's] body. We explained it and she seemed ok. Rebecca and Remie spent a bit of time together talking about feelings. It was a good session, but I'm sad that poor Remie has to deal with all this in the first place.

In the theme of our girls' weekend, we got her toenails painted (no fingers as it's not allowed at school) and had a wonderful high tea at The Bolierhouse at Q Station with Sue and J, Rach and M and Jenny and Z. The girls enjoyed the food and the play on the beach afterwards and the grown ups just enjoyed it all.

Remie and I came home and watched "Bugs Life" as a little treat after a very light dinner. I went on to watch another "House of Cards", racking up 3+ hours on the louge. Perfect.

Day 207: Not exhausted

It's 9.45p and I am not asleep. Wow. Perhaps having an exercise rest day is a good thing. Or maybe it was the great sleep last night. Who knows, but it's a nice change.

My radiotherapy took up 2.5 hours round trip today. Blah. I did ask, upon arrival, how late they were running. I was told 20 minutes, so I hurried up to maternity in time to see Aileen and Derek bathe gorgeous little L for the first time. Very exciting. I even got a cuddle, which made the wait worth it. After heading back down to radiation oncology I still had to wait another 35 minutes. I'd heard they can run a bit late but this is ridiculous.

Another bit of excitement in my day was having a coffee with a W&M classmate who's in town from the US on business. I haven't seen Suzy in 26 years but the college/uni bond provided the basis for a great hour of conversation. It was a wonderful little treat in my week.

I popped around to the end of Remie's play date with M and had a lovely catch up with Sarah while the kids ate the pizza they had made themselves. A bit of AFL and a "House of Cards" episode and Friday has ended nicely.

Day 206: A poke in the eye with a sharp stick

When I met with Dr. Hilda the other day (she is a medical as well as genetic oncologist) she noticed my weepy eyes. She said they should clear up in a few weeks, but if they don't, an ophthalmologist could use a little metal stick-like tool to re-open my tear ducts.  That sounds horrendous! Fingers crossed that my eyes clear up on their own as I am not interested in a poke in the eyes.

My exercise today was a walk along the beach in the sun. That was enough on my cankles and calves.   I used the extra time to pick  up a present for Aileen and new baby Leila.

Sue came with me to radiotherapy to see Aileen sand Leila and join Maria and me for lunch. Unfortunately we spent 1h10m in radiation oncology due to a few people before me having a tough time. The "Minerva is running approximately 20 minutes late" sign went up 10 minutes after we arrived, but it was too late for me. My time in the machine was quick and easy, so that's good at least.

We had a quick 10 minute visit with Aileen and ended up totally missing Maria. Bummer. We did end up having a nice lunch and solving Sue's moving issues, so that was good as well.

After swimming lessons I took Remie and her friend K out to dinner as a special treat since Nick and Alex are away at Nick's father's family birthday weekend (I couldn't go due to radio appointments and my mum's arrival on Sunday, and Remie is sleepwalking and having night terrors so sleepovers aren't a great idea). The girls had a lovely time despite not getting a frog in the pond.

Remie was up with a big but quick night terror 45 minutes after going to bed. This one included screaming then whimpering, sleepwalking and jumping, plus going straight to the toilet. She was back asleep within 10 minutes. Poor girl.

Day 205: Stamina - or lack thereof

Perhaps starting back to exercise the same week as starting radiotherapy was not one of my brightest ideas. I can only hope that's what making me so very tired these past few days. I think I'll cut back a bit tomorrow in order to make it through the week.

My 45 mins at the gym this morning was anything but strenuous: my cardio was basic and the weights program was fairly light. I was still tired at the end.

I got clever a and made a green smoothie to take with me on the drive to hospital. I had the words of the nurse ringing in my head: "it is very important to maintain a healthy diet".  She told me this after taking my weight, so I figured I ought to listen. The smoothie doubled as lunch so I best add a bit more protein tomorrow.

I was in radiation oncology for 46 minutes today. So much for quick appointments. I waited for a good 15 mins, during which time the lovely 70+ man sitting across from me asked me where my boots (that I was wearing yesterday) were and that he liked them. Sweet. I had to see Bronwyn, the nurse, before I left, but neither of us could figure out why since I was fine, so she sent me on my way.

I hopped in the lift up to the maternity ward to see my friend, Aileen, who was waiting to have baby #4 by c-section. I'll get to cuddle the baby and visit her tomorrow after my appointment. I'm just waiting for the announcement to find out the gender.

I came straight home to have a nap.  It started very successfully (including drool) but ended quickly thanks to the neighbour with the saw. Bummer.

I think I need to make a few adjustments to be able to make it through the next 5 weeks. It's 8.40p and I'm in bed, so I doubt that can move much earlier. I'm just going to have to slow down and remember I'm still in treatment despite the chemo being finished.

Day 204: Radio delays and genetic testing counselling

The day started with taking Remie down to the beach at 6.50a to watch the sunrise. The weather was predicted to be perfect and we set the clocks back this coming Saturday, so it was the ideal day. I'd been hoping to be organised enough to go out to brekkie then straight to French at 8a, but with the 3.30a wake up from Remie I was sower than usual. The sunrise and time out were spectacular and well worth the effort.

I went to the pool after drop off and did 500m without fins then 500 with. I didn't think I could get any slower but I managed it today. I had to stop after every 100m to catch my breath. I'm blaming that on my anaemia and not on my lack of fitness.

I didn't call ahead for radio and when I arrived there was a sign up saying that Minerva was running 20 minutes late. My time in the machine was a bit quicker today, but all up I was in the radiation oncology rooms for 55 minutes. So much for quick appointments.

I went to do a bit of retail therapy at Chatswood to kill the time before my 3p genetic testing counselling appointment  at the SAN hospital in Wahroonga.  A visit to Myer and Zara sorted me out, then I grabbed some sushi.

While I thought I'd left myself lots of time to get to the SAN given I'd never been there before (Remie did her sleep study there), I arrived on time. Dr. Hilda, a genetic oncologist, spent 45 minutes with me discussing genetics, family and risks. My big reason for being there was that my mum's sister died of ovarian cancer at 42. Coupled with my breast cancer, there is a chance that genetics may be involved. Based on our discussion, however, it's not very likely. I could choose to have my ovaries removed and/or a right prophylactic (preventative) mastectomy without testing.  At a cost of $1,650, the testing isn't cheap (she did say it was about $5k in the US).  I'm on the fence now as to whether to do it or not. It might mean something for Remie, but I could always do it later as there is no imperative. Ahh, the choices life gives us.