I may have gotten a bit drunk that night.

So they're going to give me steroids to take the day before, the day of, and the day after to help prevent an allergic reaction to the chemo. But the steroids could affect your sleeping so you're meant to take them in the early afternoon.

I'm also meant to do blood tests the day before each treatment so they can monitor various things.

Dr LM reckons most people probably don't do any work in the first week, go part time in the second week, and will be mostly back to normal by the third week.  Then you start all over again.

There's an injection (lonquex) you take the day after treatment which is meant to boost your immune system (which will be trashed by the chemo).

They've set dates for chemo for 8 July, 29 July, 19 August and 9 September.  The plan is to see him the Friday before each treatment (and get the blood tests done the Monday before each treatment).

The radiotherapy peeps called as well in the afternoon - they'll be cancelling the prep for the radiotherapy for now.

Got a call today from Canberra Health Services in Garran. They wanted to book me in for an intial consult with Dr LS the radiation oncologist for my next set of treatments. He explained where to park and where to find them. They suggested bringing Stu. It'd be a one hour consult, and treatment would likely start 6-8 weeks post surgery.

20.6.25

Went and saw Dr LS at TCH. She went through all the details for the radiotherapy. The problem is, she'd talked to my oncologist, Dr LM, who I haven't actually met with yet (I see him in two weeks), and he's advising doing chemotherapy. So they're thinking they may still do the prep day first anyway (where they measure everything up and tatoo you).

21.6.25

I don't remember the exact date (I should have taken note) but they had Dr Anita Hutchison (who I saw a few weeks ago) on ABC news talking about the need for women to be told about their breast density.  I wondered if I had anything to do with it haha.

23.6.25

Got a call from Radiation Oncology at TCH.  I think they'd talked to Dr LM again and decided that chemo is more than likey, so they're likely to put off doing the radiotherapy.  So I just need to let them know what's happening. 

24.6.25

Talked to Dr LS at Radiation Oncology. She'd talked to Dr LM and they're not ruling out chemo (something about the proliferation number being a bit high). So they've delayed the prep appointment. But still to let them know what's happening after I talk to Dr LM.

Slept ok til like ~3:00 then was awake for a while.  Got some more sleep til ~9:00.

Luckily we were able to convince the heater to work.  We may have left it on pretty much full time for the next two weeks on 20C because we were too scared to touch it in case it died and didn't come back again.

Apparently all the opoids they give you cause constipation.  So that was fun.  Not.  I'm totally not used to constipation, I never get it.

Stu's leave officially finished today (but he then extended it a week as carers leave). A while back he decided he was approaching burnout and needed a break. He'd just been so pissed off with everything even to the point of road rage, which is super unusual for him. So he took a combo of leave and long service leave and took six weeks off from 12 April to 25 May. His first couple of weeks were him just collapsing in a heap and recovering. He'd been toying with the idea of doing a road trip to visit friends and family up north, but then, the C-Word. It kind of derailed everything and ruined the last few weeks of his break with a whole lot of added stress. For me though it was kind of a blessing, because I had the car available to me for appointments, and Stu could come with me to them as well which was super helpful.

Monday 26 May 2025

The post-op bra I got hurts to sleep in.  I mean yes it does give really good support and stops things flopping around, but it's fairly tight and squishes a bit.  Slept mostly ok though.  I don't think the endone really does much - it still hurts whenever you have to roll over.  

Dr RW's office called, I have an appointment for 10:00 Friday.  

Forgot my anti-inflammatory in the morning.

I've got significant bruising under my arm.

Decided to wear my regular bra during the day - much more comfortable.

Tuesday 27 May 2025

The post-op bra still hurts to sleep in.  But slept mostly ok anyway.

One of the care nurses called me.  She reminded me to keep an eye out for infections, blood clots (I'm moving around so that shouldn't be an issue), do my arm exercises (they want you to be able to raise your arms above your head, not an issue), do some short walks, keep up with the Panadol (I don't think it's really necessary), don't use an underwire bra (hahah yeah right), keep water off the dressings (hahah yeah right).

Wednesday 28 May 2025

I tried sleeping without the post-op bra.  It didn't really seem to make any difference to comfort/pain though.  

I was able to do shoulder exercises with no issues.

Thursday 29 May 2025

Wore the post-op bra again overnight - marginally better.

Overnight last night I felt a bit more tender under my arm.

Friday 20 May 2025

Saw Dr RW in the morning.  It was a short meeting though because she didn't have the results of the pathology from the surgery yet.  She did have a look at everything and was happy with my progress.

Saturday 31 May 2025

Had a little bit of Sheep Dog (peanut whiskey) after dinner (possibly the first drink I'd had post surgery, can't remember).  Later my face went all red and my heart was pounding.  Weird.  Took a polaramine before bed.

Sunday 1 June 2025

Felt better in the morning.  Breast still a bit sore in the post-op bra and while in bed.  Under arm still very tender.

Wednesday 4 June 2025

Still doing ok.  My breast is still a bit sore with no bra on (when showering) or whenever I roll over in bed.  My underarm is still quite tender/swollen/numb.

I went to the nurse walkin clinic in the afternoon.  They removed all my dressings and everything looked good.

Talked to Dr RW in the afternoon.  She said everything looked good with the pathology.  There were clear margins on the tumor and no lymph node involvment detected.  So that was good.

---

My first couple of weeks of recovery went pretty smoothly.  I mean sure there was some pain if I moved the wrong way, but nothing unbearable.  I gave up on taking the endone before bed after like three or four nights because honestly I don't think it made any difference - it still hurt whenever I rolled over.  I think it was about a week or so before I could lay on my front, although I tried not to do that too much.  The sweetie tried to take care of me/the house (he did most of the cooking) so that was nice.  The bruising got quite colourful (dark red under my arm and yellow around my boob).  But no infections or blood clots or any complications, just some numbness under my arm.

Aka "The Chopping".

6:00 checkin at the hospital hurray.  That was fun for all involved.  Not.

Waited a bit then saw a nurse to confirm answers to the health assessment questions (aka do them all over again).  They took my overnight bag (this was around 6:30).

I went downstairs to CIG, but my appointment wasn't until 7:30.  Debated waiting upstairs or downstairs.  In the end I chose to wait downstairs as it was less crowded.  Although I did have to go back upstairs to get my blouse which I'd forgotten.

At 7:30 I went in for radiology at CIG.  Had to wait a little bit, then was able to go in and get changed.  Waited some more while just in the gown.  At ~7:50 went in for the scans.  Riley the tech injected two needles of radioactive dye which drained quite quickly into the lypmh nodes.  He took a bunch of images for that.  

Radiography machine looked a bit like this one

Then back to the CIG waiting room at around 8:20.

A bit after 9:00 I went in to get the wire put in.  I don't remember the doctor's name.  They put in some anaesthetic then inserted a wire all the way down the tumor so the surgeon can follow it to find it.  That was done by ~9:30.

Then I had to get a mammogram so they could check the positioning of the wire.  Annoyingly they had to do it twice so twice the radiation #grunt.  That was done by about 9:45.

Mammogram machine looked a bit like this one

Then back upstairs to wait for the actual surgery.

Just before 10:00 they took me into the hospital proper, I went to the loo, and they got me into a gown and shower cap and compression socks.  My overnight bag didn't have room for all my clothes, whoops, so needed an extra bag for the overflow.  Got wheeled into the OR.  In the ante room I had a brief chat to Dr RW and Dr FT.  I asked if they put would a catheter in my bladder, he said no (I always obsess about what would happen in various scenarios if you need to pee (eg being stuck in a lift, held in a hostage situation (Die Hard anyone?) etc )).  I asked what time it was, they said it was 10:20.

Funnily enough in the OR I had to get up and transfer myself onto the operating table!  Funny stuff!

Lights out.  Woke up.  Asked what time it was - they said 12:20.

I waited around in post-op for like half an hour (I think til around 13:10).  Felt super tired (anaesthetic does that) but didn't feel relaxed enough to sleep (I never relax, have you met me?).

Then I got wheeled off to my room - which was a single room yayyy!  There was a nice view of One Tree Hill when the bed is up high, but they put it down so you couldn't see the view lying down.

Then there was lots of waiting around and they did some observations at various points.  They got me some sandwiches at one point which I scoffed because I was starving.  Hospital Time is a thing y'all!

Eventually (14:09) I asked the nurse (Sam) to get me my phone so I could call the sweetie.  He was downstairs and had been since 11:00!!  Eeep!!  He should have stayed home until I called!  Dr RW had called him also.  

Got the sweetie to take photos of me, then sent them to everyone.  

Chatted to the sweetie for a bit and eventually Dr RW came by and said it all went well.  Then the sweetie went home to rest.

I was so vague all afternoon.  Drugs mess with your brain!  Who knew!?  I didn't really remember anything the surgeon said.  Cath had called me at one point but I'd missed the call. Stu had to remind me that she'd even called, and afterwards I don't remember what we talked about.  I think I was probably high on painkillers.  Not actually *feeling* high, but pretty chilled and not in any pain.  I basically kept active, paced the room somewhat, and started making the little wooden fidget spinner thingie T/J gave me.  I didn't want to just sit still or lie down to reduce the risk of blood clots. 

I also drank a LOT of water.  Like six or seven jugs of it throughout the afternoon/evening.

There was a nice sunset.  Not that I could really pay attention to it because DC called in the middle of it and talked for 20 minutes whoops.

Observations dropped back to hourly at some point.

Dinner was quite early - at 17:15; ate it while watching the last of the sunset.

Stu came back while I was finishing dinner.  He was utterly exhausted from not sleeping and the very long day.  He left around 18:20.  I closed the door after he left - it certainly made the room a lot quieter!  It felt like a lot later than 18:30 though.

I got frustrated at the water jugs because the lids were hard to get off when you've just had surgery and didn't want to strain yourself.

Puttered around getting ready for bed.  Even after six or seven jugs of water I think I'd peed like once.  I did eventually start peeing it later in the evening.  I couldn't really relax enough to sleep with the stress of peeing and the constant interruptions.

They were debating putting something on my legs to help prevent blood clots but decided I didn't need it on account of I'm up and down like a fricken jack-in-the-box.

My blood pressure was pretty low after I took my BP medication so they just said be careful getting up.  

22:00 was the last obs then they left me alone for a while.

Peed again at midnight but then only once more in the middle of the night.

Saturday 24 May 2025

Peed again at ~5.00. The new nurse came in ~5:20 for obs or something, but said I'd have time for more sleep til breakfast at 8:00. Then she came in at 7:05 (right in the middle of me listening to the news) to do another handover.  Got up and did my hair and wanted to have a shower, but didn't know if I could do that with the cannula.

Note: sleep was crap. I couldn't relax and I was only allowed to sleep on one side so I was getting uncomfortable being the same position all the time. Also whenever I fell asleep I'd wake myself up with my snoring.

Dr RW came by to see me - she said everything was good and I could go home, that I'd get paperwork from the nurses.

Had some breakfast.

Started getting ready to go.  They took my cannula out so I went and had a shower.  I was ready to go a bit after 9.

At ~9:25 the third nurse came by with my prescriptions and discharge papers.

At 9:30 I was ready to go, just needed to wait for the sweetie.

The sweetie arrived to get me around 10:00.  We went past the chemist on the way home.  To a COLD HOUSE.  The heater was playing up again which was all very sad.

Fiona dropped by with a care package later in the day and we had a chat which was nice.  She suggested taking photos of my recovery progress.  Took some panadol even though I don't think I really needed it.

Before bed I took a bunch of painkillers and anti-inflammatories.

Had the consult with Dr RW in the morning. 

Talked to Mum in the early afternoon.  Talked about a few things, and she suggested I watch last night's Compass (which I did on iView some time later).

A little bit later got a call from Rachel, a pre admission nurse, about the plan for Friday. I need to get them to update Dr LH's practice details (they still have that she's in Civic). Also if I get any symptoms of walking pneumonia I should let Dr RW know. I'll get a text on Thursday about admission time for Friday and fasting instructions. You go to level 1 admissions, then once Canberra Imaging opens you go down for a scan and markers. They suggest bringing an overnight bag with your medications, toiletries, change of clothes etc.

I also filled out all the admissions stuff on the Calvary private website.

Tuesday 20.5.25

Got super upset in the morning seeing EK415 flying over Western Australia without me on it.

Karen, one of the nurse care advocates called me in the afternoon.  She suggested going to Colleens in Garran to get a Post-Op Bra (~$30). They're front opening for easier access and opening/closing and provide a lot of extra support. She suggested calling beforehand to make an appointment (but you can make an appointment on their website).  She also suggested coming into the walk-in clicic (which is on every Wednesday 12:00-15:30 at North Canberra Hospital Outpatient Clinic) where they offer a free one (assuming they have one that will fit).  She said they'll call me again next week to see how I'm travelling.  She gave me a bit more detail about what they're likely to do on Friday too. On Friday I'll need to go down to Canberra Imaging Group before surgery. They'll be doing a wire insertion to guide the surgeon. This will hang outside and be taped down, so will need to be careful not to move too much. They also suggest wear a front opening top so you don't have to lift your arms as much. They'll also be doing a mapping test where they inject slightly radioactive dye which I may need to massage in so it'll travel to the lymph nodes so the surgeon knows were to go to get the lymph nodes.  On the Saturday the physio will be on the ward to go through exercises I can do (edit: this didn't happen).

13:52 Got an SMS from Calvary Bruce Private Hospital telling me to pay the $500 excess.

13:57 Got an email Little Company of Mary Health Care telling me to create an account and access their online portal - which had an email from WD telling me to pay the excess.

14:38 Got an SMS from Dr FT (the anaesthetist) telling me to fill in patient questionnaire (pretty much the same as the hospital's).

14:54 Got an SMS from Medicnet telling me anaesthetist fees have been emailed to me (don't think so? maybe it was part of the email stuff above?).

Last week Dr LH gave me a certificate to take this week off as sick leave. I was already going to be on holiday leave so I wasn't really planning to take it as sick leave. But with all the stress and all the appointments and phone calls and just STUFF, this week certainly hasn't felt like a holiday. In the end I did decide to take this week as sick leave instead.

Wednesday 21.5.25

Got an SMS that the radiology appointment will be 7:30am Friday.  

I was going to go to the walk-in clinic at Calvary to see if they had any free post-op bras but that was too stressful, so I ended up just going to Colleen's in Garran. Relatively painless experience, although the bras were $85 each not $30 as indicated they might be.

Got home and found a huge bunch of flowers had been delivered to us from Stu's work - so lovely!

Thursday 22.5.25

Someone (didn't catch her name) called from Medicnet asking if I'd received the email from the anaesthetist. Um.. no..? Turns out they'd written up the completely wrong email address - heath instead of health and gu instead of au.  WTF??  So she sent it through again.  It says to pay by bpay but keep the receipt and send it to them since it won't go through for a couple of days.  She also says there's usually three payments - one to the surgeon, one to the hospital (paid I think) and one to the anaesthetist (paid!).

Also in the morning Dr FT the anaesthetist called me. He says to fast from midnight tonight. I can have a glass of water in the morning to prevent dehydration. He indicated there might be a choice to stay in overnight or go home in the afternoon !? I will get some antibiotics/painkillers during surgery.  I later wondered whether the antibiotics I'm taking as a prophylactic for the walking pneumonia would interact with the ones given during surgery, also I didn't know going home same day was an option, or does that depend on surgeon?  I think I'd rather stay in overnight for observation anyway.

Got an SMS from the hospital after lunch to say checkin time is 6:00. Stu is going to love that. Not.  It also included some other information about fasting and where to go.

Asked whether they do pathology on lymph nodes during surgery, she said no, it takes a week or two.  They will however do more xrays on what they chop out.  

Told her we thought we'd be ok with doing just the lumpectomy.  If they decide later that the margins are spread then we can think about doing a mastectomy.  

As an aside.  How stupid a word is "lumpectomy".  Like, -ectomy is a nice Greek suffix meaning to cut something out.  But then you have "lump" which they think is probably Old English.  They really need a Greek origin word for lump.  Just sayin.   

She also gave me a package from Bosom Buddies which had some information, an arm pillow, a seatbelt pillow, a stress ball, and a bag for a drainage bag.

Still no closer to a decisions on what to do about surgery (lumpectomy vs mastectomy).  Stu said we should ask about decision points on lymph involvement.

Dr LH called me a bit before 16:00.  Remember how I said when I saw her last she had a slight cough?  Turns out she's got "walking pneumonia" and I've been exposed, and if I get sick surgery is off.  Fricken great.  She prescribed me some antibiotics to take from early next week as a prophylactic. 

Knocked off work early to pack up for Sydney on the weekend. This past two weeks I've actually still been at work, but working from home in "quarantine" so I don't pick up any colds or covid to make me sick before I go away.  I haven't told anyone at work yet about this whole saga except Con and one or two other people.  I'm meant to be on holidays for the next month, so noone will miss me at work when I take time off for surgery.

Went to see Dr LH afterwards. Stoopidly I didn't wear a mask in her room, and neither did she, even though she had a little bit of a cough. She reckons I should just chop off my boobs - chop off anything that gives you cancer. I partly agree, and I'd also be happy to go flat - no more ginormous boobies to have to worry about. She gave me a medical certificate for next week to take off work, which I don't really intend to use.

Talked to Mum after work. It's going to cost like six thousand dollars to swap out me for David. Not to mention the EPIC STRESS she's now going through having to deal with it all with the travel agent. I'll be EPIC PISSED if the surgery doesn't go ahead until after I was due to get back. Like, utterly ropable. Feeling hopeless and depressed about it all. Mum is feeling stressed out of her mind dealing with it all, upset that I won't be able to go, upset that I've put in all this work for nothing. David is stressed about taking a month off at such short notice. Oh yeah and there's a breast cancer diagnosis in there somewhere to be upset about too.

13.5.25

Took forever to get to sleep stressing about All The Things. I'm going to be so upset if I miss out on my holiday only to have surgery scheduled for after 16 June - after I was due to get back. Talked to Mum again after work. She's a little less stressed today, but all her church work is piling on which isn't helping. Did a bit of reading and writing up of pros and cons of different treatment options.

14.5.25

Took forever to get to sleep stressing about All The Things. At one point I wondered about the sanity of chopping off a whole heap of perfectly good flesh. I mean what did it ever do wrong? Depressed/stressed tonight. I need to make a decision. Everything is awful. Oh I also got results of MRI - actually pretty good apparently.

Whatevs. 

I decided my highest priority is getting my Europe 2016 photos online.  So I need to cull cull cull.  I'm going to try and do a day per day.  Possibly a little ambitious but we'll see how we go.  The idea is I'll read my blog entry and do a first pass cull in the morning before work, then do a second/third/final cull in the evenings. 

I also want to try and keep up with blogging/writing every day.  Probably during "happy hour".  Yes I know I should be drinking less, not more, but f@%^ it, I've got cancer.  And it sure has been a week. 

Stu called his Dad today to chat about stuff.  He did talk for a bit, but it was mostly his Dad going on about stuff.  Stu told him about my cancer and what I had, but he pretty much just ignored it and went back to talking about whatever.  Weird stuff. 

With my blog, if it comes down to it, I'll turn off the dynamicness of it and static htmlify it, converting all links to https. With any luck Google will play nicer with it and index it all properly.  Then I just need to setup some sort of payment system so that the thing can stay online for years. 

Was definitely feeling somewhat depressed this afternoon.  Mum called today (52 min eep) and said the airlines refuse to change names, you have to cancel and rebook.  What a joke.  It's 2025, it's just changing an entry on a computer.  So it'll cost *another* like three thousand dollars for David's flights.  And that's even assuming Sun Island Tours will change the cruise/tour bookings.  I'm *really* not looking forward to trying to talk to 1Cover about options.  Plus Stu has been in a mood for a couple of days which is sure not helping.  Feeling like everything is my fault.  

Went in and filled out a whole heap of forms.  Then they called me in.  They have a little change room and you get undressed down to jeans, making sure to remove jewellery (wedding rings are fine to keep on).  You put on a gown and leave it open at the front.  You put your stuff in a locker and set a code on it.

Then you go to a little room and they stick a cannula in and ask a heap of questions.

In the MRI you have to lie face down with your boobs in holes.  Half way through they put a dye in my cannula for contrast. 

Oddly at one point it felt like I was being poked in the butt every time the magnet went off.  I asked about it after - apparently sometimes you can get nerve stimulation.  Funny stuff. 

So that took up all morning.  Told Connor I was totally over this whole thing.  But that driving around Canberra is actually quite pretty at the moment. 

Told Pam and Graham in the afternoon (Graham is out of hospital yayyy).  Told Tony, DC, Rob and Fiona after work.  Fiona called me after the movie we were watching finished and we chatted for a while.

Went to see Dr RW again at North Canberra public, she examined me again and we discussed options and dates. Dr RW understood about me not wanting to miss my trip, but was also not wanting to just say I should go. She also got an MRI booked for Friday at Qscan in Kingston. Anitha the one of the nurse advocates is quite nice too.

Finally messaged Mum and told her that I have breast cancer and I probably can't go on our trip and could she find someone to go with with less than two weeks notice. She called me and we talked for a while. She was pretty upset but determined to go anyway, even if she has to go by herself. Messaged EffanC. Messaged David. Talked to him in the evening. Messaged Kit. Talked to her in bed.

They're calling it a Pleomorphic Lobular Tumor, 17mm, grade 2 (maybe), hormone receptor positive, HER2 Neg. The left breast is generally quite a bit denser than the right. Options include surgery, chemo, radiotherapy, hormone therapy. Hormone therapy may be effective.

They gave me a contact list of surgeons and said to call them all and try and get an appointment. So I spent the rest of the morning calling around surgeons. The earliest appointment I could get was with Dr RW - tomorrow! - "because she's new". Yes the same doctor as I saw at BreastScreen! So I booked that in.

I'd manage to secure an appointment with Dr LH after the sweetie's long appointment, so we went together after lunch. But in the end I took most of the time and so got charged for the long appointment. Doh. She still thinks I shouldn't go on holidays hrmmm. She gave me a referral to see Dr RW tomorrow, and asked I-Med for an urgent MRI.

Like, what if the very act of taking the biopsy dislodges cells and they spread all over my body?

I was also stressing over whether or not I should go away on holidays. Will an extra couple of weeks *really* make that much difference in the grand scheme of things?

But if I do go on holidays I'll stress about this thing growing in me that could spread at any time. I'll stress about cells being dislodged by the biopsy and getting spread around while I'm walking all around Europe.

But then, what if I'd done my scans back in January when Dr LH first suggested it? Would it have even been detectable at that point? What if I'd done that and not found out about it and then it could be *years* before I had another scan. What then??

So many what-ifs :(

It was also surreal when we went to the Casey shops in the afternoon to do some food shopping.  Like all these people are just going about their lives, while I've just been given a (likely) cancer diagnosis.  

Talked to EffanC about *stuff* in the evening.  C also had dense breast tissue and had fibroid stuff that looked like cancer.