Author: Janice

Photos at the end,

In 2002 I had radiation in London. I had had surgery in Toronto and was about to leave for London when I got the news. In 2002 Dr Holloway announced my margins were clear and so were my lymph nodes. I needed radiation for insurance and then take Tamoxifen for five years. I opted out of the Tamoxifen (In hindhight, was it a  mistake? I’ll never know.)  I soent some time emailing with the recommended hospital, St Bartholomews, and they agreed to see me for radiation. I hadn’t been in London for long when things started and, although I had a good knowledge of its geography from before, it was an adventure finding that old-fashioned radiation clinic in that old- fashioned area of London between the Barbican and Smithfield Market. I was going back in time on those streets.The area was magic and I got to know it very well in the following days and years.  Cloth Fair, the Barbican, Smithfield, New Change, London Wall — I loved it. I arrived to find the tea trolley making its rounds – I was home. They gave me two tattoos – large black spots – to the right of my left breast and just under my arm. They hurt so much I wondered how anyone could bear a real tattoo. Ouch.

I lay on a table and listened to the clanking and whirring and found myself tearful – this meant I had cancer. Me. I got along fine with the treatments until they were almost over. In those last few days my breast became sore,  the skin slightly infected. I took antibiotics and lathered my breast with a cream that I bought in Boots – an enormous jar cost me £2.  I got a UTI. It was the worst thing ever. I had no GP and the first one couldn’t examine me, for religious reasons. I suffered until a day or two later a nurse examined me and I got more antibiotics. Nothing changed. I saw blood when I peed, if I could even do that. I discovered if I lay in the bath and peed there, it worked without screaming pain. I spent hours in that tub.

As part of my post treatment I went to The Haven, a fgrand house at Fulham Broadway that offered complementary therapies to cancer patients for free (no longer there – such a pity). A herbalist suggested I try dropping the antibiotics that I was on again for the third time. She said that it was killing my good bacteria, why not try a natural method. She prescribed me a very concentrated cranberry pill, concentrated cranberry powder, and probiotics. It wasn’t cheap (especially in those lean days) but, say what you may, my infection cleared. I was a believer. And then it was all behind me.

Fast forward to 2024. How things had changed.

I was introduced to Dr Jennifer Croke at Princess Margaret Hospital, Toronto,  before Christmas 2024, the same day I met Dr Watson. I loved her immediately.

I wish I had her for everything oncological. She’s a straight talker, yet every visit feels intimate. I feel listened to. She arrives asking questions and giving me instructions that let me know she knows me. If I see her in the hospital lobby, where she couldn’t possibly have cheated by reading my notes, she refers to things that let me know she’s on top of who I am and what’s going on with me.  ‘I was in London last week,’ she says. ‘I could kick myself for not going to St Barts and demanding your files.’ The files never came.

I was angry and exasperated about that.Ii tried every avenue, as did Dr Croke. I got PALS involved but, after their second email, they ghosted me. I  even wrote to the CEO asking for intervention. I got no reply. I was abandoned and with no idea if my coming treatment was the right one. The saintly Barts lost its halo then.

Back in Toronto, at Canada’s and one fo the world’s best cancer hospitals, Dr Croke told me that, based on that info never arriving, she would go ahead with her best guess treatment. She would do a gentler treatment over a longer period – 25 instead of 15 sessions. I would get to know that radiation unit and the nurses very well.

It begins with a test day. A nurse instructs you on the procedure and introduces you to the ‘snorkel’ and the  breath-holding technique. This is a new thing. I didn’t have it in 2002. They had made a simple discovery,t hat if you held your breath your rib cage moved to protect your heart from the radiation. Your lungs  are another story. Time will tell. Yes, the radiation can affect the lymph nodes in your neck, your heart and your lungs. It can cause fibrosis, hardening and shrinking of the breast, burns, skin and breast infection. It’s not just a fancy X-ray. After this education you go into a radiation room where they take images and measurements and also get tattoos to mark the limits of the scan. This was far easier than my first time. Tiny marks were made. I can’t even see them. I was ready to start treatment.

During June and July I went every weekday to that radiation clinic. I was still anaemic and it wasn;t easy but I did it. I even made friends with my snorkel. The appointments were almost always on time and even early when I arrived earlier than expected. I scanned my card, walked down to my unit and waited to be called. There were two or three nurses on duty each time and they were very friendly and chatty. It was almost impossible to feel nervous. I removed my tops and was settled onto the radiation table, arms secured and positioned just right. A nose clip was placed on my nose so I couldn’t breathe that way, and the snorkel – a flexible hose with a mouth grip – was put into my mouth. I’d be breathing through this.

The nurses measured and exchanged numbers and information. My job was to stay still and follow instructions. The room was big, the machine was like a CT scanner with a drum that could track around the area for radiation. I learned that there were usually ten blasts of radiation, some short, some longer (no more than 15 seconds) and that there was a sweet spot for the noseclip where I didn’t feel I couldn’t swallow. I also learned that I could use my fingers to keep track of each blast. This helped me know where I was in my session and always encouraged me.

Push the button. Deep breath in….Breathe normally.
Push the button. Deep breath in… Breathe normally.

My thoughts would cycle during every session. I’m here…again – was it like this before? I have cancer. The noise is telling me what’s happening.  The sliding, the rotating, the whirring, the nurses’ voices, the familiar sound of a camera capturing images. The nurse will come in to readjust things now, maybe more than once. They will leave the room again to sit in the control room and we’ll keep going. Blast after blast, minute after minute, appointment after appointment. Then it’s done.

And the chimes. Each time they left the room, an electronic chime would sound. It sounded like Big Ben. It made me smile. The day my radiation ended, I felt that I’d miss coming here. The nurses assured me there were far better things to fill my days with. Of course.

After each treatment there’s an option to see Dr Croke or a skin care nurse. First come, first served service here. When I started to notice skin changes, another nurse moulded Mepitel Film, a clear silicone dressing, to protect my breast. When the treatment was over, I thought that was that but I bore in mind that most of my problems in 2002 had come in the final and following days. It was the same now. I got bad burns on the skin around the Mepitel. Two nurses and a doctor all squinted at it. I got steoidal cream and a warning to keep doing saline soaks. The cream did the job in the end.

Today my breast has a large dent where there was once a smaller one – with scar tissue. The left breast is noticeably smaller. On the bottom and to the right side of the breast are hard bumpy areas. They told me it’s lymphodoema and fibrosis. Perhaps one day it will go away, perhaps not. I have to wear a compression bra. It’s heavy, expensive and restrictive. It’s also ugly. I got it at a lovely shop that I found from a hospital pamphlet. It’s called After Breast Cancer, a charity that offers a prosthesis (yes I have a fake semi-boob now when I want to look even). I also got two bras for free. Neither is attractive. Earlier in my journey I bought a nicer light compression bra – no lymphodoema then – it looks like a sports top. I am biting the bullet to buy another heavy compression one from the same people. Every other day I sit with my notes and watch television as I do the many part drainage massage on myself. My insurance doesn’t cover a professional massage therapist. I have no insurance to cover special bras or massages even though they are essential to my health, but I hope that it will all count when we do my taxes.

I will see the lymphodoema nurse again during January, then Dr Croke for an annual follow-up later in the year. I will spend some money on a professional lymphatic drainage massage to learn the ropes better.

For the very curious, here’s an audio  recording of a radiotherapy session. It’s 15-20 minutes unedited.

Index of all my Breast Cancer Journey Posts

Photos follow

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5 May, 2025

Second surgery? Yes! (Here’s where I might repeat myself but I don’t know if everyone will read everything so overlaps are bound to happen.) About a month after my first surgery I went back to see Dr Escallon at Mount Sinai. We waited a long time for the doctor to appear, bustling in. I’d get used to this in future visits at the medical oncologist visits that were to follow. His stay was alarmingly brief – I recorded it so I  missed nothing and, playing it back, it was about three minutes long. The surgery had gone well BUT (casually mentioned) the margins weren’t quite cleared.  I was to see a medical oncologist who would decide whether I’d need chemotherapy. Radiation would also possibly zap that margin. I felt my anxiety ramping. Do you think I’ll need chemo, I asked. He glanced at my report. In my opinion, no, he said. I relaxed a little. There was a possibility that a second surgery might go ahead. There were too many maybes and perhapses. I left there mustering all the optimism I could. More of the waiting game. I was to realise more than before that much of this journey was about waiting. Waiting for appointments, waiting for doctors, waiting for scans, waiting for results

The reports of what happened with those two doctors are here.

I got a notice that Dr Escallon had retired and I was booked to see another surgeon. He’d agreed to do my surgery. Krish and I went in to see him. Dr. Lim is a tall attractive Chinese-Canadian man. He was the youngest person in my assigned team and had a personal and friendly demeanour. He said my surgery was going to be easy and that I’d recover more quickly this time. Although Dr Croke, my radiation oncologist, had suggested a mastectomy, he thought it wasn’t for me. ‘At my age’ it would be a challenging recovery. Whether I got radiation afterwards would depend on the result and what information they could get from Barts in London. I had been trying with no success to get answers from their Health Records. Dr Croke had also been trying. Silence.

Not as many pre-surgical things this time. There was a mammogram. Then I had a repeat of the online appointments with three different departments. On the day of my surgery, they put wires in again. I was still nervous but told the new anaesthetist my wishes. The greyness took me in. I woke up much drowsier this time. When we left the hospital I could barely make it to the cab. I felt pretty awful, close to fainting, to be honest but I made it home and resigned myself to more couch sessions.

My results were delivered via Zoom. My margins were now clear and my follow-up mammogram would be pushed to the end of the year. The surgeon, not Dr Lim but his holiday replacement, was all smiles. This time my tongue wasn’t numb.

I’d survived another surgery. Yay me.

Index of all my Breast Cancer Journey Posts

Pathology results (if you like [- and if you don’t, they were good):

January 9 to March 29 and beyond, 2025

(I’m reserving photos to the end of this post since there are needles and other potentially triggering images. There’ll be a space before you get to them. I’ll drop some ‘easy’ ones in the main body.)

I couldn’t write about chemotherapy, except in chats. Even in email I tended to answer tersely, not knowing what to say.

So what’s it like? What was it like for me?

 

Chemotherapy started on 9 January. 2025.

I was getting a drug called paclitaxel, Taxol. Along with the Taxol I’d have pre-meds each designed to minimise common  severe allergic (hypersensitivity) reactions – steroids, antihistamines (Benadryl), and H2 antagonists before the infusion.  Before each session, you’re weighed, vitals taken (temperature, oxygen levels, blood pressure – mine was always too high, They take blood before each chemo session to make sure you’re strong enough to go through it. At first this is from a vein in your arm, as usual, but chemo drugs are strong and can damage your veins so a port that bypasses this site is inserted surgically at some point in your journey. i waited quite a few weeks for mine. Another story.

Once the blood test results are in, about 45 minutes later, they’re relayed to the medical oncologist who approves the session and orders the drug to be brought to your station. This can make the appointment time quite long, the waiting. Mount Sinai’s chemo care clinic has about thirty chairs and a half dozen beds. It’s a busy clinic and starts to feel familiar all too soon. There are pretend skylights on the ceiling and the air is cold. I would settle in on my assigned and reclined chair, wearing fluffy slippers -my feet elevated, wearing comfy clothes, and tucked in with a warmed blanket and a couple of pillows. There’s actually a feeling of being pampered despite the circumstances. There’s a pantry room  nearby and a visiting cart offering simple sandwiches, jello, apple sauce, juices, cheese, crackers, and sometimes cookies – you’re encouraged to eat well to help you tolerate these sessions. But those sandwiches – ugh. The pantry is there due to a generous sponsorship. Thank you, sponsors, but please improve the sandwiches. There’s cheese (white bread with a slice of American (plastic) cheese, egg salad – more like chopped egg with a suggeston of mayonnaise, tuna salad – the fishiest yet blandest scrape of fish, yet the one I chose the most often because it had a taste.

Saline solution comes first and drips in slowly the entire time. The pre-meds come in small bags and go through quickly. You aren’t really aware of them. However, the Benadryl was a real problem for me. While some people found it relaxing, it would make me intensely drowsy and even unwell. I dreaded this one. All the liquids, including the ones you’re encouraged to drink, fill your bladder quickly and that meant I was walking to the toilet often. I learned after the first week to wear sweatpants that I could easily take down and up to avoid accidents. Mostly, I felt I was sleepwalking and clung to my IV pole for support. Zombified was the word I used – frequently.

A second drug that helps with HER-positive cancers, Herceptin, comes next. I didn’t notice it. The nurse warns you when your Taxol is coming. I didn’t feel any different. The whole process takes about two hours. I will get the Taxol every week for 12 weeks,  Herceptin every three weeks for about a year.

Apart from one episode I’ve blogged about, the worst thing for me was the IV insertion. I have tricky veins – small and deep. My arms were butchered. On my second week I had a bad red, sore and itchy reaction on my arm, and almost every week I had black bruises and swollen arms. The nurses and the doctor weren’t bothered. Their various reactions – skin reaction, allergy, Infection – I had steroid ointment and also antibiotics – my skin stayed more or less the same, No one blamed the actual IV insertions.

I wasn’t looking forward to the port but I was suffering without it. I asked if it could be bumped to an earlier date and was told that everyone wants it sooner. It felt unjust in a triage system.

There’s not much to say about the port going in. It’s a surgical procedure under sedation. a catheter goes into the vein above your collarbone and a round plastic ‘port’ is inserted lower in your chest. My surgeon was friendly and talked to me about what was happening. He left the room at some point muttering about ‘close to an artery’ (what?) and afterwards said my veins were tricky. Yep. The procedure took longer than expected but it was finally done. It took three or four weeks before it could be used. The healing was slow and my veins still didn’t want to cooperate. Now I had a sore port insertion site and bruised and swollen arms. On one particular day, when my port was said to be ‘clogged,’ my arm was used again. When my IV was finally taken out I showed the nurse how swollen my arm was. He shrugged it off. I asked for ice. The swelling didn’t go away and my arm got numb, red and tingly. It was like a thousand bee stings or the worst carpal tunnel syndrome you can imagine. Later we read it might be a ‘chemo burn’ where the chemo drug leaks straight into your arm. Despite many questions, no answers ever came. I’m writing this section in early December. My arm finally feels normal, but now and again if I use it too much, the heavy tingling starts again and I have to shake it out. The gift that keeps on giving, my cancer friends would say. I did keep bringing it up with my doctor, who first thought about ordering an ultrasound to see if I had a blood clot (great!) but then said it was an allergic reaction, take antihistamines. I beg to differ.

Side effects? It’s different for everyone. There are many types of chemotherapy drugs and they have various similar and different lists of common and rarer challenges. While in chemotherapy I saw some people retching, vomiting, being surrounded by medical staff when some unknown (to me) reaction happened. One man was wheeled speedily to the emergency department. Some lay weakly in the beds with eyes closed or wide open. Some sat in their chairs with laptops, tablets, talking on the phone, like they were getting a manicure and not having toxic drugs dripping into their veins. Overall, the ward is quiet. There are lots of nurses – perhaps a dozen,

I was spared nausea most of the time – I had drugs for this, just in case, and twice I took half a pill – but many days I was too dizzy to stand. On those days I would feel I was blacking out. I considered the fact that this was the end. It wasn’t. Diarrhoea was a constant. Still is. Fatigue, yes. My nose was bloody every day and my eyes felt so dry it was if someone had scoured them. Eye drops did nothing to help. I developed blepharitis and many weeks of a very swollen eyelid. Nothing I did made it feel or look better, including antibiotics. Many days were spent lying on the couch napping on and off while the TV showed inane shows and movies. My audiobooks and meditation audios were friends in those days and continue to be so.  Except for hospital visits, I saw no one. I spoke to no one. I chatted online a lot. I took a couple of weeks off work and then worked only a few hours. Life had changed and I didn’t know when or if it would ever come back.

My last day of Taxol came on 29 March. Hooray.

My last day of Herceptin came on 11 December. Hooray.

A note: Oh, I lost my hair. Not everyone does apparently. You can also get a ‘cold cap’ which looks like a hairdresser’s dryer hood attached to a machine. I see a few women with those but I had no real interest. I want to talk about my hair but I’ll do a separate post for that.

A real-life email to myself (sic): 29 February, 2025

There is so much I didn’t blog about so I’m going to try to catch up. Time has now passed and things are foggier.  I’m going to back up a bit before starting again. I waited 4 to 5 weeks to get my results. I felt confident it would be a similar story to the last time. That time no nodes were involved and radiation was the only thing I had to go through. At the surgeon’s appointment there was the inevitable long wait.  He showed up eventually telling me it had gone well, but that one node was positive and one piece of a margin showed some cancer cells. He felt radiation would help that and quickly mentioned that otherwise it might mean some chemo. I asked him if he had an opinion on that and he said he didn’t feel the chemo was warranted in this case. My heart sank knowing that one node was involved. This changed everything. Sadly, my visit lasted only 4 minutes, and seemed hardly worthwhile. The medical oncologist would call me within two weeks and it would be a decision between the two of us. So that was that.

I waited for that phone call for 2 weeks and it didn’t come so I called them and within a couple of hours I had an appointment.

My brother, John, who was visiting us in Toronto, came with me to the medical oncologist appointment.  I liked the medical oncologist. He was Irish and very different than the surgeon. This one’s name was Geoffrey Watson. I met with the social worker Victoria and a nurse called Miriam who enrolled me in a study where I would be given a blood test to determine my genetic markers. This would help the rest of my family to determine their risk factors. They will be thrilled. Not. Doctor Watson told me that I would be having chemo, the light kind, or I could decide on a heavier regime. I didn’t have to decide immediately but it would start in January. And, holy cow, more surgery for that pesky margin. I couldn’t believe it. He said, we don’t want this coming back do we and it’s your best chance.  I could stop the chemo at any time if I was unable to tolerate it- here my brain switched to they think I may not be able to. This comes from having had my tonsils out when I was 6 years old. The nurses kept visiting me after that surgery asking, do you want to be sick? My 6 year old brain heard this a few times before thinking, they think I will be sick, and I promptly was. Long story about getting my tonsils out, a story for another day. Bottom line, he considered me cured but let’s never let this happen again. It wasn’t till later I wondered how he could say cured in the same breath as cancer cells are still in the margin, that I had had a positive node, and oh yes one tumour was HER positive, not a good thing. And yet he said, your prognosis is excellent. So why did I feel so bad?

After seeing Dr Escallon, I’d felt reasonably relaxed about what lay ahead. This was familiar ground. I’d have the radiation and everything would be as it was. It seems that after I’d seen him things had changed. Were there further results that clinched this new regime? If so, why had they not been available at that meeting and why had I even seen him if everything wasn’t known yet? I don’t suppose I’ll ever know but I do know that the surgeon visit hadn’t prepared me for the visit with Dr Watson.

Right after that I went to see the Radiology oncologist,  Jennifer Crooke. She’s at Princess Margaret Hospital, which is next door. We didn’t wait very long to see her and I liked her right away. She was relaxed but efficient, sweeping in like she’d known me a long time. She explained that she’d need to see what St Barts had done to make sure she knew what she could do. She may not be able. She drew some pictures for me of the little lingering cancer cells, explained the different chemo approaches, and explained the HER effect. She said those little complications were unexpected but showed up later. Lucky me. I would probably have a smaller, shorter surgery for that margin, but had anyone discussed a mastectomy with me? Well, no! She said the radiation would make my breast even smaller and harder, but I could have a reduction on the right side to balance things out. I told her I was happier with the thought of fillling out the one on the left with something in my bra. At my age I wasn’t going on any nude calendar after all. Geez.

There were always three of us in those rooms. Both doctors, with their separate styles, were routinely (Dr Croke more personable and empathetic) telling me the facts. John was quiet but later seemed confident things were pretty good. I was the one who was stunned and a little scared. What did all this mean? Was I going to be OK? Why weren’t things going like they did in 2002? And was it really that simple then? Probably not. It was, however, very clear that I was on a very different path this time.

Index of all my Breast Cancer Journey Posts