Wednesday 30 April 2014

Day 233: "Chronic ulcerative burns"

That's how the information sheet that accompanies the Solugel describes the possible side effects of radiotherapy.  It sounds horrible, but in actuality isn't quite so bad (I will spare you a picture).  It is getting very sore under my arm (I've never had a sunburn in my arm pit) but I'm confident that it's manageable.  Dr. Susan gave me a prescription for another burn medication that I'm to start using when treatment is over next week.  She wasn't too worried so I figure I shouldn't be either.

I went to the gym today for the first time in ages.  It was nothing very energetic but it felt good.  I thought I need to start at some point and today seemed like as good as any, especially after I had a great sleep.

Treatment has been quick in the past 2 weeks.  I was out in under 40 minutes today, which included seeing Dr. Susan.  Not bad.

I had the energy for two catch ups afterwards.  I hasn't seen Sue L.P. in months, so I stopped by her house on the way home.  Then Ing and I had a coffee and identified that we are stuck and it's time to get moving on finding something to do aside from looking after our families. I think 2014 will be the year to get unstuck (in a good way...).

Nick is away for the next 2 nights at a work event locally, then to Korea on Monday for the week.  I'm away for the weekend to farewell Sue, so we'll be like ships passing in the night.  Now if only the kids can help in the mornings I'll be alright...

Tuesday 29 April 2014

Day 232: Ready to drop

It's 8pm and I'll be turning the light out soon. I am completely exhausted after 3 nights in a row of being awake for 2+ hours after a hot flush. This menopause gig is not remotely restful.

My radiation burn is also getting worse. The whole treated area is now that angry red that happens after lots of time in the sun without sun block. I would be able to handle this but the lack of sleep is making everything challenging.

Thankfully I know that this, too, shall pass. I thought that today as Dr. Craig was patching my chipped front tooth (I think it happened during my last round of chemo but can't quite remember). At least now I have a very beautiful tooth.

I'm off to chase elusive sleep. I'm sure the world will be a rosier place after I get more than 3 hours in a row.

Monday 28 April 2014

Day 231: I am like a tree

Today I took off my dark blue nail polish for the first time in 16 weeks (wow, I hadn't realised it'd been that long until I just counted it). While I'm supposed to keep my nails covered due to the photo sensitivity of the docetaxel, I wanted to see how they looked and figure a few days uncovered can't hurt. Not only have most of them peeled, I found out that my thumb nails actually have rings marking my chemo treatments as I'd been told can happen.



Today I give thanks for a friend who helped make my day easier. Kirrily looked after Alex and Remie while I went to radio and organised her sitter to take the kids to The Lego Movie. My appreciation I'd huge.

Not much else otherwise. Getting up in the morning remains challenging as sleep interruptions (hot flushes and the inability to get back to sleep - not Remie) continue regularly. I'm fine otherwise and pleased to report that my sense of taste is mostly back and my eyes have mostly stopped watering (though they are still sensitive). In 3 more weeks I'll be feeling much better and cancer will be only one part of - not the focus of - my life.


Sunday 27 April 2014

Day 230: Weekend of relaxing

I said goodbye to my mum and nicked away for the weekend with my family, so I took the weekend off writing.

On Friday morning we all packed: Mum for her return home and us for our weekend in Wombatra, just over an hour south and about 45 minutes past the airport. It was Anzac Day, so Alex wanted to March with Cubs in the parade to the memorial ceremony at 11a. Nick accompanied him and we girls went to watch. It was my first time attending a service in the 15 or so opportunities I've had. We dashed when the rain started.

We got mum checked in and organised some transfer help for her at SFO. Then we all had lunch before saying goodbye. I was sad to watch her walk to Customs, even though we'll see her in a few months. It all seemed a bit easier with her here and it was so great to have her company and support.

By mid-afternoon we arrived at the little beach cottage we rented. It sat on the cliff above Wombarra reef (and the "mermaid pool" we discovered a few years ago while on holiday with Sandy and Mig). We spent our time over the next few days between playing at the reef and nearby beach and hanging around the house reading, talking or playing games. It was just the slowing down that we all needed.

With only 10 more days until the end of the parts of treatment that focus on killing fast-growing cells that are dividing, I am feeling ok. I have a worsening "burn" on my chest, with the skin by by left collarbone actually peeling. The night "wrap" seems to help with the overall area; it's clear that I'll need to put some heavy duty cream on the peeling area in addition to the aloe and sorbolene. I'm told that my skin will get worse the week following my final treatment, so I figure I'm in skin-preservation mode for another few weeks.

Thursday 24 April 2014

Day 227: It's not all about treatment

The Sydney Brick Show started today, and we had tickets.  That's right, Lego fans, it was all about what people can make with those cool bits of plastic.  Mum, Alex, Remie and I drove Errol to Sydney  Town Hall and we spent an hour looking at all sorts of amazing creations.  We even chatted with Ryan McNaught, the only Lego certified professional in the Southern Hemisphere (of only 13 in the world). The kids used the money they earned yesterday from cleaning my car to buy 2 new sets.

We left and winged it: we had a coffee in the beautiful and iconic QVB across the road, then we had our packed lunches as a picnic in Kirribilli park looking at the Opera House and finally we had ice blocks (it was nearly 30 degrees C) in a playground and hung out with Col at JackWattsCurrie, my ad agency from my Yahoo! days. We dashed to radiotherapy and were out in 20 minutes. Fantastic!

We had our last dinner with my mum tonight. I'm sad she's leaving as it's been so nice to have her here just having her company has been comforting to me and the kids. But I suppose that all good things come to an end (the corollary to "this, too, shall pass).

Wednesday 23 April 2014

Day 226: A new look

I dragged myself out of bed at 7a because I remembered that Susan was coming to do yoga with the kids. I'd been up from 1-2.30a as a result of a hot flush, as seems to be the case a few nights per week at the moment.

After the kids' yoga, Alex and I went to have our eyes checked as he wanted new glasses with transition lenses and I wanted daily disposable contacts. His prescription got slightly worse (he's at +2.25R/+1.25L) and mine was the same. I had to try on the contacts and could definitely feel how dry my eyes are. While I'm happy to have the option of contacts, I'm happy to continue wearing glasses- as they are definitely more comfortable.

From there we zipped to hospital. Dr. Susan was at the radiation rooms, so I met with her upon arriving. She was pleased with the elasticity of my skin and not too bothered about the "minor" burn. She asked me how I was sleeping and, when I told her, consoled me by explaining that's the usual pattern and assuring me that it will settle down. In the meantime, she gave me a script for Tamazepam, a light sleeping pill that should help me get back to sleep in the middle of the night but wake up ok in the morning.

I then dropped Alex at home with Mum and Remie while I went to see Heather, my miracle-worker hairdresser. I walked in with hair like this:





Emma Watson's short hair inspired her, so she cut and coloured and made me look as glamourous as possible at this point in time:



I'm not sure I look much like Emma Watson, but I do feel that this was a great way to mark my 6 week anniversary of my final chemo session.

I got home, tidied up and prepped afternoon tea. Mum spent the day making a batch of French-Canadian meat pies at Remie's request. Sue, H and J came by for a catch up, which was great. I can't believe they'll be gone in 2 weeks :-(

When they headed out, we went to Manlt for dinner with Simon and Bel, Z and A and Simeon's parents. It was wonderful to catch up after way too long.

I jumped into bed a bit past 8p. Fingers crossed I can sleep more than 3 hours in a row.

Tuesday 22 April 2014

Day 225: Back at it

No sooner had I walked into radiation oncology for my 1.30p appointment than my name was called; I hadn't even swiped my "check in" card. It was really quiet, which made sense after I overheard one of the radiotherapists mentioning at Apollo, the other machine, was down. I was out of the machine in 15 minutes, but was then told I needed to hang around for a mid-term scan. About half way through the course of treatment a scan is done to make sure nothing had changed regarding internal dimensions (e.g. Weight loss or gain) as radiotherapy is so very precise (I want them to know exactly where my heart and lungs are so the beams stay clear of them).  All was fine and I was headed home in 45 minutes.

Other than that,an aborted eye exam for Alex and me which turned into grocery shipping, and a trip to the local park for my mum and the kids, we hung around the house. There was washing to do and I was too tied to do much after being awake with Remie for about an hour and a half in the night. The kids did perform a little circus for mum and me which was very entertaining.

I did talk to one of the Breastcare nurses who told me to:
- keep my nails covered for 3 months,
- expect that my eyelashes will take quite awhile to grow back,
- spray a mix of salt and water on my "burned" areas to take away the sting, and
- look to the 3 month post-chemo mark as a time when most side effects will diminish (eyes and eyelashes take the longest)

I am definitely hanging in day-by-day at the moment. I am too tired to do most of what I'd like to, which is frustrating. I am looking forward to feeling better in 2-3weeks, but I am also cognisant that life is short so I am trying to appreciate every day.

Sunday 20 April 2014

Day 224: Easter weekend in Canberra

Canberra is the capital of Australia. It's like DC but it's not. There are lots of wonderful museums and the city is layed out in a very orderly fashion. It doesn't, however, have the same energy as DC. It's a bit of a ghost town, aside from the tourist attractions.  The city centre was buzzing the dat before Easter, but the rest of the city seemed very quiet. Given all that, it's been a perfect spot for our 3- generation little break.

We've seen Questacon, the kids' science museum, the War Memorial, the Inca exhibit at the National Gallery and the Canberra Glassworks plus have been on a few bike rides around Lake Burley Griffin. The kids enjoyed an Easter egg hunt at our hotel and the attention of all 3 of their grandparents.

I had a few rest periods (one for about 2 hours on Friday afternoon when I was exhausted) and quiet nights in our apartment once the kids had gone to sleep and the grandparents plus Nick hung out next door in their apartment. I was happy for the quiet time as I get so tired by the end of the day.

It was great to have a change of scenery. It was a bit of work coordinating everyone's preferences. I realised I definitely don't have a level of energy I am used to. It made me question a US adventure and made me think planning and the option to opt out will be key.

Day 220 (Thurs, 17 April): Treating the side effects of radiotherapy

Radiotherapy has 2 main side effects: "sunburn" on the radiated area and general tiredness. I am lucky enough to be experiencing both as of Tuesday. The tiredness apparently takes 6 weeks after final treatment to lessen; the "sunburn" will be at it's worse the week after final treatment then start to improve.

After treatment today, the radiologist noticed that my skin was starting to peel, so she brought me to a new nurse. He nurse suggested wearing soft bras, but I was on my way to Canberra for the weekend so I only had what was with me. She insisted that I keep the area moist and free from rubbing, so she showed me her trick: she smeared the affected with Solugel, then put a large piece of plastic wrap over it to keep the gel from getting on my clothing.  She then cut a large piece of stretchy "boob tube" elastic into a sort of singlet and slipped it on over the plastic. I felt like a piece of meat being cured, but it did make the "burn" feel much better. She gave me tubes of Solugel ("for ulcerative wounds") and another "singlet".

Mum, Nick, Alex, Remie and I had already been to the dentist for the kids' appointment on the way to the hospital. After my treatment we picked up Errol (the chemo car), who'd been at the garage, dropped it off at Nick's work, then headed down to Canberra. We made it in just over 3 hours (all 5 of us in my Honda CRV) and arrived to Nick's parents waiting. We headed out to a great dinner at Me and Mrs. Jones (thanks, Pruzer, for the recommendation). After getting the kids to bed and having a quick visit with the folks, I collapsed into bed.

Wednesday 16 April 2014

Day 219: Radiotherapy leaves its mark

Aside from the random traffic on the way to hospital, my radiotherapy went quickly.  I asked the radiologist about some itchiness on my chest; she confirmed that it is the result of the radiotherapy. Her advice was to keep the whole area from becoming dry and to avoid the sun (my whole chest on the left side from my collarbone to the midline and down is getting zapped). Apparently this area will be permanently more susceptible to sunburn. Finally, I'm not supposed to use any sun cream on the area while I'm having treatment.

The radiologist said that I needed to see Dr. Susan today as I hadn't yet seen her yet during treatment. She offered to call as Dr. Susan was at her office across the road. She came back to tell me that Dr. Susan had 2 patients she needed to see so I would see Bronwyn, the radiation nurse, while I waited. Bronwyn gave me some Solugel to keep the affected area from getting dry and, after confirming that Dr. Susan was going to be busy for awhile, sent me on my way.

As Wednesday is accounts day, I was asked to pay my $2,200 invoice on my way out. I'm looking it as 2,200 points closer to a free Qantas ticket.

While Mum organised dinner and the kids entertained themselves, I packed. We're heading down to Canberra tomorrow for the Easter long weekend.  Nick's parents are coming up to meet us. We're bringing bikes and planning to get to Questacon, the awesome science museum. I'm just looking forward to being somewhere other than home.

Tuesday 15 April 2014

Day 218: Worthwihile

This has been one of those days that sees me feeling very content as I head to bed. The morning included cuddles and happy kids. I got Alex to sailing a bit early so I could get to radiotherapy, which went relatively quickly.

Remie, Mum and I had lunch and then went to the circus. It was Remie's idea in the first place (she left a note on my desk asking if we could go) but we all enjoyed it. I left at intermission to pick up Alex from sailing, then we went back and caught the final act.

Pizza for the kids' dinner and "Despicable Me 2" ended the kids' day. Mum and I caught up with Sue, Rach and Jenny at Petra's At the Roof for a bit of shopping, bubbles and secret wome's business. We actually organised it for Sue to use her voucher we have her for her birthday. She's gone in 3 weeks from today so it's all starting to get real.

I enjoyed having a relatively normal day. I got time with my kids, my mum and my friends (Nick is in Malaysia) so the balance was good. We have to appreciate when that happens.

Monday 14 April 2014

Day 217: Uninspired

The skies were are grey, it's wet, I'm tired and I have some key things to do (like book flights to the US and do taxes). I would love, in theory, to exercise as well but my cankles are not ideally suited. I am tired of being tired and uninspired. I am over feeling like everything takes so much energy. Thankfully I know it's temporary.

So I try to do something little to remind me that I'm not just biding my time. I did book tickets to the circus tomorrow for Remie, my mum and me; Alex didn't want to go so I organised it for a day he's doing sailing.  I also submitted 8 items as claims to our private health cover, filled out my absentee ballot for an upcoming Seattle election and taught Mum how to FaceTime me. I'll be happy with that for today.

Sunday 13 April 2014

Day 216: Hospital-free days

I have enjoyed not having to drive to hospital and wait around. We haven't had much on this weekend, so I've been able to enjoy being I scheduled. It's a bit like I used to feel in SF on the weekends after ape bind 1h15m in the car each way to work, but at least I was getting paid. This is just more like having my time back.

It was wet and cool all weekend; I would've stayed in bed with a book if I could've. Instead there was a trip to the mall, 2 birthday parties, Nick and Kate, our neighbours, over for dinner and a quick dinner out with friends tonight. All events were good fun, so it was no hardship.

I am, however, feeling the cumulative effect. I'm tired, my nails are splitting, my hair is growing but is still patchy and thin, my sense of taste is still somewhat compromised, my tongue is yucky and my ankles are gone.  The good news is that my eyes have largely dried up. I know the nurses said it'll take 6 weeks to 6 months for the chemo side effects to go away, but I'm ready to be normal again. I've had enough of having to deal with all this stuff, miss out on parts of life but continue onward. I know I'll feel back up to coping after a good sleep, so I'm going to turn the light out now at 9p. Good night.

Friday 11 April 2014

Day 214: Non-stop

I occasionally wonder what this experience would have been like if I didn't have kids. On the positive side, I would be able to sleep when I'm tired, rest when I need and focus on what I need to do to get better. On the minus, I suspect I could wallow in self-pity and be much less connected. The point is moot, but I suppose that having kids has given me a reason to get up and keep going every day.

With all that, I could have used an afternoon of lying in bed reading. The school Easter Hat Parade was cute;thankfully the sun shone. This was followed by the daily commute to hospital with Mum and Chris as company. Chris checked out my treatment and called it " a science field trip".

Then it was home for lunch and a bit of admin.  From there mum and I did some grocery shopping, picked up the kids and took Alex to hip hop. We hung out and watched am bit. Home and dinner called, then bath time. This is all standard with kids; it's just much harder and more demanding when one is not well.

It was Sue and Jono's farewell party tonight. We were there early so I didn't feel badly leaving at 9.40p; I'd hit the end of my ability to be social. I just find it takes a massive amount of effort when I'm tired. Good night.

Thursday 10 April 2014

Day 213: Parking discount and side effects

It took 8 days of radiotherapy for me to find out that I can get my parking covered for $2 per visit. I've been parking on the street, which has been quite easy, but the garage was nice today to avoid walking in the rain. I suppose I could've asked up front, but equally I would think I might have been told. It all seems a bit more surreptitious in radiation oncology.

My parent-teacher meeting with Miss A was as expected. Academically Remie is a star so far. Miss A is keeping a close eye on Remie socially and emotionally as a result of our earlier discussions. I am very happy about that.

Today's appointment was relatively quick as I was out in 35 minutes. Stragely I don't mind my 15 minutes of rest on the table as there's nothing remotely uncomfortable about it and they'll turn out the lights and put on music if I ask. I haven't had any "sunburn" side effects so far.

I am still dealing with lingering side effects from chemo. My tongue is still a bit funny but my taste is slowly returning. My eyes seem to have stopped weeping since the weekend but they do get gritty and itchy about once a day. I suspect that my lack of eyelashes is contributing to that. I now have no lower lashes on my right eye and a total of about 6 on both eyes. The loss creates a strange look. I am now very glad I had my eyebrows done. Finally, while I thought I sighted my ankles this morning, they have disappeared again tonight.

Mum and I had a great lunch with Daryl after our hospital time. We enjoyed the last swim lesson of the term. Camilla brought me more of her fabulous vegetable soup which is perfect for our wet and cooler weather. Emma L. popped in for a quick chat tonight on her walk and suggested some ideas for my post-treatment project. I'm hoping to be able to get some time in the next few weeks to plan something, though that might be hard given the last day of term is tomorrow and then it's 2 weeks of school holidays. Where ther's a will there's a way, I hope.

Wednesday 9 April 2014

Day 212: Early and expensive hospital run

By 7.30a I'd already spent $5,500, sat in the car for 30 minutes and been zapped with invisible radioactive beams. You might think the day could only get better, but it wasn't a bad start to the day. First off, I got up, showered and dressed by myself peacefully. Secondly, I was into my treatment 10 minutes ahead of schedule and finished in 15 minutes. Finally, I was home by 7.45a and had the rest of the day.

Why so early? Apparently Minerva needs a major service every 6 months, and I just happened to catch one. The machine gets pulled offline from 7.30a and only priority patients get a spot; the others either miss a day or get a slot on Apollo, the other machine.

And why such an expense? I was invoiced for the past 8 days plus my planning session. I'm thinking of it as a free domestic ticket on Qantas as I'm using my Qantas frequent flyer card.

As I had the whole day, mum and I had a well overdue lunch with Susie from my Yahoo! days of yore. We chatted about the old gang and I felt connected to that long lost world, which was really nice.

My parent-teacher interview with Miss B was not at all surprising given that this is Alex's 2nd year in a row with her. When I told him about the meeting and asked him what she said, he got most of it. That's the way it should be: transparent communication.

Tonight Mum and I prepared a little presentation she's going to give in Remie's class tomorrow about "The Way Things Were", which is one of the social topics the kids in Year 1 have been learning about this term.  Mum is excited.  Very cute.

Tuesday 8 April 2014

Day 211: On time for the first time

It was Alex's school 3-6 cross country this morning. He was so looking forward to it - just to have it be finished. He hates running and won't train; he is his father's child in this regard. My mum and I got down to the beachfront at 9.30a for the start to show our support. Then we waited. As there was no communication regarding the order of the years, we watched and wondered. At 10.50a, the final girls' group started, leaving only the boys who turn 10 this year. I needed to leave by 11.10a to make my radiotherapy appointment at 11.40a. I rang the radiation oncology rooms and asked Ashley how far behind they were running. Imagine my surprise when she said, "Actually, Minerva is running a bit ahead of schedule." We decided to wait for Alex to start, with the thought that the worst thing that would happen would be that we would have to wait at hospital. So we saw Alex start, then raced to hospital. We were 7 minutes late and I was out in 20 minutes. Fastest yet. [I'm not surprised to reported that Alex was not fast, guessing he finished in the final 10 or so in his age group.]

On the way home we had a quick catch up with Sue over lunch. Their plans to move are coming together with a 6th May departure day. That will most certainly temper me looking forward to the end of my treatment on the 7th. I will be able to empathise with Remie over her friend, Hugo's departure sooner than anticipated.

The rest of the day was uneventful. I love those and need more of them. It's bed time now as I have a 7.10a appointment tomorrow (means departure by 6.30a) because Minerva is offline for regularly-scheduled maintenance from 7.30a.

Monday 7 April 2014

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.

Sunday 6 April 2014

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.

Saturday 5 April 2014

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.

Friday 4 April 2014

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.

Thursday 3 April 2014

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.

Wednesday 2 April 2014

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.

Tuesday 1 April 2014

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.