Breast Cancer Journey – Collateral, misses, and chaos

Saturday, 11th April, 2026

This post is a bit of an overlap, but it’s all because of my breast cancer that they had to happen. I must also warn you that there is plenty of whining, and I’m not really sorry. OK, I am, but there it is.

It was a hectic week once a peaceful Easter Monday was done. It was also a week full of frustrating but hilarious failures. What was it I called those days in Torino when things didn’t go as planned? Horrified that I now forget.

So much rain this month. April showers, more like April downpours

My eyes:

On Tuesday, I had an appointment with the Eye Cancer Clinic at Princess Margaret Hospital. They’d phoned to let me know to expect to be there for four to five hours, and they weren’t too far off from that expectation. Why there? When I went to see about restarting my cataract surgery course, the surgeon had insisted that, before doing anything to my eyes, I needed to make sure the freckle/nevus in my eye wasn’t cancer. (Did you know? they’d ask every time.) But I’d now had cancer twice, so… It was, quite honestly, a very scary thought. With my health anxiety, I worried and stressed that I already had eye cancer, and I was going to lose my eye. I fought this every day, telling myself how many decades I’d had this freckle without anyone commenting much on it. As a cancer survivor, it’s never that simple. Every ache, pain, change anywhere is an alert, nothing to be ignored, but carefully looked at and written off as ‘nothing.’ I was also scared at not knowing what tests they might do on my eye. I trusted them, but I barely trusted myself to be patient and cooperative. Spoiler: I was.

What happens at such an appointment? First, an eye chart. I was the expected “terrible” at this one. (Not their words, mine.) Numbing drops, dilating drops. Waiting. Then, when my eyes were so blurred I took my glasses off, so I didn’t notice it so much, they called me in for more tests. These involved looking into machines that focussed and unfocussed images, made me stare, don’t blink, and flashes — scans, photos… More waiting. The final test was the one I was dreading – an eye ultrasound. My brother had guessed “closed eyes,” but no. More numbing drops, a bunch of gel squirted into my eye and then a cold, slippery sensation as they scanned my open eye with the ultrasound wand. Weird but not awful. What a relief.

Princess Margaret Hospital was bustling. I’m always thinking, all these people affected by cancer. It’s something…

More waiting. Krish brought me a soup from downstairs. We were close on the four-hour mark.

Finally, they called me in again. A doctor announced herself and sat at a computer, looking at images. She asked if I’d known about the freckle, and I told her I had. How long ago, she asked. Decades, I let her know. I held my breath. Well, there’s no cancer, she said. More relief. Another, more senior, doctor came in, and she repeated to him what she’d learned from me. It’s not cancer, he proclaimed, and I was done.

View from the eye clinic. Interesting taking photos when you can’t focus on what you’re seeing. If it’s blurred, you’re sharing my view

The arm on my glasses, the one that’s come off and been stuck together with metal clamps or sticky tape, fell off. I stashed it in my pocket, fed up with the whole thing. When I got home, it wasn’t there. I now have only one arm on my glasses. Nice. Lopsided and out of focus, and needing to zone in on a better solution. Stay tuned.

Am I the only one who hates the feeling of dilation? I’m cross-eyed! And my eyes look brown…?

On Wednesday, I had a good day. The first in forever. I’ll save that for another post. I’ll say, however, that the words No Cancer have a very profound effect! I need to learn.

(Not) Lymphatic Massage:

On Thursday, I booked myself in for a lymphatic drainage massage. I thought I had, anyway. I had had to postpone this one two or three times to fit in with everything else, and realised that my port incision might still be too fresh to be touched. While not a super failure, it had its challenges. I arrived at the student clinic a full hour early and asked the driver if he would drop me at the shop across the road. He refused – citing the rules, which I know, but some drivers are more relaxed with them – life happens. He said he needed to drop me safely at my destination. I told him thank you but I would now have to cross the dangerous road. He was stoic. I got on with it. I lived. The store is huge, and I found and bought a few things there. I crossed back again and again I lived. Inside the clinic building, I headed towards the clinic only to be faced with several stairs that I couldn’t go down with my walker. Someone told me there was another accessible entrance at the other side of the building, but did I need help? I asked if she could manage to carry the walker down for me, and she did. Hooray.

I was assigned to Justin. I’d told them that I didn’t mind what gender my masseur was, but I admit to being slightly concerned when it was a young man, maybe in his late teens. I needn’t have worried. He didn’t know I wanted the lymphatic drainage, but he did his best after speaking with his instructor. I didn’t have to take my clothes off, and he did some gentle strokes on my arm – that’s all you need, apparently – and some more energetic moves in my armpits and around the collarbone. He finished with a head and neck massage, which was good. I’m not sure I will go back if it’s not the massage I really need. I suppose I have to cave and spend the money on a ‘real’ one. Cancer cost reminder.

The receptionist told me that WheelTrans uses their accessible door. I went out that way, but it was an asphalt path, and I doubted they would drive on it. I called them and said I was at the accessible exit, but they didn’t have a clue. Of course not. I told them that I was next to the parking lot, at the back of the building and would wait there. The call centre agent asked me many questions and seemed no further ahead. He said the driver would call me if I wasn’t around – no, they rarely ever do, so I said I would walk around to the front if I could get there from the parking lot. When I finally got there, I saw a WheelTrans vehicle already waiting and asked him if he was there for me. Yes, he was. I let the agent know I was OK after all and hung up. On our way out, the message came over the radio to meet me in the parking lot. Oh well, whatever.

On the way out, the driver stopped to talk to a young man who leaned in the window and looked at me. ‘My son,’ the driver said. The son had come out of the new LRT (Light Rapid Transit) station beside the clinic. What timing! Turns out the driver lived just a block away. Since I had lived in the general area for a couple of years in 1967, we chatted about how it’d changed. When I told him when I’d lived there, and what the changes were, he stopped talking and exclaimed, 1967? I was born in 1968. Whoa. (He looked older. Maybe I looked younger?) The LRT is infamous. It had taken 15 years to build that crazy (25 station, 19 kilometrelong) line It caused so much havoc.

On the way to the bra fitter. Leaside got an update
Maybe hard to see, but the crazy stretch of cars ahead of us. Toronto traffic!
The building for the student massage. In the Don Mills area. More ‘middle of nowhere’ stuff – for this urban dweller, at least

Compression bra fitting

Friday was interesting. I had an appointment to be fitted for a compression bra. I have lymphoedema after my radiation. It’s a pretty common aftereffect and, to be honest, I don’t really know I have it…except for the darn bras. I’m the type of person who, despite being large-breasted, would happily go braless. I’m that woman, like many, who throws the bra off the minute I get home or if already at home, the minute the guests leave. A compression bra is my nightmare. Think of a corset or control panties. But it’s a bra. It’s made to bind and constrict. You’re supposed to wear it all day long, even when home, and all night long is even better. It has hooks, zips and velcro fastenings.  (Picture at the link.) The straps are wide and pulled/velcroed tight. It reaches several inches below the bust. It looks like a serious sports bra-meets-corset. It doesn’t end there. Inside the bra, you need to wear a compression pad. It looks like a sanitary pad, but it’s filled with beads or chips that compress the breast even more. I have some fancy silicone ones, but I much prefer the handmade ones my therapist cobbles together for me each time we meet. You need a new one every four months, and you pay a portion each time because the Canadian health service won’t cover the whole cost. Another time I can talk about the cost of cancer…maybe.

I’ve had to delay these bra-fitting appointments about half a dozen times. Remember me saying I need a secretary? Both the massage and bra-fitting appointments have had to be changed many times. While at the eye clinic, I had a call from the bra fitters that they would see me the next day. No, I said, that was cancelled and gave them the new date. Noted.  It took me about half an hour to realise that I’d now booked both places for the same day and time. Square one again. The next day, I looked firmly at my calendar and made the call to get it right.

The bra place was in the north end of the city. It’s a Jewish area mainly, and I was reminded of Stamford Hill but with different costumes. My driver got me there and then asked, Is this it? I think so, I said. I’ve never been here before. If it’s 3077 this is it. Do I park here, he asked. I don’t know.

Inside the building, there were stairs up but no elevator. I pressed the button for assistance. Janice? came a voice from the top of the stairs. Then a whirring noise that went on for two to three minutes. A chair lift had been sent down. No, I called up. I have a walker and just need it to come up with me. Apparently, no, I had to leave my walker at the bottom of the stairs next to a busy walk-in clinic. I prayed.

There was much talk about where my government forms were. No one could find them, and I had to retrieve them from deep inside the hospital portal. And the bra. It’s certainly lighter weight and less cumbersome than the one I’d bought full-price, but I’m dismayed to hear that I need to wear it all the time with the 250g weighted prosthesis I reserve for “special occasions” to maintain the compression. I protested, in vain, of course. I’m at home most of the time, I said. Would YOU wear it to do dishes or watch TV? She smiled and said nothing. I was now in full whining mode and decided to just smile.  I was surprised to be given two after paying my share ($88). One to wear, one to wash, they said. OK! 

I visited the toilet, using their key. I rearranged myself and my head. I was already so tired and still planned some shopping before my ride came. My walker was still at the bottom of the stairs. Hooray. (Don’t ask how I walked around upstairs without it – answer, not very well.)

I crossed the road to the kosher restaurant I’d planned to get some take-out food for lunch. It had four stairs and no ramp. A passer-by swooped in and took my walker up for me, then retrieved me. I always feel grateful yet embarrassed at these gestures. I don’t know if I can fix that. After some exploration and noticing that every crumb of bread was gone from the shelves (it’s Friday!) I dismissed the menu and left. A lady saw me, and I was swooped again. She said she worked at Baycrest, a huge Jewish care facility in the area. I did not want to break a hip, she said. I tried to decide how I felt about being treated like an elderly patient. Maybe it showed on my face. You look really good, she said. Strong. Hooray.

At the supermarket by my ride meeting place, I picked up a slice of pizza that went into the oven and came out lukewarm. I was too tired to argue. I bought some vegetables and wandered over to the freezer case section. There were Hassidic women in this store with their kids. They were in their bubble, just as the Haredi had been in Stamford Hill. I smiled and went to pay.

The WheelTrans ad told me to wait at the north end of the supermarket building at the K Karate and BMO sign. K Karate, OK, BMO nothing there. So I waited for my Beck cab to arrive. Beck cabs kept pulling up and picking people up from the shop. None said WheelTrans, and none came out to talk to me. The sun went in, and it got cold. I messaged Krish that I was waiting to come back. A moment later, he messaged me that he got a message that I was a NO SHOW. When I’d entered and left the store, there was a collection of poles that stopped carts from leaving. It was about two inches too narrow for my walker, but I got through with a bit of shoving. I’d come out the same way with a cashier’s help. As I stared at my No Show notice, the cashier came over and asked if I was Janice. Apparently, a driver had stopped and asked for me, but not at the K sign, at the supermarket door, and she noticed it had no WheelTrans sticker. Foiled! I phoned the call centre and talked to a very impatient agent. I just want to make sure that the next person you send comes to the K Karate sign or phones to find me, I said. You’ll have to take that up with Customer Service on Monday, I was told. I’ll try to find you a ride, she said. I hoped so. I was ‘in the middle of nowhere.’

K Karate door. The wall had the K Karate sign

I waited. I shivered. I didn’t dare move. I saw a WheelTrans vehicle coming in past the supermarket, not the model I was told to look for, but I waved, just in case. The vehicle passed me by and stopped in a parking spot, perhaps 20 metres away. Not mine then. Ten minutes later, it left again, but the driver called out to me, Janice?  It was my ride, and no idea why, once again, there was miscommunication. But I was in. His very first WheelTrans passenger ever, apparently. Two minutes after leaving, the radio announced, Meet Janice at the K Karate sign. I give up.

We passed Casa Loma. The driver told me the story of how it was built.  I don’t think it was a true story at all, but it was entertaining. Bottom line, it’s frivolous and likely a vanity project,  and it bankrupted the owner

The driver was shy, nervous and nice. I tumbled indoors, wiped out. I emptied my pockets. I still had the toilet key!

Some days. And days. And days.

Index of all my Breast Cancer Journey Posts

Breast Cancer Journey – Bye Port

Friday, 20 March, 2026

It was my turn to get my port removed.

According to Google, a Port (cath-a-port) is an implantable venous access device. It’s a small medical appliance, consisting of a reservoir (port) and a thin tube (catheter), that is placed under the skin—usually in the right side of the chest—to provide easy access to a large vein. From the outside, it’s similar to a pacemaker – a bump under the skin on the chest,

Mine has sat there for about a year now. It wasn’t always cooperative, but considering the problems I had with bloodwork and administering the various medications and the damage chemotherapy can do to our veins, I was grateful to have it.

Chemo and immunotherapy over, I had some blood tests done to prove I was healthy enough, and off I went to get my little friend removed.

I arrived, as asked, at 8:30am for my 9am appointment. I spent that extra half hour sitting and trying not to think ahead. They’d asked me to have someone take me home, which meant sedation would be involved. I’ll be honest and admit that my fearful imagination had me lying with blood spurting everywhere when they removed it. The surgeon had told me, at the insertion procedure, that he’d had “challenges” getting it done. What if they had the same challenges removing it? I have the best imagination *(or is that worst?).

The waiting room

I was called in pretty much right at 9. I got my “clothes above the waist” into a bag, and I waited until about 9:30 for a doctor to show up.

Ready to put my gown on

When he arrived, he read my blood test results out loud and explained that he would be removing the port now. I waited for my sedation, but it didn’t happen, nor was it mentioned. I was torn between being relieved they wouldn’t be accessing and possibly botching up my veins, and nervous that I’d be, well, nervous. No time to dwell on it.

The doctor warned me that “this was the painful part,” injecting me around the site – just above my breast on the right. It really didn’t hurt that much. After all the slicing and dicing, prodding and pioking cancer brings, it was just another thing really. The doctor had also told me that he’d be taking the port out and that, since it had been in there a year, it might not want to leave that easily. I did feel a bunch of pushing and pulling that went on for about five minutes. Then the doctor asked, do you want to say bye to your port? I said yes. And he held it up for me to see. Wow. It was smaller than I’d imagined. And plonk it went into a dish. “Now the longest part, the stitches.” I imagined it in my mind as it was going on. Would it be neat stitches or a just-so job like with my lumpectomy? I wouldn’t know until all the dressings and steri-strips were gone, a couple of weeks away.  I let the doctor know that I was allergic to adhesives, and he told me that it was just a clear plastic to protect the wound and shouldn’t be a problem.

When he left, I felt a bit dizzy and weird and asked if Krish could come in, but they said, not yet. The nurse put this down to anxiety and brought me some juice. That helped. A few minutes later, they brought Krish in, and he helped me get dressed.

It was well and truly done.

From my stretcher
All done and happy
We shared a maple walnut muffin and hot chocolate afterwards

At home, I had a long nap after a bowl of soup. I was tired and a bit sore. Tylenol helped. I was well enough to make dinner later, then was glad for my bed just a bit earlier than usual.

Today is Saturday. I’m aware that the adhesive is a bit of a problem after all. My skin is itchy and inflamed around the edges. This is how it starts, so later we’ll change the bandage to something that’s easier on me,

I’m not really looking forward to my next blood test or IV but I’m not sorry that this chapter is now closed. I’ll put some photos below but give some warning space for anything triggering.

Index of all my Breast Cancer Journey Posts

1

2

3

4

5

6

7

At my bedside

“Want to say bye to your port?”
The itchy redness starting around the adhesive patch

Breast Cancer Journey – First mammogram after treatment

Monday, 9 February, 2026

Today was my follow-up mammogram – at last. I got ready, remembering not to wear deodorant and choosing clothes that were easy to take off. The scan was at Women’s College Hospital, where I worked for so long – although this is a new building now. Continuing from the Live Page:

I love WheelTrans. Even when they are late, I still love them. They’ve opened up my life. Today it sped me down to the hospital, no delays. In fact, the driver was, I told Krish, ‘driving like a bat out of hell. Great, he said. What? But I got there alive so that’s OK.

Proud of Women’s College, always a champion for women, although all genders are welcome here

The breast centre is on the 5th floor. I was early and thought maybe that would mean I’d have time afterwards to get some shopping. They sent me off to the changing room. This was all so familiar. Grabbing a gown, undressing, putting the gown on, throwing everything in a locker, and off to the waiting room. There I need to fill out a form, considering carefully how to show all my surgeries, all my results…and all the time thinking, why can’t I have done this at home, online, ready for me when I got here? There are always questions I falter on: When was your last menstruation? Hmm… Some things don’t change.

The technician came to get me. I was pleased to see that she was the same person who had done my last three scans. She’s an older lady with a calm manner. I let her know that I was worried this might hurt more than usual, since it already hurt anyway. She promised she’d be careful. She was. All the turning and arranging myself, it’s all familiar, yet the technician has to push and pull and shift your body and breasts as if you’ve never done this before. I had forgotten I was concerned about my port getting squished when the right breast was scanned, but she noticed it and said it would only be a little pinch. She was right.

Instruments of torture, I mean breast (squishing) plates for the machine
Technician’s area, safe from the scan rays
Mammogram machine
Mammogram machine. Many women fear it. Luckily, I’ve never found it difficult.

And I was done. The technician took me back to the changing room and as she said goodbye she lightly stroked my arm. I went into overdrive. What did that mean? Was she consoling or reassuring me? I pushed off the feeling and got dressed.

Emails from and to Denise:

Denise
12:56
Xx
Jan
13:04
Thanks. Waiting. I’m not usually scared. This one might hurt. Hope hope hope 💕

Denise
13:07
I just want the best news in the world please. xxxxxxxx Did you take any Clonazepam before? Marla gave me a morphine pain killer for before! (it made me sick so now I do MRIs)
Jan
13:11
Don’t have any drugs except Tylenol. I meant to take one. Oh well. It doesn’t last long. I’ll warn them
Jan
13:13
Took a Tylenol. It won’t kick in in time but I took it anyway
Jan
13:49
Will blog about it. The worst part is the food prices downstairs while I wait for my ride

Denise Grant
13:52
You’re still thinking of food??

Of course I am. That’s me. My cab arrived to take me home, this time more slowly.

View from the front door of Women's College Hospital
View from the front door of Women’s College Hospital. In the background to the left, the Ontario Legislative Buildings (Queen’s Park), to the right, government offices. The Women’s sign in the centre
Wheel-Trans accessible taxi
Wheel-Trans accessible taxi

I had just sat down to check something in email when I saw there was already a test result:

BILATERAL MAMMOGRAM

INDICATION: Surveillance. Status post left lumpectomy.

COMPARISON: Multiple priors, most recent May 2025.

FINDINGS:

The breasts show scattered fibroglandular densities. Stable post therapeutic changes are seen in the left breast.

There are no dominant nodules or suspicious calcifications seen in either breast.

IMPRESSION: No evidence of malignancy. Routine follow-up is recommended.

There it is. And the aftermath:

Judy
that’s most excellent Jan congratulations❤️
Me
Celebrations. Not sure when. First a nap

Email from Denise:
THANK-YOU BABY JESUS!!!!!

Difference in style there.

Index to all the Breast Cancer Journey posts

Breast Cancer Journey – What comes next – LIVE!

 

Sunday, 19th April, 2026

I realised yesterday that I have no appointments in the coming weeks. Very happy about that and going to plan some fun things, or at least one or two. Meanwhile, on the medical front (complaining alert):

Tired of having diarrhoea – the weakness it causes, and the mess

Tired of having body pain and will consider taking something to counteract this side effect of Letrozole. I know I need to take it, but the effort needed to do simple things like turning over in bed, getting off the couch, or walking anywhere is enormous. I thought it was age-related until I started reading about even young survivors suffering in the same way

My port wound is healing, but my body loves to hold on to the stitches. The one closest to my sternum was still there and poking through, so I pulled it out—the usual. The stitch at the other end of the wound is stuck in there fast. The area is red and sticky, but I don’t think it’s infected. It’s getting lots of Germolene, and I’m keeping my eye on it.

My nails are a ragged mess, and I have been cutting and filing them often to keep them from catching and tearing. I will ask the doctor about a bone-strengthening drug that’s not IV

I have many mornings when I’m weak and dizzy. It usually passes by late afternoon. Today I’m going out, so crossing fingers

 

Tuesday, 14th April, 2026

Yesterday was my one-year follow-up with the surgeon. He saw me early, always a plus. My mammogram was clear he said, I’m good to attend the Transitions Clinic, which would take over my oncology care and survivorship, including booking my mammograms. He felt my breast and said there were no problems. Krish asked me if he had been the one to sew me up, and he nodded. Good job, Krish said. The one before that was terrible. The surgeon explained that, before the surgery, they had worried they would have trouble finding the ‘cavity,’ which would have made it harder to do the revision. But it had been visible, and this made the surgery much easier. I asked if my mammograms would really be once a year, and he said that there was no evidence to show that doing them more frequently affects the outcome. Milestone.

Friday, 28 February, 2026

Moving took so much out of me. I had no idea that it would take this long to recover. Day six and I’m still slammed. Body pain, heavy fatigue, brain fog. I haven’t stepped outside, and I haven’t done more than a couple of half hours of organisational stuff each day. Blam!

I haven’t talked much about catch-up, or have I? That’s all the things you don’t have time or permission for while you are in treatment. So next week I begin my catch-up phase, with more to come. Week one, I see the eye doctor to restart my journey towards cataract surgery, and I go back to the cancer care clinic for my three-month (!) follow-up.. At that appointment, I get bloodwork and “onco-care,” which I assume is flushing out my port. Then I see the oncologist. Not sure what the agenda is there, but I will have questions. I also wonder if there will be more scans or the like to check how I’m doing. This seems inconsistent across the people I’ve spoken to or read about. Some oncologists or hospitals seem to do much more than others. I think in my case, there will be very little, if anything. Week two I will see someone for a knee and hip assessment in view of looking towards a knee replacement – at least I think so.

The GP visit went well. While I thought we were having two separate 15-min appointments an hour apart, instead we went in together for a full hour to see a resident. Every single thing on my list was covered, then our GP came in to talk to us further. The resident was very thorough, and I had forgotten how engaging my GP is. That and his good looks and striking tattoos made the visit feel informal … yet productive. Everything is in hand. I got a follow-up phone call on Wednesday, and I go back in a couple of weeks to tie up some ends. Done!

 

Monday, 9 February, 2026

Today was my follow-up mammogram – at last. I got ready, remembering not to wear deodorant and choosing clothes that were easy to take off. The scan was at Women’s College Hospital, where I worked for so long – although this is a new building now. I”m continuing this on its own page

 

Saturday, 31 January, 2026

Apparently, I can’t send out update reminders without paying the big bucks for a blog that, quite honestly, also costs big bucks I question each year – no matter. I have another evil plan for updating you.

Just when I thought the confusion was over, I had part whatevernumberitis the other day. While I’d been told that the surgeon’s office would be sending a referral for a mammogram to the Women’s College Breast Centre, I heard nothing. I emailed them on Wednesday (was it?) and mentioned I’d heard nothing. Back came the reply that I had to phone the Breast Centre myself for the appointment. So I did. Whatever.

The receptionist told me there was nothing until March 10, I suggested there might be something before my oncology visit on the 5th and, surprise, there was magically an opening for the 9th at 1pm. Go me!

However, here’s the funny thing — She told me that  last bilateral mammogram was  in September 2024. Oh, My. God. I have another breast! The one on the right! Good grief. I forgot it was even there. It’s gone without a scan for almost 18 months while my brain was focussed entirely on the left. Well, I do lean left. Did you know? Anyway,  that makes for double scanxiety for the 9th. Never mind. Onward.

 

Thursday, 22 January, 2026

I’m going to do this LIVE style (Thanks, BBC) That is, I’ll add to the top of the page each time. I just have to find out if WordPress sends out Update notifications. It makes sense!

I haven’t heard about a mammogram yet despite waiting more than a week to hear anything. I’m not going to chase this because.

  • I’m a little fearful of how much a mammogram might hurt when you have lymphoedema – minor reason really. It’s such a brief time
  • I don’t want to have my result too far away from my follow-up oncology appointment on 5th March. My surgeon oncologist would book me for two weeks after the test. So, maths-head on and working backwards — a mid February date would work well.

I sent my doctor’s nurse, Tess, another email about getting a heart echo test.  Supposed to be done every three months while getting Herceptin. This was my third or fourth attempt to get answers. She had told me in December Dr Watson said no echo because my Herceptin was done. I was concerned.

Hello Tess, re the echo, my last one was August 21. My Herceptin ended Dec 11 plus I had 25 radiotherapy sessions over the summer. Because all of this can damage my heart, I’m not sure why there’s been no follow-up since August to at least tell me if there’s anything to be concerned about. Please follow this up for me so that Dr Watson has some results for me before my appointment on 5th March. Thank you.

She called me. Yes, she said, You should have had a test in November. I didn’t get a call,  I said. Then you should have one, we’ll set it up and I’ll let you know what Dr Watson says. Result! Or not.  She called me less than half an hour later to say, Dr Watson says you don’t need an echo because your Herceptin is over. Sigh, I will push getting a second opinion.  My friend in Ottawa who was on the same chemo and Herceptin regime along with me had one in November, and will have another in February — she finished her Herceptin one week after me (held up by the Christmas and New YEAR schedule at the hospital.) Why such a difference in opinion?

Stay tuned for the next chapter on each.

Neurosis corner: My eye, the one the optician uttered the awful word ‘melanoma’ about, is hurting. What? Can I stop obsessing? Hmm. My body aches from the Letrozole (famously). My nose has started bleeding again. A friend from my Support Group has started losing her hair again some time after finishing chemo. I’m OK on that score (did I just jinx myself?) And I’m experimenting a little with the causes of my diarrhoea. La la la.

Matzo ball soup and a lox and cream cheese bagel
Comfort food. Asked Krish if he felt Jewish enough while eating it. A tease since he doesn’t understand the appeal. That’s how it is, though. I don’t get the appeal of bitter melon or breadfruit either… Montreal-style bagel. I’m Team Montreal, but I get the appeal of New York. Brick Lane? Maybe sometimes, but when it comes to the Beigel Bakery, I go for the cheesecake, and I miss it

Index of all my Breast Cancer Journey Posts

Breast Cancer Journey: Follow-ups and all the confusion

Maybe my most neurotic post, You are warned.

You know, one of the hardest things about having cancer was the admin.

There were so many appointments. In-person. Zoom. By email. Surveys. Online check-ins. Appointments to be made, appointments to be changed. Waiting for referral appointments to happen. With radiation, constantly checking the schedule to see if something had moved, and if it had making sure it worked and then rescheduling it or fixing whatever else was on the calendar that caused a conflict. The phone calls to get support. The intake sessions. The follow-up. The schedule of event commitments. I don’t know how many times I would say, I need a secretary! It’s a big job for anyone, but when you’re feeling sick and full of fog and fatigue, it’s overwhelming, There were often weeks with three appointments, sometimes a day with more than one – each carefully orchestrated –  by me  –  not to clash and allow enough time to get from one to the other. It was a bit like booking connecting flights. Four hospitals were involved. They were all in the same Toronto ‘hospital corridor’ but far enough apart to cause more fatigue. There was even one appointment on each of Christmas week and New Year’s week. Last week I had no appointments. It was glorious. This week there are three again, followed by a quiet stretch until early February.

On the other hand, I’m expecting a call to get a mammogram. This has been one of the most confusing things ever. Over the course of seven months, I have had three separate dates given me for the mammogram and five separate doctors’ names attached to those dates. Every time I tried to ask what is going on, the story would change. Yesterday I was determined to sort it out. I asked if I could type out my dilemma in an email. I carefully explained all the different stories I’d been given and then asked if someone could please tell me what was the correct one. Today someone called me with all the answers. Such a relief. Yet I’m the one with brain fog or chemo brain, as they call it.

You really do have to stay on top of things no matter how dizzy, tired, sore, aching, or confused you feel. My last day of immunotherapy was such a day. On that day I was to see the oncologist. He was away and a resident (?) saw me instead. I had been asking for some time when my last session would be and had had no answer. By my reckoning today was the day. I asked the resident, is today my last session? He looked at me and said, no, your immunotherapy is for two years. Another year? My heart sank but I was prepared to accept it. He left the room. Krish and I looked at each other. Two years? OK and what now? Was I to leave now? We waited a few minutes and no one showed up. I wandered out to see if anyone knew what was happening. Eventually, I saw someone with a badge and asked if I needed to stay. They went away and came back with Tess, the oncology nurse. She wanted to weigh me. I had emailed her to see if I could get a blood test if this was my last session and she’d agreed to book it. The nursing station staff had told me it wasn’t booked. I asked her again, am I getting a blood test? Yes, she said. Back at the treatment pod I mentioned it again. They nodded. It didn’t happen and I was done with asking. Nobody acknowledged I had finished. This was my last day. No one asked me if I wanted to ring the celebration bell. I sighed and decided to leave. My follow-up appointment slip showed a March follow-up with the doctor with bloodwork, and a May mammogram. It made no sense, but I was so happy to leave. The whole thing felt anticlimactic, but it was done. D. O. N. E. I was out of there.

No celebration and no will to push for it either.

What happens next? I’m not sure. A mammogram is coming up. Any other scans, I don’t know. Something to talk to the oncologist about. I also haven’t been scheduled a final heart imaging test. After months of Herceptin and radiology, both heart-damaging treatments, I hope I can get a clear picture of where things stand right now.

And I have two confessions. No, three.

    • I had to put off my cataract surgery and have only just got another referral to start the process. I’m scared. I feel like my body has been invaded enough. I’ve had too much scary recovery time. And the surgery may be two, one for each eye. I know my vision is poor. I must do it. My appointment is on 3rd March.
    • I was scared when my eyes got bad and wondered if my cancer had spread to my brain. I asked for a CT Scan and got an appointment. When they called me to set the date, I deferred it to ‘I’ll call you.’ As soon as they’d asked if I was allergic to the contrast dye, my mind went NO, I can’t do this. Enough scanxiety. Now I know I have to reconsider. I have a nevus in one eye, and the optometrist had to mention the word ‘melanoma’ when they were scanning. I know I’ve had this forever but it’s got a heftier weight now. Can I do it?
    • My anaemia and diarrhoea (both common side effects of chemotherapy) do need some investigation. I went to see a GI specialist and we talked about a colonoscopy. Even though he didn’t think it urgent, I worry that I need to get this done. Again, more body invasion worries are holding me back, and I hope there’s nothing going on that I should have hurried up on.

I do have a plan, though — to discuss it all (the longer list) with my GP in a few weeks and see if I can prioritise it all. It really is a longer list than I’m sharing here. I’m sticking to the peripheral cancer worries and, believe me, that’s enough. I’ve never claimed to not have health anxiety!

Where are you, secretary?

Maybe I need an ambassador!

I went back to Princess Margaret on Tuesday. Krish had an appointment at Women’s College Hospital, and I used Wheeltrans to get us over there. I visited the Rehab and Survivorship department, where my Lymphoedema specialist, Niki, had made me a “pressure pad” which helps drain fluid from my breast. My last one was wearing out, and how kind of her to just present me with another. I looked down from the second floor into the lobby and noticed some white objects down there so went to look. They were some of the Butterflies for Hope fundraising butterflies, each  >representing hope, transformation, and remembrance for those affected by cancer.

Butterflies at Princess Margaret
Butterflies of Hope, each with a dedication. I didn’t read them. I will next time.

I went next door to Mount Sinai to get a prescription and explained to them that I needed different tops for my medication containers. My treatment has made my nails fragile, and they were tearing as I opened the tops I had now. They replaced the top on the new container and gave me others so I could change the ones at home.

Then I went upstairs to the Cancer Care Clinic. My heart was in my mouth a bit. There weren’t many people in the waiting room, but I looked at everyone and imagined how they were feeling and what was happening for them. A receptionist printed out my next visit reminders – I’d lost them – March 5 for bloodwork, something called ONC CHEMO CARE (added to the confusion list), and follow-up with Dr Watson. I popped around to the exam room area and visited the fridge for a snack. There were people sitting there, masked and expectant. I thought about the year behind me and how familiar everything looked, moving on without me for all the people who were to follow. This is how life is.

Index of all my Breast Cancer Journey Posts