Thursday 27 November 2014

Day 449: 2 weeks on

Patience has never been my forte. As my cousin recently said, I'm "not one to let time do its work when I could be actively helping it". So I went to the gym today and made a bit of a more enthusiastic effort than I did on Monday. I know this must be week # 1 in comeback mode as the workouts are slow and limited and hard. I will persevere, though, as I know from experience that it gets easier if I do.

I am sore and tired today. I feel a bit better mentally than I have since surgery, but I'm physically exhausted. I know this is normal at this point so I'm happily going to bed very early tonight. It's a big weekend coming up so hopefully I can charge my batteries.

Tuesday 25 November 2014

Day 448: Healthy overall

Mel checked my fasting blood test result this morning and it  was perfectly normal at 4.1. Woohoo, no diabetes.

I had my quarterly check up with Dr. Fran this morning and all is good. Dr. Ben and I talked about lymphoedema (he mentioned that his physio is keen on laser for lymphoedema treatment and that I can purchase one myself), my recent surgery (I won't need any yearly tests going forward as I don't have anymore breast tissue; I'll only have exams), my talk with Dr. Rod about a possible oopherectomy (I said I wasn't going to do anything for about 6 months) and general treatment for oestrogen-fed cancer. There's a possibility that my ovaries are currently dormant after chemo and that my periods could return. If so, then removing my ovaries could have a greater impact on my menopause symptoms, but there's no guarantee.  There is an option to take a drug called Zoladex, which would mimic complete ovarian shut down. It costs about $330/ monthly injection.

We discussed possible metastasis (likely organs are liver, kidney and lung - and brain) and timeframe (oestogen-fed cancer like mine has a low-level recurrence rate but this stays fairly steady over time as opposed to dropping off like triple negative cancer).

When Dr. Fran came in she said that lymph node transplant and other more "progressive" treatments for lymphoedma were progressing exponentially so it'd be great to wait a few years.

I went from there to the breast care nurse to have a look at my mastectomy swelling and weeping. Michi was happy so I was happy.

I had a great catch up with Prue and missed a called from the school. Poor Alex waited in the sick bay for over an hour for me to get him. He complained of a sore head and tummy but seemed in good spirits. It was a quiet afternoon which made everyone happy.

Day 447: Fasting blood test

This morning I learned that I am definitely not at my best without my first-up coffee. I didn't miss the food as much as I missed the ritual - and likely the caffeine - of a coffee.

I got to the blood draw centre just after 8a and it was packed. Apparently it hadn't been that busy in months. It took about an hour before I was called. Then came the drama of trying to find a vein as chemo has hardened the key ones, and I am limited to only one arm. The poor woman, who did a few of my pre-chemo draws, ended up going in a vein on my hand. Yuck! I hate the hand, but she was good. I was glad to have that finished.

I had a great walk with Delia and Sonja, followed by a coffee. From there I went to see my psychologist, Jessica.  We had a good chat and she suggested a follow up in 3 months, so all is good.


Monday 24 November 2014

Day 446: Post-op hyperglycemia follow up

I dragged myself out of bed today and spent the day in a bit of a fog. I did get to the gym but I can honestly say that I was exhausted after 40 mins so I admitted defeat. I figured it would be good to get back to the routine, which it was. I'd just forgotten how slow the start of a comeback is.

I saw Dr. Mark (Dr. Karen was away) to follow up on my post-surgery high glucose read. He is sending me to do a fasting blood sugar test. He says there are 3 possible outcomes:
1. Everything is normal and the post-surgery high glucose was likely due to increased adrenalin caused by stress.
2. The reading is a bit high and I go back for a more in-depth blood glucose test.
3. The reading is very high and I am diagnosed with diabetes.
I will be very pissed off if it is #3.

I took Kirrily out for lunch to celebrate her birthday. It was a wonderful catch up.

I also made it to the last reading group in Remie's class for the year. I said a big thank you to the class for the beautiful "G well soon" cards they made while I was in hospital. When Remie brought them to hospital and showed them to me one by one I nearly cried.

I'm feeling really sore tonight. I'm hoping that it's just the result of over-doing it a bit. My nipple (I was about to write right nipple but I only have the right one) is "weeping" a bit in general and bleeding a bit tonight. Dr. Andrew didn't seem too worried about it, and neither did Dr. Mark, but it still makes me uneasy. I may try to get one of the breastcare nurses to look at when I'm at the hospital on Wednesday to see Dr. Fran.


Sunday 23 November 2014

Day 445: Hiding from the heat

It was predicted to be 39 degrees C today. Knowing what the heat does to my arm swelling, I spent the afternoon hiding indoors, which is not at all like me. Thankfully the heat never hit and my arm stayed the same. I feel a bit like I wasted a beautiful day, but a visit to the beach would've been unpleasant since I still shouldn't swim post-op and my sleeve/glove would've been very not. Ahh, the joys of this journey. At least I know that this, too, shall pass.

I did have the upside of seeing Remie's dance concert in which she did a tap dance (she's been doing tap and jazz) dressed as a pirate. She had a great time.

Nick and Alex spent last night camping locally at Manly Dam with Cubs. Remie and I were there for a bit yesterday but spent the night at home. Camping was not in my repertoire 10 days after reconstruction, and Remie decided she wasn't going to stay if I didn't. Instead we went out for sushi and she slept in her IKEA circus tent on the very old mattress from her cot. She was happy.  And I was happy sleeping in my own bed as comfortably as is possible at the moment on minimal pain killers.


Wednesday 19 November 2014

Day 441: Serial numbers and slow time

Upon awaking, I redeemed on of my "get a cup of coffee" certificates Alex had given me. It was a great way to start the day. Nick was on morning duty before his afternoon departure to Singapore, so I enjoyed moving slowly.  I'm definitely feeling better every day, though I am still very vague.

I had to drop Wanda (the Honda) in for a service, so Rach picked me up and we had a great morning of coffee, walking, juice and shopping. Melinda came by for a lovely visit this afternoon, and the rest of my day was admin.  I'm getting a few things done as I'm around the house lots at the moment.

The strange thing I did today was to file the card that has my details and the serial numbers and details of my implants "in case there is ever a recall".  I didn't know my girls would have their own ID card. I wonder if I should have one for my hip as well...

Deanna dropped by a yummy dinner that we all 3 demolished. I've enjoyed a very quiet house this evening and will drift off to sleep peacefully.

Tuesday 18 November 2014

Day 440: Peer support volunteering

I was awake early after not sleeping particularly well. I got moving and helped get the kids ready for Nick to take them to school. After a bit of admin, I headed to hospital for my final meeting of my first breast cancer seminar as a peer support volunteer. Today's topic was "Life after treatment" and we had a good session discussing fear, worries and experiences amongst the 8 of us (5 currently undergoing treatment). It reminded me of how uniquely isolating this journey is when it comes to the post-treatment adjustment to one's body's fallibility and what that means for making the most of the finite number of days left.

I popped into Redlands, where the kids will go to school next year, to drop off Remie's library books and pick up some info regarding Alex's activities. It was lovely to be greeted by so many familiar and warm faces.

I spent the afternoon on a lounge chair out back, talking to Mum and reading. I did indeed get some rest.

When Rosalie and the kids got home, Remie was very upset. I ast with her for a bit and coerced her into the bath, which calmed her down. We spent time reading this evening while the boys were at Cubs, which is always really nice. It was a great way to spend part of my limited time left.

Monday 17 November 2014

Day 439: Resting at home

I woke at 6.45a after a restless night to the kids chattering. Nick brought me a coffee and I started slowly as the kids played with Lego. Alex made porridge for brekkie and Rosalie came at 8a to help get the kids ready for school and walk them down.

I was around the house all day aside from a morning coffee outing to Little Manly with Rach. I sent my party invites and caught up on a few things before a long-overdue visit from Bill.  I tried to sleep after that, but the sound of concrete drilling wasn't really conducive. I pottered for most of the afternoon while Rosalie did pick up and sorted out Alex and food. My first driving effort went smoothly as I picked up Remie from dance.

I'm starting to get a bit more sore as I'm healing.  The tenderness of the drain sites is rapidly diminishing as the incisions are pinching more. All things considered I feel pretty good. My arm has returned to its pre-surgery size and me hand is the best it has looked since it blew up in August. I'd love for that to be a trend, but the predicted heat in the coming days is likely to cause it to swell again. Time will tell.

Sunday 16 November 2014

Day 438: Early release

I am home tonight after getting out of hospital this morning 2 days earlier than expected. It was so nice to have the day at home in fresh air. Now I just need to remember to rest.

I woke about 6a and went back to sleep until the catering woman brought in my brekkie at 7.30a. I savoured my final breakfast in bed, then packed and had a shower. Emma, my nurse, came in with 2 Endone in preparation for pulling the final drain.  She was back in 30 minutes to do the deed, reminding me to breathe the whole while. I've never had bamboo slowly shoved under my fingernails, but I imagine it would feel like that. Ouch.

Netty arrived at 9.30a as she'd offered to pick me up (and Remie had no interest in driving back to hospital!), and we ended up hanging out for an hour until my Endone script was filled and my paperwork was done.

Remie and Nick were excited to see us when we got home (Alex was out at a Cubs event). After lunch, Nick dropped Remie at Rach's for a play with M while he ran errands. Netty and I hung out and read the paper. Rach and Jen popped in for a visit and Jen even brought snacks and punch. What a great relaxing afternoon.

Nick, Remie, Alex and I went out to for dinner (they had planned it so I just went along) once Alex got home. It's an early night for all and some return to normalcy tomorrow, though we'll still rely on all the help we have lined up.

Saturday 15 November 2014

Day 437: 2 of 3 out

I woke about 7a after an awesome 10 hours of sleep. I took the opportunity to be lazy and stay in bed after brekkie. I got in the shower and had a walk about 9a, then talked to Mum, Sandra and Joe. I was still tired so I lay back in bed reading and dozing until an official-looking man popped in. John from pastoral care and I had a nice chat. He left saying that he'd been supposed to cheer me up but felt I'd helped him.

Nick and the kids arrived about 11.30a. Remie came with 20+ hand made "Get Well" cards from each if the kids in her class. They were so sweet they nearly made me cry. She was very proud of them and felt very pleased to be showing me. She also brought me a new Beanie Boo, Zigzag the zebra, to keep me company. Alex came with a puzzle for me to solve and a couple of card games.

We went to the cafe to get lunch for them then came back to my room to wait for my lunch, which included 2 lemon sorbets for the kids. They thought it was a great treat. After they'd finished, they pulled the curtain in front of the door to do a show. Shortly after they started, Dr. Andrew walked in.  He had no idea he'd come in the middle of a show and it was all quite entertaining.

He checked my drains and said 2 could come out. He also asked if I wanted to go home tomorrow or Monday, to which Alex immediately responded "Monday" (I think he didn't want to tidy his room). I said tomorrow so that'll be it. My lovely nurse, Emma, came in with 2 Endone to prepare me for the drain removal.

The kids' continued their show and we all had a good laugh. We then played Uno after which they departed (I think they were afraid of the drain removal). It was so good to have them here.

Emma was fantastic at pulling out the drains, but it was still terribly unpleasant. I flopped back into bed to read and lay still to keep the pain to a minimum. Ally popped in for a quick hello, which was a
lovely surprise. Then Archie came by for a visit and we had a great chat about how we old parents are going to need to lighten up and be flexible as our kids approach the teen years. Yikes! That makes drain removal seem easy.

Since then I've been lolling about, watching TV, going for a walk and reading. I'm tired after a not-very-busy day, so it'll be off to sleep soon.

Friday 14 November 2014

Day 436: Recovering nicely

I had a typical first night post-op: lots of checking in and waking up. I made a deal with my night nurse that if I didn't use my PCA he wouldn't come check on me every hour. I got 4.5 hours of uninterrupted sleep, which I thought was pretty good. He woke me about 6.15a to do checks and turned the "spotlight" over my bed on. When I protested, he called me a diva. I held on to my retort as I didn't think picking a fight with the nurse was a good idea. When he got uppity about my low blood pressure (89/48), I suggested he use the manual machine. When he wasn't happy with that, he finally looked at my chart to see the reduced parameters. Sheesh. He then did a finger prick test for my glucose level and all was fine.

After brekkie and FaceTime calls with Mum, Sandra and Joe, then Sue then Maegan, I got in the shower. Nick arrived just in time to hold my 3 drains - lucky him. Claire, the breast care nurse, dropped in to check on me and remind me to take it easy. Nick and I signed Alex up for next year's school sport and sorted a few other things before Ruth arrived with a yummy veggie juice. She and I had a quick walk after Nick headed to work then settled into the guest lounge where Ilona then Chris joined us. After they headed out and I had lunch, Deb popped in with another refreshing juice as it was 37 degrees out.  I was thankful to be in air conditioning for once.

I managed some rest when Deb left before Nick came in on his way home. He stayed for my dinner then went to put the kids to bed. The kids and Rosalie got Skype working so we had a good catch up.

My arm is still more swollen than before surgery, but it has come down quite a bit since yesterday.  I can't properly manage my massage due to the pain so I suppose I'm just going to have to wait.

Now I'm sitting out in the "Healing Garden" appreciating some fresh air. I think I'll read a bit and try to get to sleep early.

Thursday 13 November 2014

Day 435: Post-op update

I was whisked in to surgery at about 9.30a by a lovely woman called Maureen. She passed me over to a very efficient nurse who prepped things outside of the operating theatre. Dr. Jacques, the anaesthetist whose invoice I was asked to pay over the phone on Tuesday, introduced himself and got to work. He as initially going to put the cannula in my hand but found a vein elsewhere after my pleading. I reiterated my history of nausea post-op ("I am a recidivist chucker" is what I actually said) and asked if he could do his best to prevent it.

Out came Dr. Andrew who took photos, drew all over my right breast and asked if I had questions. Since I did not, I was wheeled in to theatre at 9.45a and asked to wiggle onto the bed. Dr. Jacques popped around to my side and said that he was giving me a glass of champagne to relax as he put a sedative into my cannula. Then it was lights out.

I was wheeled into recovery at 11.50a and came to very slowly. They'd put some Vaseline-type goop on my eyes in theatre which made waking up very strange. The man next to me was snoring very loudly so that helped me wake up.

I had a bit over an hour in recovery and got into my room about 1.15p to find Nick waiting.  I was a bit loopy and tired so dozed for a bit while he went to get lunch. Shortly thereafter the nurse came and helped me change into my own PJs as I was feeling remarkably well. I was hungry so ate 2 pieces of toast and had a cup of tea plus 2 biscuits - and I kept it all down! I haven't needed too much pain relief yet. We passed the afternoon chatting with Ruth, who arrived about 3p. We all noted the intense swelling in my arm around the elbow, which is my "problem area".  I changed my garments as the set I wore into theatre were stained with iodine. Nick left about 5p and Trent popped in about 6p for about 45 minutes before they left for dinner.

I enjoyed the alone time, watching the news and returning messages. I had some time to think about the results of the urine sample I did after eating when my wee was blood orange colour. As it was light orange yesterday, I mentioned it to the nurse so we did a sample. She came back telling me that it showed a high level of glucose, so we did a prick test. My glucose level was 12 (average is 4-8) and my lovely nurse, who is diabetic, measured 10.5. Apparently a high glucose level doesn't change the colour of one's wee. She told me not to worry, but just poked her head in and suggested I test it again tomorrow. Hmmmm.

It's 9.30p and it's been a big day. I'm going to drug up (via the button I press to get "pain relief" AKA fentanyl) and head off to sleep. Good night.

Wednesday 12 November 2014

Day 435: Next up

It's 9.05a and I'm gowned up and ready to go. Apparently I'm next up. It's all been very quick which is good for my mental state.

I had a lovely cuddle with Remie before showering, and Alex gave me Scruffy McDogson and his luggage (ID tag says "scruffymcdogson@dogmail.com.au). Chris picked me up at 7.15a to drive me and I had a lovely tour of the jacarandas on the way in.

At reception I said I was here to check in for my trip and asked if I could get an upgrade as I have quite a few frequent flyer miles. After I finished the admission paperwork, my "escort" came for me, saying she was taking me to the first class lounge. We went up to the surgery admissions area, where we waited for a bit then went through to do paperwork and get gowned up. Chris and I chatted, took photos and she packed up all my stuff.

Someone in surgical garb has just come in to do paperwork.  I'll report more post-op.

Day 434: 'Twas the night before reconstruction

I have to be at the hospital at 8.30a tomorrow for an approximate 10.30a surgery. It should take about 2 hours then I'll be in lala land. I'm packed and ready for Chris to pick me up at 7.15a. She rang this afternoon to say good luck and insisted on driving me when I said I was taking a taxi.

I'm really looking forward to getting my expander out. I hope Dr. Andrew can go directly to implant on the right side but we'll know tomorrow. At least this surgery won't have any of the worry of last year in terms of what might be discovered.

I went to the gym this morning and worked hard as I figure I'll be drugged up tomorrow so won't feel any soreness. One of the girls from the gym rang me tonight to wish me well for tomorrow which was lovely as she'd has to ask Phil, the owner, for my number. People can be so kind.

Monday 10 November 2014

Day 432: The effects of heat

It appears that the heat has a direct impact on the swelling of my arm. It is bigger today and was as well yesterday after the 34 degree C (100F) heat on Saturday. I also went to the gym this morning and, as it is lacking aircon, I got pretty hot.

With both of those events I broke Rule #1 of "Avoiding Swelling Resulting from Lymphoedema": Minimise the production of extra lymphatic fluid. Oops. It will be interesting to note how long it takes to go down.

My "problem area" is the under part of my forearm - the place to where fluid goes as a result of gravity when  I am sitting. I'm trying to get at least weekly laser treatments to try to break up the fibrotic tissue which would improve my fluid flow. I feel lucky that I have the means to do this as it's not covered by public or private health care.

I'm getting ready for my 5 days of breakfast in bed. It's strange to think that this next phase is soon underway.

Sunday 9 November 2014

Day 431: Questioning my next steps

We spent the weekend in Melbourne with Nick's family. It was great to catch up with the clan, including 92 year old Giddy and 1 year old Xavier. Nanna and Poppa stayed with us for the first few nights which was especially great for the kids. The visit was too short but it will just have to happen again before another year+ goes by.

My arm was none the worse after the flights but definitely suffered in the 34 degree heat on Saturday. I can guess that the summer heat I have always loved may be my nemesis this year. So sad.  Perhaps now is the time for skiing in Colorado in January.

Now that it's Only 4more sleeps until my surgery, I'm having a few questioning thoughts about whether I'm doing the right thing. Removing my other breast is not medically necessary and things can go wrong. Given that it's my fifth major surgery, I'm just hoping I recover as well as with the others. I actually thought of it like flying, but I digress.  I just have to remember that I'm in good hands and am doing this primarily for preventative reasons.

Tuesday 4 November 2014

Day 426: More lymphoedema improvement

After getting the kids off to school and doing my 45 minutes of yoga practice at home, I headed to the Mater for this week's seminar on lymphoedema.  I am now attending these weekly groups as both a peer volunteer and a patient. This one was particularly interesting given my current condition.  Dr. Theresa was an excellent presenter and made the information really accessible.

I was asked by one of the women currently going through chemo about my experience with the cold cap.  I told her that I was happy I'd done it but could understand her issues with the discomfort and pain.  The group moderator helped out by sharing her findings that it's a personal decision.

After a quick lunch with Ruth, I headed back to the hospital for my physio appointment with Carol.  She took my L-Dex (the measure of the amount of fluid in my arm) which was down to 38.5, nearly half of what it was back in August (normal is under 10).  At least it's moving in the right direction, which keeps me motivated to continue wearing my compression garments.  She also "lasered the hell" out of the fibrotic (hard) areas in order to break them up and increase lymph flow. As she said it's probably one of the best things for the fibrosis, I've booked in weekly for the next month.  It won't be cheap so fingers crossed it helps.

Monday 3 November 2014

Day 425: Cancer is no longer the focus

I remember people telling me that at some point, likely without me realising it, cancer would gradually stop being the focus of my life. I think I've nearly arrived there.

Apologies for the radio silence; I've been so busy catching up on things and living life that I've opted for sleep over writing. In the past 2 months, we've had both kids' birthdays, I'm attempting to de-clutter from the past year+ of dumping things and we're heading to Melbourne this weekend to see Nick's family for the first time in over a year. I did 2 ocean swims last week, the first in about 2 years. Very exciting!  The kids' schedules for the final term are manic and keeping on top of it all in is constant. Finally, I'm trying to get ahead of the curve with Christmas only 7ish weeks away.

This is all about to change, at least temporarily, when I go into the hospital in 9 days. I will again be a cancer patient, but at least this time my stay is for cosmetic purposes.  Ok, I have also had my daily reminder of my cancer as I wear my lymphoedema compression garments and get treatment ( either laser or massage) every other week. And sure, my hair is short, but I love it. I am looking forward to getting through this step of reconstruction and resuming the path to moving cancer to the sidelines.