Day 459: Last pre-holiday lymphoedema laser treatment

Today I had my seventh lymphoedema laser treatment since the beginning of October. I was told that regular laser can help break down the fibrosis that is occurring in my forearm around my elbow. Happily neither the fibrosis nor the laser are remotely painful. Unhappily, the treatment takes time and costs money. 

Carol thinks my arm has done well not to balloon in our recent hot and humid weather, especially since I had my sleeve off for a bit at the beach on Sunday. My L-Dex was 40, so at least it's consistent with my last few measurements. It'd be great to see it decrease, but I doubt that's going to happen before summer is over. 

I might try to get back to Mt. Wilga after the holidays to access their hospital-grade laser. It's a tough call, though, as that takes 3 hours out of my day. I'll see how I go over the next few weeks and figure it out. 

Day 455: Final surgeon check-up

I had my second check up with Dr. Andrew today, 3 weeks after my reconstruction. He was pleased with everything, from the way the wounds have healed to the softness and skin condition of my radiated left breast. I asked when I could resume specific activities (swimming and yoga). His reply was "You are free to do what you like (within the limitations of any pain or discomfort) and enjoy Christmas".  I'm happy with that. My next appointment us the end of February.  I'm hoping for dull and boring recovery between now and then.

Day 453: Lymphoedema update

I had my weekly lymphoedema treatment today with Carol, one of the lymphoedema physios at the hospital. Just robe clear, I have chosen to do weekly treatments in the hopes of getting this condition more under control. My treatments consist of either laser therapy to break up the fibrotic tissue that s ems to be developing just below my outer elbow or a lymphatic drainage massage. Today it was the former, which takes roughly an hour. There's no pain or discomfort; it is just time-consuming.

The good news is that my arm is slowly getting less swollen. At the moment it even looks fairly normal aside from the elbow. My L-Dex measure (a bio-impedance system that measures the amount of fluid) was down to 37 from my initial presentation of 77 and aiming for a normal range of -10 to +10 my pre-lymphoedma measure was -0.1).

The big question I am constantly asked is "how long do you have to wear the garments?"  Unfortunately, there is no answer. The advice I've been given fro all who treat me is to wear them until I've had a minimum of 6 months without swelling. Dr. Theresa said she'd like to see my L-Dex get to a maximum of 20 before we put in any criteria pertaining to swelling. Until then, I will wash and wear the fetching sleeve and glove daily and my quilted sleeve at night (to keep the fibrosis at bay).

Day 452: The Post-treatment party - finally

The day started bright and sunny - perfect for a party of over 100 kids and adults to celebrate the end of my treatment and return to a life free of appointments and trips to Medicare to submit claims.

As with any party, the prep work took time. Remie, Nick and I (Alex was cranky and stayed at home, where he made his own scrambled egg brekkie) went down to Little Manly at 7.30a to put up our marquee so we. Would have some space set aside if the beach got really busy. There were some other guys setting up as well and they came over to make sure it was going to work for all. Lovely.  Nick then did all the beverage and ice shopping (Rosalie had done the other stuff on Thursday) while Rosalie and I cut watermelon and prepped supplies.  From 2.30p Nick loaded and unloaded the car multiple times, ferrying everything the block and a half down the hill. The 2 fabulous girls we'd been recommended by one of our sitters showed up and took over all the prying and serving. 

Guests arrived throughout the afternoon. The kids played down on the beach while we were up on the grass. There was drink and food, and then about 5p the wonderful folks at the Little Manly Kiosk brought out the serious food. People who had been so actively involved in supporting us were there again, but this time to celebrate the fact the it's in the past. I gave a little "thank you" speech and Daryl took pictures. It was like having a big hug all afternoon. 

We did fall victim to our tropical weather as the lightening started and the rain came down about 6.20p. It cleared the beach so we had it to ourselves. We ended up wrapping up right when we wanted around 7p, which was probably good for everyone's heads. 

It's hard to believe that the party I first dreamed up at the start has finally happened.  It provided great closure and another opportunity to connect with our wonderful community. 

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Day 419: Fat arm getting smaller and plan for reconstruction

I have spent the last month + taking the family back to Hamilton Island (late Sept - early Oct), learning to wear my fetching compression garments (sleeve and glove) daily plus my Caresia (quilt-like sleeve designed to break up the fibrosis in my arm) every night and getting massage and laser on my arm, and investigating reconstruction options.  I'm also trying to rebuild strength, get the kids to their activities and appointments and get some rest.  As you'd imagine, the latter is not really happening.

My lymphoedema seems to be gradually improving.  My arm circumfrence has decreased by 3cm in the past 5 weeks and the bio-impedence measure of fluids has come down from 72 to 50.5 (normal is between -10 to +10). To get it under control, i need to do my daily routine as per above, get a lymphatic drainage massage at least once/month and get the hard area around my elbow lasered at least once/month.  I put the garments on when I first get up and try not to think about them.  They are unsightly and hot, but they are doing their job.  The other appointments are time-consuming and cost about $250/month, not reimbursable by Medicare or private health.  Drag.  I am soldiering on in the hopes of consistent improvement.

When I saw Dr. Andrew in Sept, he suggested I seriously consider a tirrue reconstruction as it might improve my lymphoedema, so I had consults with 2 different plastic surgeons.  I learned that it's a massive operation to take the tummy tissue and move it up to rebuild a breast (I already knew that and thus has no interest), it's a 6 week - 3 month recovery and I only have enough tissue for one breast.  I considered the benefits of the possibility (no guarantee) of improving my arm swelling with the introduction of fresh tissue and the transplant of the superficial lymph nodes from my groin as a part of the operation.  Then I decided that I don't want another major surgery at this point in time.

After weighting my options, I decided to go with my original plan to go perky.  On Tuesday Dr. Andrew booked me in for a right mastectomy and implant reconstruction on both sides.  He will remove the expander on the left (which needs to be done soon anyway and it driving me nuts) and try to go directly to implant on the right.  If he can't, he'll do an expander.  I'm going in on 13th November (before summer and Xmas and before the kids move to a school that requires a drive) and will be in for at least 5 days and maybe more, depending on how quickly the fluid drains.  Onward and upward!

Day 380: A day without an appointment

I had a lovely day all around: the sun was shining, the kids were good, I had a good swim (second day of 1.2k) and, while the kids were at their holiday programs (gymnastics for Remie and kayaking for Alex) I got organised for our departure to Hamilton Island.  I only had one phone call that had to do with my cancer, and it was simply a heads up to Mt. Wilga that I requested to have my garments shipped to them as I'm away until next Friday.  Easy.

I dropped Alex at his kayaking day after picking up his mate, Tom.  They had a great day as there were only 3 kids today.  I picked up the boys and they hung out here for an hour until Lucy arrived.

When I dropped Remie and her 2 friends at gymnastics, they were excited.  I would've been happy to stay if I were a youngster as the facility is great.  They, too, had a great day.

After dinner, Remie decided that she wanted to set her own record for getting showered and ready to read.  8 minutes was her time.  After months of her taking forever to do exactly this, it just goes to show she can do things if she wants.

Day 379: Agreeable

This was one of those days that should be noted in the diary for its ease.  Everything seemed to go  very agreeably, from the kids to making an appointment with Dr. Andrew to discuss reconstruction options (his gruff receptionist wasn't there) to using up the food in the fridge to taking Remie to the library.  None of it was exceptionally exciting, but it was great because I didn't feel any of the struggle that I have for the past month or so.

I had a good appointment with Jessica.  I mentioned that I am slowly accepting my lymphoedema and feel better for not fighting against it so much. We talked further about finding post-treatment anchor points and thinking about how I want to go forward in terms of what I want to be and do.

Steph took the kids for the morning so I had a great swim in the sun.  For the first time ever, I swam more than 1km: I added 200m (20%) and felt good.  Very exciting.

I coughed up another $600 for my new prescription custom sleeve and glove.  Mt. Wilga was able to get me one free setfrom Smith and Nephew as a compensation for the garments that were presecribed at the Mater.  That is a relief.

Tomorrow the kids are at activities so I can pack for Thursday's departure to Hamilton Island and swim again.  I'll also probably catch up on a few things that have been on my growing list.  It will be the first day in ages that I'm not scheduled to meet with or talk to anyone about my cancer.

Day 378: Another day, another appointment

It was the first day of the Spring school holidays and the kids and I had nothing planned for the first time in ages. I did, however, need to get a script for antibiotics for my upcoming trip in case I get an infection in my arm that could turn to cellulitis.

After Alex made brekkie (scrambled eggs, toast and a pineapple-strawberry iced wrap), I made an appoitment with Dr. Mark at 10a as Dr. Karen is on holiday. He was great, providing advice on the heat that could cause increased swelling (get in the water to stay cool) and happily writing The referrals to the doctors and physios I need to see for reconstruction investigation and lymphoedema treatment. The kids both read the books they'd brought and were excellent.

We spent most of the day pottering around home. The kids played together with Lego for hours. We went down to Little Manly in the afternoon to get some sun. Alex flew his balsa airplane while Remie and I played in the sand. She asked me to build some castles and I realised that my "garments" are going to make the summer a bit more challenging.

Day 377: "Life After Breast Cancer"

That was the title of the presentations held at the Poche Centre this morning. The program consisted of the resident specialists talking about subjects including "medical aftershocks", psychological adjustments, reconstruction options, self esteem and sexuality, and nutrition. I'd asked Ruth to be my support person as I thought she could help me navigate the information and decide what I most need to take on board to continue my journey of recovery.

There was so much information that I am still a bit overwhelmed. None of the content was surprising but I was somewhat shocked at how well I could relate to many things that were said.  I swear that during my 7 week US trip I never saw this massive adjustment period coming. A bit naive perhaps? In any case, here I am trying to digest my new post-treatment world, and it's not going as quickly as I'd hoped. Perhaps this is my reality to provide me the opportunity to learn some patience...

Day 376: Your thoughts are not facts

This us what Rebecca told Remie in our morning session with her.  We were talking about Remie's fears that my arm could blow up and fall off and I would die. Rebecca's example of her thinking a pink elephant would fly into the room really made the point for Remie. She explained about the regular check ups and trips to hospital now and how that just means people are looking after me.

Remie said that it was a helpful session and that she would like to go back again. That made it worth the nearly 2 hours out of a Saturday.

Day 375: Cranky

I am totally over lymphoedema and it's time-consuming and unwieldy bandaging.  I don't want to have to wear custom compression garments every day. They are just awful. I'm annoyed that I have to get to the GP to get a script for Keflex in case I get cellulitis. The problem is, this is only the beginning and there is no end. At least not for now.  Time will tell how my body reacts to my treatment and how quickly it lays down new pathways to drain the fluid build up.

I woke up to Remie demanding things then screaming for ages. It was a bit stressful. Then I stuffed up my Mt. Wilga timetable and missed by 11.30a gym session, so I was rescheduled for 1.30p mindfulness, which was actually exactly what I needed. This left me with an hour to kill, so I checked out the Hornsby shopping centre.

My physio this afternoon, whose name I didn't get, was wonderful. She took my arm measurements and ran my L-Dex. My arm was down overall but my L-Dex was up, which made sense given that my fibrotic tissue had softened and the fluid amount was therefore greater, but more freely flowing.

She brought in my Caresia, a quilt-like arm sleeve for me to wear at night to soften my tissue further. We had a look at the garments I have, and she called in a colleague. They decided that the seam at the wrist of my sleeve needed to be picked to stop it from constricting.  I shared my fears about flying next week, and we discussed my options. I practiced some self-bandaging so feel confident I can do that. She did walk me through the worse case, which is that my arm and hand balloon. I would then just do my best massaging and bandaging while I'm away and get myself back to Mt. Wilga upon my return. I left feeling empowered but also very cranky that I have to deal with this.

I'm feeling very alone on this part of the journey. Everyone around me is concerned with life, and I'm having occasional "what if" thoughts of metastasis. I am in a very different headspace and am struggling with connection points at the moment.

My day ended with more screaming from Remie and a failed attempt to talk to Nick about this stuff. "It's been a terrible, horrible, very bad, no good day. Some days are like that.  Even in Australia."

Day 374: New measurements

After drop off, I caught up with Gail for a walk. She listened to me go on about my lymphoedema and was wonderfully compassionate. We talked fear, energy levels and how to live life in a meaningful way when you've been given the cancer wake-up call. It was comforting to be with someone else who is in the same boat.

At the hospital, I had a brief but very useful chat with Lena, another Manly woman (who is friends of one of my friends) who is dealing with this same condition. We were discussing reconstruction, and she reminded me I could just do implants now and wait a few years to consider a tissue reconstruction.

My first session was hydro, so I did my exercises and rode around on the noodle in the 33C water. Not a bad way to spend 30 minutes.

Andrea was my physio, and she put me straight under the laser for my side and forearm. Then she did my measurement for my garments.  Even after intensive treatment, the sleeve prescribed last month is too small. She rang the garment rep and left a voice mail explaining the situation and asking for a pricing concession. She'll let me know.

Dr. Mackie came to check on me. I thanked her and we talked about the empowerment that I've gotten out of my time.  I talked with Andrea's boss on the way out and said I am happy to be a case study as my experience has been good.

Day 373: 7th birthday

7 years ago today I was at a different hospital, one just up the street from home.  The roperating theatre was equally as cold when I was getting my spinal block as today's heater-less room. While today's hospital visit is part of a much longer treatment, That Monday had a distinct outcome: welcome Remie!

We were up just past 6a opening presents before I had to leave. She was very excited and happy with all her gifts.

My first session was with Elena, the dietician. She was great at recapping the basics plus giving me ideas specifically for fuelling for exercise. She also reviewed tips for portion-sizing, proper eating (sit down and chew slowly) and specific product selection. It wasn't anything earth shattering but good to go over.

Sarah was my physio, and she did my measurements (all down) and put me under the laser in order to further reduce the fibrosis and thus increase lymph flow.  She then bandaged me and sent me on my way.

After a great catch up walk with Steph, I bought ice blocks and brought them into Remie's class. We all went outside, the kids sang and then Remie helped me hand out the ice blocks. Exciting for her.

We had a family birthday dinner at Hugo's. Remie was exhausted but settled down once we got to the restaurant. The pizza was great and dessert even had a sparkler in it. That's what big girls get.

Day 371: Learning

I had a different physio at Mt. Wilga today and I learned lots from her. She thinks that, given the fibrosis/tissue change in my forearm, I likely had lymphatic system issues months before my arm swelled. Apparently it takes 6 months for tissue changes to occur (get worse or get better), so her advice was to be very diligent with my care (self-massage and wearing compression garments as well as noticing what happens during exercise and in heat) and take this journey initially in a 6 month chunk. It's early days for me, with my body still recovering from the whole treatment, so she suggested I take it easy and watch what happens in the next year.

In my gym sessions I've learned to watch exertion rate and fatigue as they can cause fluid build up. I've also gotten e few specific exercises that might help.

Crystal popped in this morning with her hairdressing scissors and removed my "wings". Amen. I forgot how annoying it is to grow out short hair and I'm only waiting for the bit I lost to catch up to the rest.

Day 369: Party day

The morning started with Nick thinking he had booked the scout hall for Sunday instead of Saturday. Thankfully he'd done Saturday. After a morning of errands to get the disco ball, balloons and a few other items, it was time for lunch then for Remie to head to her classmates party leaving the 3 of us to set up hers. Nick and Alex were decorating legends.

I picked up Remie and 2 friends and brought them to the party just in time. Miss Emily was there and got the kids straight into the mask-making craft. Then it was dance time. Some of the kids were so tired from the party before that they just flopped on the couches like lion cubs. Just before cake time, the kids performed for the parents the dance they'd been practicing. The cake was a hit, and all left exhausted. Remie had a great time, loved all her presents (she opened them by herself and kept track of them) and was generally quite pleased.

Nick and I were exhausted but headed out to John's 41sy birthday party in our pirate-themed outfits as instructed. One we had a bit of food, drink and rest on chairs, we perked up and had a good night.

Day 370: Some things stay the same

I had a lovely walk in the sunshine along the beach with Rach this morning. We got an excellent piccolo (up there with the cafe at Harris Farm) from the coffee man outside Le Kiosk at Shelley Beach. We solved all the world's problems as we tend to do

When she had to dash I grabbed at table at Whitewater for brekkie with my family, who arrived about 10 minutes later. The kids ordered a second corse as they were starving. It certainly wasn't our most inexpensive breakfast but at least it was good.

From there we went across the street to the beach and parked ourselves at South Steyne. It was a beautiful day (though the water is still chilly) and Nick and I enjoyed a chat while the kids played in the sand and incoming tide. I couldn't go in the water or muck in the sand with my bandages, but it was so nice to be there. That little stretch of beach has seen me in various stages of health and fitness over the past 10 years (post c-sections, pre- and post-hip replacement), during chemo and now. Wow. It's so nice to be able to sit in the sun and watch the waves if nothing else.

The rest of the day was around the house. The kids played but were both tired. Hopefully all will have a restful night. I am looking forward to a change of bandages tomorrow.

Day 368: Party prep

After dropping the kids at school I did the  food shopping for Remie's party tomorrow. I can't believe she's going to be 7 inextricably week!

I talked to mum on the way to the clinic. It's been a good opportunity to stay in touch. I tried to work a bit harder at the gym and even convinced Bridget to let me go on the bike for 10 mins. Woohoo.

Andrea was my physio again today. She was very excited to unwrap my bandages as there was a big improvement in my arm overall. She did more massage and laser, then wrapped again for the weekend. I'm just pleased it's coming down and I'm learning more about how my body works to make it better.

After dinner was cake icing.  Thanks to Gloria's gorgeous cake toppers and Emma's baking efforts my job was easy. A few more treats got made and we're as ready as we'll be for 18 7-year-olds.

Day 367: Sunshine

I had to drop off my car at the smash repairs this morning so they could fix the damage from when we got rear ended a few weeks ago. It was such a beautiful day that I walked the 6+ kms home. It felt great to get some exercise after all the sitting in the car.

Driving in Errol with the top down in the sunshine is certainly a nice way to make the 45+ minute commute to Mt. Wilga enjoyable. My first session today was hydrotherapy. The pool is as warm as a bath. I was in with 4-6 other women (at least 20 years older than I am) and we all did our own program. It wasn't really a workout, but anything that helps "stimulate my lymphatic system" can't be bad.

My next session was physio with Andrea, the woman with whom I met on my consult and who is a wealth of information. She did a massage and used the hand-held laser as well. She noted that 2 other key areas, my neck and abdomen, are "congested". She used the laser on my abdomen to increase the lymph flow. She also used it on my "medial pocket" (around my elbow).

She told me I am doing everything right, and my swelling is simply the result of a traumatised lymphatic system. My arm is not the problem, she said; the arm is the symptom of a malfunctioning system. Looking at it that way puts a new spin on it. She bandaged me with the hopes of more reduction in my hand.

I got home to the kids finishing dinner and Emma and her mum, who is visiting from the UK, beavering away in the kitchen. It was lovely mayhem as Angie and the kids made muffins for Remie's party on Saturday and Rosalie popped in to borrow a can of tuna for her recipe. It was a very welcoming return home.

Day 366: One year on

A year ago my life changed forever with my diagnosis. I remember sitting in Dr. Karen's office clutching Swoops, Remie's Beanie Boo and our "medical owl". I remember hearing that I had cancer, and hearing her talk briefly about DCIS. I sort of understood what she way saying as I'd done a bit of research after her office had rung me the day before and said that she wanted to see me, which I knew wasn't good news 4 days after my biopsy.  I remember it all seeming a bit far away. Poor Nick received broken texts from me and, working out that the news wasn't good, beat me home.  I sobbed on his shoulder and to Sandy on the phone. I rang Alison to find out more about Lisa's experience.  Then the afternoon progressed as normal and Steph and I drank a bottle of wine each and talked about the path to come while Nick was out.  Thankfully we didn't know the half of it.

I can honestly say that, despite all the challenges, I've gotten more out of the past year than I've lost:
1. I've learned that my family can help one another to get through a series of very scary and unpleasant situations. We can cuddle and listen when one of us is sad or frightened and still laugh and enjoy life.
2. I truly understand that my husband would do anything for me. Although he may not be the best communicator or great with emotions, he demonstrated his phenomenal caring and concern when I needed it most.
3. I've found that I have an amazingly supportive community who are happy to go out of their way to help.
4. I realised that my "little sister", with whom I don't always see eye-to-eye, is truly one of the most caring and thoughtful people I know. She provided the most unbelievable support from across the world in the form of daily check-in texts and general words and gifts.
5. I appreciate that the bonds I have with friends and family who live around the world can provide strength across physical distance. Through reconnecting with old friends and family I have felt more grounded.
6.  I've gained an invaluable perspective on all sorts of things. I understand that health and love are more important than anything else. I don't sweat the small stuff when I can help it (I'm still human).
7. I discovered an amazing well of strength within myself. I now feel confidant that I can tackle most anything.
8.  I cemented my life-long belief that "it's not what happens; it's how you respond to it".
9. I remember that it's not what I am on the outside that counts; it's who I am on the inside that matters.
10. I am aware that my time on this planet has an end date and I need to try to enjoy every day and make it count.

I'm glad to be out of the treatment tunnel and sad to be in the lymphoedema one, but despite this diversion, I hope the scary stuff has passed. Time will tell.

In other news, I had a lovely "spa day" at Mt. Wilga consisting of gym (physio), pool (hydro therapy), and massage (followed by bandaging). My arm has gone down about 25%, so fingers crossed the reduction continues and then stays.

Day 365: Expectations

If the message post-mastectomy/axillary clearance (lymph node removal) had been "you are highly likely to get lymphoedema and will be lucky if you don't", I think I would have been more able to cope. Had my " multi-disciplinary team" been more responsive to my first signs, I might have been less frustrated.

Unfortunately, that was not the case. I'm doing my best to deal with it and get help. Today I made an effort to set my expectations realistically. Sarah, my physio at Mt. Wilga, said that she's hoping for a 50% reduction in arm size by the end of my program. She's less concerned with my L-Dex, with her focus on softening the tissue and getting the fluid out. She used the laser again today and did massage  before bandaging.

I also saw Jonathan, a psychology team member. He listened to my whinging and told me it's ok to be angry and sad; after all, I have ended up with this very annoying thing I never wanted. My m.o. of making clear plans and problem solving might just lead to further struggle from me.

I had a nice walk with Delia once I got home and before pick up. The weather was beautiful and it was good to be moving and not sitting in a car.

As I watched Remie reading in bed with her little reading light and fairy lights on, I thought about how unfair it is for her to have to deal with my cancer. She's been so brave; I hope that stays with her.

Nick made my sandwich for lunch for tomorrow as cutting is not easy. He's been great this week, doing mornings and being involved at school. While it's good for all, I know it's not easy for him to be doing my part of the divided "labour". Life sure does get flipped on its head with health issues.

Day 364: First day at the lymphoedema clinic

I woke up to sunshine (and a grumpy Remie who was cross at having gone to bed before 7p last night) and headed off in Errol the Eoas with the top down just after 7.30a for my 9.10a check in. The drive took 1hr 10 mins so I even had time for a coffee.

Day patient check in consisted of all sorts of papers to sign, but it was quick. I headed across to the rehab building and checked in to the lymphoedema clinic just as my physio, Sarah, was arriving. We went down the hall into a treatment room and began filling out forms. She did my L-Dex (unchanged from 3 1/2 weeks ago, meaning the excess fluid is still in my arm) and took measurements of both arms (my left is about 2cm/1inch bigger than my right at the moment).  We then went down the hall to another treatment room where she used a hospital-grade laser on my arm to soften the fibrotic area in my forearm (the area where the tissue has started to turn hard). Finally, she bandaged my arm, which is apparently the best way to encourage reduction in size.

While I was left in the room with the laser going to work and me wearing glasses, I decided that this whole condition really needs a copywriter. Words like "lymph", "oedema", "garments" and "fibrosis" are not at all palatable. I really see room for improvement in the language if any real fundraising is to be done.

My second session was woke Luke, an exercise physio. He filled out a few forms then talked me through the theory behind exercise and lymphoedema. The good news is that it is encouraged as muscle movement helps the lymphatic system push the fluid out. Repetitive movements like boxing) are to be avoided, as is intense exercise, as both of these contribute to the increase of fluid (via increased blood flow) in the body. Heat is also a known contributor to increased fluid, so exercise in air con is recommended. All of this impacts my lifestyle, so I have to see what happens.

I zipped home, grabbed lunch and managed to get to Remie's class for reading groups. The afternoon held lots of help from Alex with dinner and laundry. Remie even packed the dishwasher after dinner. Nick checked the warning light that was on in Errol, so now I'm all set to do it again tomorrow.

Day 363: Life goes on

This felt like the first "normal" weekend I've had since returning home 5 weeks ago. Perhaps I'm slowly settling in to my life as it is and not fighting against it as much.

Yesterday, amongst all my normal things (swimming with Jen, shopping with the kids for Remie's party, catching up with friends in the afternoon), I went to see a kinesiologist at Ruth's recommendation. She suggested David to help me come to terms with my lymphoedema specifically and cancer issues in general.

David spent 90 minutes with me, working primarily on my "energy" as Mel is looking after me from a naturopath perspective and the folks at Mt. Wilga will look after my body. I'm not sure exactly what he did, but I have the phrase "I will thrive" stuck in my head, not "I will not make it", which apparently was there before.

Today we took Nick put for Fathers Day breakfast then gave him a leave pass to Bunning's (Australia's Home Depot). We had a great family bike ride in the afternoon; Remie impressed me with her riding and was so proud of it.

I' start at Mt. Wilga tomorrow. While I'm looking forward to learning and getting treated, I'm not excited about facing up to my condition and the implications it has on my lifestyle.

Day 361: Contemplations

At nearly the end of my massage by Erika today, the building's fire alarm went off. We grabbed our things and headed to the stairs. When we entered the stairwell, we were greeted by a line of people streaming down from the 2 floors above. In the time it took to descend the 4 floors, I found myself thinking of what the scene in the stairwells might have been like in the World Trade Towers nearly 13 years ago. We walked calmly today; the people there would have been frightened and confused. It happened all so quickly that there would've been minimal time to think before acting. And it would have been over relatively quickly.

Later in the day, I found myself reflecting on how different cancer is to an emergency like the World Trade Centre. I have lots of time to educate myself and think about the possible options.im doing my best to use the time I have wisely rather than worrying too much. I can make long-lasting choices (diet, lifestyle, environment) that might help prevent a recurrence.

I had a wonderful lunch with Louise.  Our conversation covered the usual catch up, and we also tackled learning one's body's reaction to things and adapting accordingly. I sense my self-awareness has benefitted from the past year and will continue to grow on my lymphoedema journey.

Day 360: Mind and body

The highlight of today was Remie's appointment with Robin, one of the counselors she'd seen earlier this year.  I told Remie we were going to see Robin as she'd be able to make the hard stuff we've been going through a bit easier.  When we arrived, I briefed Robin in private regarding Remie's recent challenges, then they went off to talk.  When they called me in, they showed me these:

I thought it was fabulous that Remie was able to articulate how her frustration and anger builds and possible ways to diffuse it.  Now let's see if that translates to daily behaviour.

I had a fabulous swim this morning and am actually enjoying it now that I'm not fighting against it so much.  I'm finding that being in the water is great as my arm feels normal there.

My naturopath consult with Mel was very helpful.  We reviewed my supplements and did my body analysis.  Based on my body composition (fat, muscle mass, hydration, etc) I have the relative age of a 33 year old.  Woo hoo!  We also discussed an anti-inflammatory diet to help prevent recurrence.  Happily, I'm mostly there with the exception being primarily alcohol (aiming for 5 standard drinks per week!) and sugar. Now there's a challenge.

Day 359: Calm

This is the second day in a row that Remie has not screamed at me.  I am so much less tense. I can imagine that parenting might not always feel like a battle if both children were usually not belligerent. I shall simply hold out hope that this is the start of a new beginning.

Alex received an award at assembly today "for always giving 100% to everything he does". That is gold. As another parent said, it's better than an Oscar. He was very pleased.

I popped into Nadia's on my way to see the counsellor at the school the kids will go to next year. She helped me get clear on my request for help for Remie in her upcoming school transition given all the uncertainties of the past year.

Wendy, the counsellor, was easy to talk with. She clearly has a wrath of experience and is interested in helping Remie. We have planned for Remie to go talk to her at the start of next term, with the aim of having subsequent discussions prior to the end of the school year. This will ideally give Remie a consistent person outside of home with whom to discuss her concerns.

I'm also thinking she'll have a few sessions, ideally regular (but not for 2.5 more weeks) with Rebecca, whom she's seem before and who has specific experience with families dealing with cancer. We'll go tomorrow back to Robin as well.  I figure Remie will decide who she feels comfortable with.

I feel like things are generally a bit calmer today. Perhaps I am, as someone suggested, undergoing a bit of a post-treatment transformation, bit by bit, and one of the tough phases is slowly passing. Perhaps I'm slowly accepting my new challenges and fighting it all a bit less. Perhaps it's the absence of seeing a doctor or getting treatment for the whole week so far. In any case, it's a much more pleasant state to be in.

Day 358: Positive

This is the first day in ages that Remie didn't have a tantrum at me. She did have one about a drawing she'd done, but it passed quickly.  What a relief.

I had a great workout after dropping the kids. It is the first time since returning from holidays 4+ weeks ago that I felt like I was gaining strength.

I received my schedule from Mt. Wilga today to start next Monday and am cautiously optimistic about the program. I'll keep my expectations fairly low but hope they can help me adjust to this new part of my life.

My session with Jessica this afternoon was very insightful. She works with people affected by cancer and is part of the practice that was referred by my breast care nurses. I went to her to get some help in coping with my lymphoedema plus challenging child plus hovering thoughts of recurrence. She was brilliant and really helped me put my issues into perspective. She assured me that what I'm feeling is totally normal as most cancer survivors don't slide back into the life they had pre-diagnosis now that there are different worries. I was reassured and left with a tool to help me cope and re-balance.

I have a meeting tomorrow with the counsellor at the school the kids will go to next year. I'd asked the director if we might be able to work something out to help Remie with her transition and general anxiety. I'm again cautiously optimistic that it could help Remie.

Day 357: Yo-yo kid

Remie came into me at 6.30a this morning, woke me up and grumped about her stick I took away yesterday during her tantrum. After nearly 10 minutes of her complaining, I asked her to leave. It took a few attempts but she finally did. When she came back 30 minutes later she was perfectly pleasant. She is Dr. Jekyll and Mr. Hyde and speed at the moment.

I had a fabulous swim in the sunshine after drop off. I talked to Simon, the guy who runs the weekday squads, about swimming with the group. I told him my background and he did a quick assessment while I did my laps and have me the ok. It's in my diary to start in October after the school holidays.

Alex helped me make dinner while Remie was at dance. He is growing up so quickly and is enjoying his status of big kid.

After a performance and a few tantrums (ok, there was lice combing involved), Remie happily went to sleep. Her yo-yo mood swings must be exhausting her like they are me.

Day 356: Ups and downs

I woke up at 1.30a with my wrapped hand hurting and my thumb tingling. As much as I wanted to keep the bandages on to possibly reduce the swelling, I thought the pain meant I should unwrap my arm and hand. I slept fitfully after, with my thumb feeling strange until later in the day.

I put my sleeve and glove on this morning when I was getting dressed to try to make it a part of my daily routine as I was told " it doesn't do any good if it's not on". The sleeve still seems to pinch at my wrist, as does the glove, so I'm not sure they are the best. Pity they cost about $450

The kids and I spent the morning at the beach with some of Remie's classmates while Nick went for a bike ride. The weather was perfect and the girls stopped down to their undies to play in the water as I hadn't brought swimmer. The lovely few hours turned foul when it was time to go and Remie screamed at me (and hit me) all the way home because I didn't do what she wanted in terms of helping her. I was in quite a bad mood at the end of it, at which point she fell apart sobbing and saying she was useless. We talked for a bit and she seemed to settle, but that's heavy stuff.

We spent the afternoon at Little Manly for lunch and hanging out with Roz and Simon and the kids. It was a most enjoyable way to spend a beautiful day - the last of winter at that.

There was more screaming from Remie before dinner, so I ran off to my room. She found me later sobbing, which prompted another chat about being brave and positive. I feel so very sad that she is scared and angry and I can't get help for her. I'm going to try another avenue tomorrow as it seems we need a bit more support.

Day 355: Slowing down

Andrea, the physiotherapist at the Mt. Wilga lymphoedema clinic, told me I needed to slow down, reduce stress and relax to give my body time to focus on rebalancing. I did just that today.

After a swim and brekkie with Rach, Jenny and Ally, I saw Erika for a massage and wrapping.  This time she bandaged over my glove, so I'm curious to see the results.

The weather was wet and cool, so we were all at home from lunch for the rest of the day. The kids played, Nick pottered in his workshop and I read and napped.  It was very relaxed. Perhaps more "quiet time" will be part of the changes I'll end up making to deal with my new world order.

Day 354: Support

I'm trying to listen to myself and respond to what I need now. I think this may be a sigh that I'm finally maturing.

First off, I worked out that if I'm going to swim as I've been directed to time and time again, I need to meet a buddy. Rachel was my girl today. It was dumping with rain but she ran in, so I followed. It was lovely as the water temp was twice the air temp 26 v. 13)!  The coffee and chat afterwards helped.

Secondly, I'm struggling with terrible Achilles and general tightness from my months of no regular exercise routine. Enter Renee, my awesome massage therapist whom I've known for nearly 4 years. Her massages hurt but I always feel infinitely better afterwards.

Finally, touching base again with key support people is helping me get grounded after our trip and my recent medical challenge. Alison was a great listener over lunch and offered all sorts of help for Remie.

Two hours after school of having Alex and T at our house making and flying paper airplanes was truly grounding. I'm so thankful I could have that as part of my day.

Day 353: Self-talk

Today I think I can adapt and overcome this challenge. I'm thinking of it as a 12 month learning process. I know it's not going to be easy but at least it's not life-threatening.

I went to the gym to experiment. I didn't wear my sleeve/glove as I only have one set and they'd get sweaty. My arm/hand don't seem any worse for it. I put my sleeve on after showering (Nick stretched it on a 1.5 litre bottle as per Dr. Helen's suggestion) so it was better, but it still pushes fluid into my hand. It'll be a challenge to get a balance.

Remie was in good form all day, which made it all easier. Combined with my day catching up on admin all was good. I topped off the day with a lovely birthday dinner for Rach with families at the Bavarian Beer Cafe, leaving me thankful for good friends.

Day 352: An intensive treatment plan

I went to the Mt. Wilga Lymphoedema Clinic today for an appointment with Dr. Helen, the rehabilitation doctor in charge. Nick and I were with her for about an hour, during which she took my medical history and explained more about the condition, what they offer for treatment and what I could realistically expect in my own case. It was exactly what I had been looking for.

We then met with Andrea, the head physiotherapist. After taking my medical history, she explained in greater detail that lymphoedema is caused by trauma to the lymphatic system (eg lymph node removal and radiotherapy). It can be brought on by a variety of events, and stress can make it worse. Different people experience it differently, with some having swelling in the hand and others not and some having longer and more severe 'flare-ups'.

Andrea walked us through the program they offer in greater detail, talking about the daily massage and bandaging, gym, psychologists and nutritionists. She explained that I'll be wearing a compression sleeve and glove for at least 18-24 months daily and that I should think of it as me post-treatment medicine. She offered me a 4 week daily program (3 hours/day M-F), but given the upcoming school holidays, I'm only going to be able to do 2 weeks starting on 8th September.

We left 2 hours later and I felt like I had finally received a treatment plan that seemed to make sense for the condition. For the first time in weeks I felt a bit optimistic.

Nick and I had lunch before doing a bit of shopping and getting the kids. I spent some time catching up on admin while he did homework with Remie and organised dinner. It was a great break.

Poor Remie is still struggling, having screamed at least a dozen times at one family member or another. She's saying "it's too hard" and telling us she wants to be a baby. She opened up more tonight saying that it's hard having a mum with cancer because I have to wear my compression stuff and then I have to go to hospital for treatment all the time and can't do fun things with her. She also said she's worried that her classmates will make fun of her if she cries in class because she's worried or sad. That's an awful lot for a nearly-7-year-old.

Day 351: Frustration and grieving

Another visit with Dr. Theresa left me feeling sad and blue. She told me I'm going through the stages of grief and I will come to a point of acceptance. She also told me that I need to be wearing my compression garments for all of my waking hours. My l-Dex score went from 60.5 down to 56, but she'd like to see it drop more quickly. Clearly my body isn't doing that by itself, but there's no plan for regular treatment to help it. She was supportive of my assessment and treatment at Mt. Wilga but counselled me that I may not get in there for awhile as they often have a huge waiting list.

My frustration is that no one can clearly tell me what needs to happen. From all the reading I've done, it seems that early intervention is key, but how early is early? I'm wondering if treatment at an intensive clinic will yield better results. Perhaps not necessarily, and that's why no one recommended it earlier.

I finished my appointment and caught up with Ruth. I started my grieving with floods of tears that I expect to see more of before I hit the acceptance point.

In all of my self-absorption and sadness I'd forgotten Remie's book order when I dropped the kids off at French before school. Her poor face crumpled when she realised it, so I managed to drop it by on my way to the hospital.

I was hoping to be celebrating as my one year anniversary of diagnosis approaches, but instead I'm back into appointments. Plus Remie is anxious and scared. Sometimes life is really hard.

Day 350: More reduction in swelling.

I spent most of my kid-free time today catching up on my admin tasks and errands. It felt good to be making at least some progress. I fit a walk in around the errands which was great as the sunshine was good for my soul.

I'm finding the lack of a regular exercise routine quite frustrating. Walking was pretty much the only option today with my hand/arm as bandaged as it was so thankfully the weather cooperated. I may try to create my own yoga routine that I can do when I'm bandaged again.

I took off the bandages about 6p and the great news is that I have fingers, a hand (still a bit puffy) and a forearm again. I can still feel fluid in my knuckles and in the back of my hand, but my fingers are nearly normal and I could get a watch on my wrist. I am amazed at how effective Erika's wrapping was. I'm curious to see if Dr. Theresa will bandage me again tomorrow at my appointment.

I'm encouraged that my arm has finally returned to a state approaching acceptable. Pity it's taken nearly 4 weeks to achieve this result as I think my emotional state would have been less impacted with quicker results. I'm trying to look at this first "episode" of lymphoedema as a real life case study to learn from so I know what to do when it next happens. I'm trying to create my toolkit (therapists, tools (bandages and compression garments) and exercises) so I can use it next time. I'm hoping that Dr. Helen and the practitioners at the Mt Wilga Clinic will add to this when I see them on Wednesday.

Day 349: Claw hand

After a terrible night of huge intestinal carmps, I slept until 7.30a. This is a 10-year first in terms of wake-up times. Usually Remie is in waking me by 6.30a, but she's been getting up and reading. Today it was Alex who came in first. Ahh, the times are changing.

I fit in a short walk while my family went bike riding (I couldn't get on my bike with my bandaged arm). Erika spent another 1 1/2 hours with me on massage and bandaging. She put lots of padding on my hand to move the fluid out so it looks likea claw. The good news is that yesterday's bandaging brought the swelling down lots, so hopefully this will make more progress.

A lovely lunch at Jen and Owen's was followed by a lazy arvo watching the Swannies win. Alex hung with me while Nick and Remie went down to the beach to find pets (thankfully they came home empty handed).

Everything seems hard at the moment.  Sure, figuring out how to do things with one arm is challenging, but I know it won't be forever. I think I'm just generally down in the dumps. I know that it'll pass, so I'm just going to enjoy my sleeping and take the time to lay low.  I'll do my best to put on a positive face to help Remie, and it may help me, too.

Day 348: A week of treatment

Nick got home this morning and we all went to my weekly girls' brekkie to catch up with the other families. We had a grown up table and a kids table. It was a fun change.

Then I saw Erika for massage and bandaging. It took about 1 1/2 hours for her to move lots of the fluid out of my hand and then wrap it plus my arm up to keep the fluid moving up and out of my arm. At $125 it is a bargain. Unfortunately I have reached my health fun benefit limit for physiotherapy, and since Medicare won't cover it (Medicare doesn't recognise lymphoedema as a chronic condition that requires regular treatment), my out of hospital treatments will be out of pocket.

I will see Erika again tomorrow. On Tuesday I'll see Dr. Theresa.  On Wednesday I'll go to the Mt. Wilga lymphoedema clinic for an assessment with Dr. Helen (I understand that any treatment I get there may be covered as in-hospital so my health fund should pay). I'm hopeful that insensible treatment will help get this under control.

We had an enjoyable afternoon at the Mythbusters live show, then Japanese  for dinner at King Street Wharf. I now have an aching gut and hope that it will pass while I sleep.

Day 347: First anniversary check up

As I'm coming up to the one year anniversary of my diagnosis, it was time for my first annual mammogram and ultrasound. The poor girl at the Mater Imaging checked me in at 10.20a and asked if they were doing a full mammogram and ultrasound. I replied with something totally inappropriate about only having one side to do and she was a bit flustered.

The mammogram was fine with a normal result. The same went for the ultrasound. I asked the sonographer to check my scar and left chest wall just for peace of mind.  Again, all looked normal.

When she finished, I asked if she could look at the lump on my left forearm as I had an ultrasound booked in for Tuesday. She had the time so had a scan. There's definitely something there, but she didn't know what it is and didn't think it looked nasty.

I went over to see Dr. Fran and started my 12.40p appointment with Dr. Ben. We talked lots about my arm, then about any lingering symptoms post-chemo (none) and general health (good). He did an exam and seemed happy that the swelling hadn't spread to my armpit or breast. He then mused that my arm swelling might be caused my a blood clot as the Tamoxifen makes me more susceptible to clotting on long flights. He wrote me a referral for an upper arm ultrasound and got it scheduled for 2p. He wanted to be sure before the weekend as it would've meant me coming off Tamoxifen, going on a blood-thinner for a bit and looking into an oopherectomy so I could go on an aromatise inhibitor instead.

Dr. Fran came in and we discussed lymphoedema (a tough one for the medical profession, in part because it is not recognised by Medicare and thus treatment is not covered), a possible prophylactic mastectomy (doesn't reduce chances of a metastesis as cancer rarely moves to the other breast; any cancer in the remaining breast is usually a new one) and  a possible oopherectomy. We discussed the fact that my ovaries may not be producing much oestrogen anymore, so most of it would be coming from my fat cells. I worked out that reducing fat cells would reduce oestrogen production, and Dr. Fran agreed, "especially around the mid-section", she added.

I fit in a quick lunch with Deb and Roz, then headed back for my ultrasound on my possible clot. All was fine. I checked in with Dr. Ben and got the ok to go, 4 1/2 hours after arriving. So much for my day.

I'd managed to sort out with Emma that she would get the kids, which was great as I would've been late. The logistics of these unexpected tests and appointments can be challenging. They were happy to see her, so all was good.

I ended that madness of the day with a peaceful dinner with Jenna.

Day 346: Hope

The kids were in great form this morning. Piano lessons went well and they were helpful, aside from Remie's minor fit about not being able to find her jacket.

I had a challenging workout at the gym that helped adjust my attitude to one of being able to get through these current challenges. I find a bit of cardio and some good music can't do anything but help.

I came home to find a package containing my "custom compression garments" by the door. I never thought I'd feel so happy to receive my glove.

Lunch with Camille was uplifting. She's going to give me her plastic surgeon's details to get a second opinion on a tissue reconstruction.

When I picked up the kids poor Remie started crying as soon as she got in the car because she'd lost her drink bottle. Upon further inspection, her entire sandwich was still in her lunchbox, and her drink bottle (which Alex ran in to find) was full. After a bit of a battle over afternoon tea, we settled in and had a lovely afternoon.

Kate came by with a bottle of wine just before Alex went to bed. It was really great to have some adult company with whom to talk about families and dramas.

Right before she left, I took off my glove that I'd been wearing for 4 hours and my hand felt the best it has in 3 weeks. The fluid has all moved up my arm, but I think that's what it's supposed to do. With 2 treatments on the weekend then one on Tuesday and the clinic appoitment on Wednesday, I can see there's a light of some sort at the end of the tunnel.

Day 345: Kids

Poor Remie wasn't excited about going to school this morning. She got sad when I dropped Alex and her off; I thought she might cry, but she bravely headed into the school yard.

All my specialists tell me that exercise is key to recovering from treatment and getting the lymphoedema under control. So I went to the gym today. I'm not supposed to do any weights, so I got on the spin bike (not easy when you can't use one arm) and did all my hip exercises. If nothing else, it helped my head.

Ruth came by for lunch. Before we were finished, I'd received a call from school to pick up Alex who was unwell. When I got there, I checked in with Remie, whose class was doing computers, to see if she wanted to come home. She said she wanted to stay, and one of her friend's mum, who was helping with computers, offered to bring her home.

Alex rested while Ruth and I talked. He seemed to just be run down.  When Remie got home they played happily for awhile. It's so nice when they get along.

We needed to decide if Remie would be interested in the Mythbusters show we're taking Alex to on Saturday, so Alex set up a little cinema in his room using my iPad for Remie to check it out. It was a great little treat for Remie. 

Day 344: Meltdowns

It's been building over the past few weeks, so I feel like it's time to let it out. F*^K cancer. It had taken  my weekly routines and replaced them with visits to doctors, nurses and therapists; it has made me question my belief that eating well and exercising regularly means I can enjoy life; it has robbed me of the faith I once had in my body's ability to fix itself, even if it needs help; it has given me a daily worry that I might have to say goodbye to my kids too son; and it has taken my daughter's sense of security and put fear, anger and sadness in its place. Bloody cancer.

When I picked the kids up from school today, Remie burst into tears in the car. She said she was sad that I'm not well and she's worried that I'm never going to be well again. Her focus is the appearance of my hand and arm, but she also sees how it is implacting my movements. We had a big cuddle when we got home and talked about my treatment for it, so she seemed to calm down.

Then tonight I receive the following email from Remie's teacher:

"Hi Nancie,

Just wanted to let you know that Rem had quite a bit meltdown this morning in class.
When we were talking about our feelings she said she didn't want to be at school today and then broke out in tears saying she just wished that mum was better. She went on to say about your hand and a few other things that were upsetting her.

I meant to email you today but it was just a crazy day. I ended up talking to her and the class for about 15 minutes about what a hard situation she and your family are going through and how amazing you have all dealt with it so far. Also that unfortunately cancer doesn't just disappear and that she has to keep on being amazing and bouncing back as much as she can but whenever she needs just to let it out and talk to me and the class whenever she wants.

She was much happier after that conversation and ended up having a great day. I do think she is best to come to school but I did suggest maybe a special mum daughter day some time soon. Not sure what your thoughts are?

Poor little thing, my heart broke when she got upset :( "

Poor Remie indeed. I feel so sad that she is so sad and never mentioned it to me. I wonder if she doesn't want to burden me, or maybe thinks I don't want to hear it. Hmmm, it's time for a chat. 

On a more exiting note, I have an assessment appointment next Wednesday at the Mt. Wolgan Lymphoedema Clinic. They run an intensive program with care from doctors, massage therapists and physios. They are the only hospital in Sydney that has a dedicated lymphoedema program and is "the gold standard" for treatment, say my breast care nurses. 

I rang Mt. Wilga after my talk with Claire. We covered my efforts to get treatment for a condition for which there aren't enough therapists. We also talked about my somewhat shaky mental state and my need to get in to see one of the counsellors associated with the Mater. I may try to get Remie back in as well. 

Just to make sure my plate is well and truly full, I was the innocent party in a rear-end collision that saw no harm come to all involved (I was taking Alex and a friend to Cubs; they thought it was very exciting) but saw some minor damage to my car (and more to the other car). I really didn't need another hassle. 

Day 343: Specialist referrals and fears

It was a wet and dreary day punctuated by seeing Michelle, who used to babysit my kids, and meeting her gorgeous baby, Nate, seeing Dr. Karen and grabbing a bit with Hiraani. The kids were in great form (Remie even apologised after screaming at me) and not missing dad too much yet.

I saw Dr. Karen for referrals to Dr. Andrew (they only last a year) and Dr. Alex, the plastic surgeon I'm going to see in a few weeks to gather information about a tissue reconstruction. She also wrote me a "care plan" for my lymphoedema, which means Medicare will cover some portion of 5 physio fees for treatment. She gave me a referral for an ultrasound on the lump in my left forearm that I noticed a week ago but forgot to mention to my doctors in any of the 3 visits I had in the past week (!).

I am plagued by a feeling that my body is failing me and I am slightly adrift. It was undoubtedly the presenting of the lymphoedema that kicked it off, but our discussion with Dr. Andrew last week about metastases really set me on edge. Perhaps it was his use of the words "you had a couple of nasty cancers" that brought the whole situation home. I find myself cuddling with the kids and hoping that I don't leave them too soon. I am doing my best to focus on the positives despite getting back on the oncology merry-go-round and suspect my outlook will improve when my hand swelling is under control and I can get back to a "regular" routine.

Day 342: Some success

It was a rainy morning after a terrible sleep (my hand got sore from the bandaging), so I stayed in bed until Remie came in at 7.20a because   She " thought I would want to be up".  The morning was very lazy until Rachel came by with E and M for a play date. I got to talk to my mum after her corneal transplant surgery while the kids entertained themselves. Rach came back for lunch, then she and I had a walk and found me a poncho that I can wear while my arm is wrapped up big.

I did as Erika instructed and took off the bandages just before dinner to find that my fingers and hand were greatly reduced. I'm so very pleased to have more movement. My arm is still pretty swollen, but at least the lymphatic fluid is moving in the right direction (up my arm and out through my torso).

Nick's off tomorrow morning until Saturday morning. He did all the food prep plus extra chores this weekend as he feels badly.  I'll just remember how nice it was to have him around for our holiday. And I'll watch the rest of series 2 of "House of Cards".

Day 341: Massage and bandaging

I woke at 6.40a feeling much better. After a gorgeous swim with Jenny and brekkie with Jenny and Rach,  I came home and cleaned my room as the kids were doing theirs.

I walked 10 mins in the pouring rain to my appointment with Erica, a trained lymphoedema specialist. I fount her on the Australasian Lymphoedema Register and contacted her 2 weeks ago when I couldn't get into the specialists at the Mater. She asked about my experience so far then got into a lymphatic drainage massage, at the end of which my hand looked much better. She then bandaged my fingers, hand and arm to help the movement she made continue towards my armpit and central lymphatic system. I was in with her for nearly 2 hours and will see her again next Saturday and Sunday. The bandages ideally stay on until tomorrow night, after which time I go back to the compression sleeve and glove with bandage on top.

 A family lunch at a local pizza place was followed by an afternoon on the couch. It was lovely. Nick did dinner for the kids as my hand is a bit immobilised. We had a lovely dinner with Sue, Archie, Eimer and Mike. Now it's time to fall asleep to the sound of the rain. I'm so glad I'm not in a tent.

Day 340: Allergies

I have been reduced to a snot-dripping, eye-watering, non-functioning heap thanks to what I think are allergies. There is a chance that, after a Telfast at 7.30a and a Claratine-D at 2p, plus the recent onset of chills, this is the start of a cold. Whatever it is, it has wiped me out.

Renee came to sort me out with a massage. She managed to get lots of the lymphatic fluid out of my hand, but it all went back once I put my sleeve, glove and bandage on. My tight lower back is undoubtedly contributing to my Achilles issues. I am now convinced that my exercise not only feels good but keeps me healthy. I'm still paying the price for 7 weeks of relative inactivity.

On that subject, I went to the pool and swam 1km. It is supposed to be helpful in reducing lymphoedema, and it's good with my hip, so I suspect I'll be doing more of it. It's not at all the same as running, but I'm hoping I can learn to love it.

Finally, I spent 9.5 hours today in my sleeve, glove and bandage. I think I could do a better job with the latter, so maybe I'll get Nick's help tomorrow.

Day 339: Removable bandages and reconstruction options

I didn't get out of bed until 7a. No one came to me prior to that. Wow. That's rare.

Grace, our piano teacher who comes to us on Thursday mornings, was kind enough to do Remie's hair because I couldn't. She did gorgeous French braids and set the standard very high.

Rachel, Nadia and I had a rejuvenating walk and coffee after drop off.  Carrying my grocery shopping into the house afterwards was a bit if a challenge. Then I got to take off the bandages and have a shower. Bliss!

I saw Carol, the other lymphoedema physio, for my next steps. She ran my L-Dex (lymphoedema index) score, which had come down to a 60 from 77 (normal is under 10). She explained that the lymphatic fluid that is causing my problem is in the tissue, not sealed like blood in veins, which it why it can't be detained. She also gave a timeline for getting this "episode" under control that has Christmas as it's endpoint (!). She took all sorts of measurements on my arm for a custom sleeve and glove. She then gave me an off-the-shelf sleeve and gauntlet (glove without fingers) to use until my custom items come in next week.

From there I crossed the foyer and went to talk to Dr. Andrew about getting my expander out and next steps surgically. We discussed the lymphoedema and then I broached how I want to proceed. I said I wanted my right breast removed for peace of mind and symmetry. He said he wouldn't do any surgery until 6 months post-treatment (November). He urged me to consider a DIEP reconstruction as it used my own tissue (from my abdomen) to rebuilt, meaning I wouldn't be using a foreign body, which could help with the lymphoedema. He also suggested I look into lymph node transplant. He urged me not to rush my decision and sent me away to gather more information and think about it.  I will indeed do this as a full rebuild was not on my radar.

Bedtime was easier with Nick home. Alex, however, woke at 9.30p crying and saying he was "sad". He didn't seem to know why.

Day 338: Making peace with my flipper

I'm at 36 hours of bandaging and all is ok. It doesn't hurt and I'm getting by fine with the discomfort and figuring out how to do things one-handed.

Showering was entertaining as I wrapped my arm in glad wrap, then realised I needed help with bottles of shampoo etc. Alex was my saviour (the glad wrap was his idea). Bless.

A coffee with Sara before the kids' class skit at assembly helped my headspace, as did a brief pop in to see Mel. I am thinking more positively about the long-term outcome and putting the time that treatment may take into the perspective of many years.

Catching up with Roz and Deb for lunch was wonderful; I always feel positive after time with them. I did manage to break a glass with what Justin has called my "flipper", but that was it.when I complained about how hard it is to wash my hand, Roz said, "Makes you think about how people with no arms get along".  I don't feel sorry for myself anymore.

The kids are being really helpful. We'll get through this. Nick's home tomorrow (though then away again next week) so I'll have some help. Now I just have to figure out what to wear over the bulk of the bandage to keep me warm...

Day 337: Diagnosis

Steph welcomed the kids at 7.30a and I hopped into the car to drive through the 10kms in peak hour traffic to get to my 8.30a appointment. Happily I made it.

Dr. Theresa was wonderful. She took a tape measure to my hand and arm then did an LDEX test which is specific for measuring lymphoedema. An average score is under 10; I got a 77.

Dr. Theresa explained that we needed to start with compression bandaging in the hopes of moving the lymph out of the arm, so she went to get supplies. She called it "a bit of a craft project" and set to work wrapping my fingers, hand and arm. This will be on until Thursday, when the wrap will be changed and kept in place for up to 3 days. Then it's on to wrapping with washable bandages until I get my custom made compression sleeve and glove, which takes 10 days. Oh joy. At least it's not painful, only uncomfortable and annoying.

I learned that the receptionists were not in a hurry to get me in because they thought I was a new patient; they had misspelled my surname on my first visit so there was no match. Thinking that I could've started this treatment a week ago were it not for this stuff up is indeed frustrating.

The upside of having limited mobility is that the kids were amazingly helpful this afternoon. They happily did  a few extra tasks. Alex even tried his hand at chopping beans. I can only hope it continues.

Day 336: Surgical "counselling" and physio appointment (finally)

I slept with my left arm on a pillow last night so my hand wasn't too puffy this morning; I could even make a fist.

Jo dropped off her 3 kids at 7.45a so the kids had some company before we walked to school. I met with Remie's teacher who said she is perfectly well-behaved in class. I guess she just saves the bad stuff for home.

During my coffee catch up with Aileen, we came up with a list of positive takes on my cancer-fighting experiences as follows:
1. I would not have cut my hair short and I am loving it.
2. It's winter so any lymphoedema treatment that involves bandaging won't be hot or obvious.
3. I can exercise my left arm by using it to drink copious amounts to ideally dehydrate and get rid of the excess fluid (though this remains to be confirmed by a medical specialist).

I went to the hospital to meet with the breast care nurse regarding my next steps and options for surgery as I've been contemplating having my right breast and ovaries (my cancer is estrogen-fed) removed for peace of mind. As the breast care nurses' office is in chemo cottage, I had the opportunity to appreciate the supportive environment again.

Michiko had a look at my arm to start and suggested I try to get to see one of the physios who work at the hospital in their other clinics since they are only in a few days a week. We then discussed the optional mastectomy (possibility of an immediate reconstruction or the expander process if not, symmetry issues, recovery) and the oopherectomy (possible impacts on how I'm currently going through menopause, surgery scheduling as a different surgeon would be responsible, recovery). I have my questions now for Dr. Andrew and Dr. Fran as well as another doctor to meet regarding my ovaries. The fun never stops.

Michi called in Kerry, another nurse, who had a look at my arm and the little hard lump I found yesterday. They agreed that it would be better for me to see so done sooner rather than later and managed to get me an 8.30a appointment tomorrow with Dr. Theresa, who is the person who I saw before my trip for my compression sleeve and glove. I'm feeling apprehensive and relieved to think I'll have information and a treatment plan tomorrow.

Day 335: Heavy and blue

When I woke up my arm was exactly the same. I know it's silly but I keep hoping that I will wake up one day and it will be back to normal. It's not only the treatment I dread but also the fact that I have this condition for the rest of my life. Then there's the bit that the nurse told me today when I rang hospital after feeling a hard lump in my arm: the swelling may never go down. Egad!

It seems strange that I was able to get through all my tests, surgery and treatment and remain positive while I am struggling to do so in the face of lymphoedema. I did struggle with my hip osteoarthritis until I had my replacement. I think it may be that the things that limit my mobility are the ones I find most distressing, especially if there is no cure.

I'm hoping I'll feel better once I get an actual diagnosis on Thursday and a treatment plan. I also meet with Dr. Andrew immediately following my physio appointment to discuss my next surgical steps (exchanging my expander for a proper implant, lifting my right breast or  possibly removing it and possibly taking out my ovaries). Information is good.