In May, I wasn’t feeling well. I was weak. I was more tired than I’d ever felt. Chemo was over, my surgery was done,, and I expected to feel better.
We were living in a new place for the summer. My niece had a friend who had a friend… This friend was going to Berlin and wanted a housesitter. For a low rent, we’d be living in her two-bedroom house. We were about two weeks away from having nowhere to live. We took the summer lease. It was a nightmare. The house was large but stuffed in every corner, every drawer with furniture and lamps and every ornamentation you can imagine. The fridge was bursting with food, the freezer was stuffed to the brim, the closets were the same. Where were we to put our food, our clothes? And the stairs. They were long and steep. I was about to have surgery. I could barely manage the stairs already. I decided in advance that I would have to stay upstairs in the bedroom (also stuffed with furniture and effects (claustrophobia et in). The bed was very high. But there was a balcony. I had the door open much of the time until Krish said too many flies were coming in.
The scary stairs. For days I couldn’t use them. When I could, it was like Mount Everest
And here I was weak and trapped. The three months ahead felt daunting, punitive, impossible. I knew we would make it but there were times I plunged into depression and anger. How was this my life now?
Stuck in the bedroom, crawling to the bathroom, all I could manage. The view and the open balcony door helped. Could I venture out there? No! Getting out of bed was a major energy drain. I went out once and felt the vertigo pulling me over the edge. No!
The weakness started to worry me when even getting out of bed or brushing my teeth or even turning over in bed was an incredible effort. Going to the toilet and back taxed me and my heart would thud alarmingly each time. I emailed the nurse to ask could I please have a blood test to see what was going on. I’m glad I did. I had anaemia. The doctor came to my chair to tell me that I could have a blood transfusion the next day or I could begin iron pills instead. I chose the pills. I was to go to my GP to see what else might be going on. I shouldn’t be anaemic this long after my chemo had ended.
That evening I went to the GP’s office to see the urgent clinic team. They said that I could be called to come in for an infusion the next day or Monday. They assured me that I would recover but it would take time. They described it as me ‘running on 75% battery’ – I felt it was more like 10.
No call arrived. On Monday I called the office who said they would look into it. On Tuesday I called them again and left a message, I needed a call by 2pm or I was calling an ambulance. I called. Two paramedics arrived and after some testing they asked if I wanted to go to the Emergency department. Yes! Once there and speedily behind a curtain I started to feel like I might pull through. I was there for hours getting several types of tests. Eventually around 8:30 they asked if I wanted an iron infusion. Yes! Krish and I ate turkey sandwiches – so much better than at Mt Sinai – and finally went home with some hope.
It’s now 31 December. I’ve been taking my iron pills since that emergency room visit. My iron levels are considered good. I don’t know what happens if I stop the pills. It”s a question for my GP, who I will see in about a month. I never want to feel like that again. Ever.
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. IÂ 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.
Boob picture. The left was red. It’s now brown. It’s interesting and I don’t know if they will ever match again – in colour, that is You can see the Mepitel film on the left breast.The radiotherapy tableYou’ll often find notes like this at nursing stations. Notes from others who’ve finished their treatmentsMe all set for my session. A nurse asked if I wanted a photo and, yes.The tools of the trade, Snorkel and nose plug. Hated that nose plug.Radiotherapy damage. They radiate the breast, the underarm, the collar bone, and upper back
That’s the face of someone who’s glad all that is over
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.
Pathology results (if you like [- and if you don’t, they were good):
Pathology & Laboratory Medicine 600 University Ave., Suite 6-500, Toronto, ON, Canada, M5G 1X5 t: 416-586-4800 x4457 f: 416-586-8628 Clinic ID: WCHOR Medical Record # WCH5407073 Clinic Name: WCH (WSU OR) Last Name: xxxxx Operating Rm Physician: LIM, DR. DAVID First, Middle: JANICE, SUSAN Procedure Date: 2025/05/06 DOB/Gender: 1947/03/06 / Female Accession Date: 2025/05/06Â Â Report Date: 2025/05/15 Visit #: WCH10586118 FINAL SURGICAL PATHOLOGY REPORT SPS-25-12760 Copies to: PATHOLOGY DIAGNOSIS 1. Breast, lumpectomy (LEFT, revised anterior margin): – Breast with extensive reactive changes consistent with prior surgical procedure – Negative for carcinoma 2. Breast, lumpectomy (LEFT, revised posterior margin): – Breast with extensive reactive changes consistent with prior surgical procedure – Negative for carcinoma Specimen: 1. REVISED MARGIN, LEFT BREAST, ANTERIOR 2. REVISED MARGIN, LEFT BREAST, POSTERIOR Clinical History: Gross Description 1. The specimen container is labelled with the patient’s identification and as “left breast revised anterior margin”, and contains one piece of fibrofatty tissue that measures 3.8 cm 12:00 to 6:00 x 3.1 cm 3:00 to 9:00 x 1.3 cm from the old to final margin. The specimen is oriented with a short suture marked final margin, and long lateral at 3:00 as per the requisition. The final margin is inked with silver nitrate, and the 3:00 half is remarked blue. Tan-pink, smooth capsule is present at the old margin. Submitted in toto: -1 to -2 12:00 margin, perpendicular -3 to -9 intervening tissue, 12:00 to 6:00 -10 to -12 6:00 margin, perpendicular 2. The specimen container is labelled with the patient’s identification And as “left breast revised posterior margin”, and contains one piece of fibrofatty tissue measures 3.6 cm 12:00 to 6:00 x 2.1 cm 3:00 to 9:00 x 2.2 cm from the old to final margin. The specimen is oriented with a short suture marked final margin, a nd long lateral at 3:00 as per the requisition. The final margin is inked with silver nitrate, and the 3:00 half is remarked blue. Tan-pink, smooth capsule is present at one aspect. Submitted in toto: -1 to -2 12:00 margin, perpendicular -3 to -6 intervening tissue, 12:00 to 6:00 -7 to -9 6:00 margin, perpendicular Grossed by: M. Lin, Pathologists’ Assistant Miralem Mrkonjic, MD,PhD,FRCPC.Pathologist
(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.
The dreaded “cheese” sandwich. At first we brought snacks but soon the pantry became the best option
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.
My companion, Krish, fetching food, warm blankets and pillows, unplugging and plugging my IV machine in, and propping me up to go to the toilet. It’s rare he sat down. The nurses tried.
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,
My “lucky” slippers. I wore them to every session. I have yet to wash and wear them again now. Can I handle the association?
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
It’s a bit like having the flu but for a long time. Some days you feel like you could do just about anything, but when you do you quickly find out you were wrong. Some days you know you can’t do anything but you try anyway. You find out for yourself what your pace needs to be. Sometimes you overdo it and pay the price. So how do my days feel? I do have some where I feel fairly well and can cruise through feeling satisfied. However, on the whole, I just don’t feel like my normal self. My nose bleeds all the time, my hands also bleed with cracked knuckles that feel sore. There are minor to Major dizzy spells especially with standing up or making sudden moves. It’s almost identical to benign positional vertigo, something I’ve had throughout my adult life. So is this just like it, or is it perhaps exactly what it is dredged up by the inevitable stress? I’m grateful to not feel nauseated, although there are hints of it at times, but my gut is not happy. I have diarrhea and almost diarrhea everyday. Not sure how to tackle this beyond what I’m already doing and I hope settles down with time. I’m lying down a lot of the time, with my heating pad for comfort and trying not to feel guilty for it. Yesterday was my surgeon appointment. My original surgeon has now retired, and luckily I was not attached to him having seen him only twice for a very short periods. My new doctor is David Lim. We left home around noon with a cab two Women’s College Hospital. It was a roundabout route. We pick somebody up at Queen and Bathurst, then over to her destination on Church Street and back along Carlton and to the hospital. The snow Banks were a real impediment both as I was leaving here and for the woman that we picked up. By the time we arrived at the reception desk for my appointment I was motion sick. Krishna had a nice discussion with the receptionist who was the same one he used for the psoriasis Clinic. Home away from home. He’ll be back there tomorrow- Wednesday – to meet his new dermatologist. So it’s three hospital visits for him this week. We were escorted in to see the doctor, who cruised in with a smile. Dr Lim is a good looking, young man with an easy personality. Kudos to him for speaking directly to each of us, a very nice bedside manner. He explained that one margin showed evidence of some tiny cells- he may have said calcifications, but whatever they are removing them decreases the likelihood of a recurrence. It seems that I’ll receive a mammogram one week after my chemo ends. That will determine what might be in there and where. It’s also true that the surgery may be purely precautionary and this is a choice. It will be a small surgery compared to the last, but still about an hour, a day surgery with the same sort of … this was pretty easy as in October. He will meet me again over Zoom and then not until the day of surgery. That would be late April early May. Following this at some point radiation would begin. It does sound like a choice, but one I think I’ll probably make. There was no mention of a mastectomy as I feared, so there’s that. We left the hospital I walked over to the Service Ontario office where I could renew my health card. This was pretty easy and I didn’t have to wait long. When it came time to get my photo taken I asked about my head scarf. Is it for religious reasons, she asked. No, I replied, it’s for cancer reasons. There were no more questions after that. Krista has gone to Ikea to buy candles had he showed up to work with me to the food court. There was the usual scramble to find something that we could enjoy. I thought about getting chat at the Indian place but we decided instead to get a KFC combo of to snack wraps with a small fries and a root beer. From there we bought a couple of things in the farm boy, two chocolate bars in the Dollarama, and over to meet our transport back here. It was an easier route back and when we arrived we found the snow bank had degraded into a slushy mess. Helpful. We both felt exhausted and faded into naps before eventually making a joint effort for a soup and sandwich. Once again there is meat in the fridge, bought to save money, and who knows if Krishna will cook it before it has spoiled. This is happening more and more often and must be resolved. We are tired. We watched a couple of episodes of prime target- I’m losing interest – before I fell into bed at around 10:30
We had a massive snowfall. It took the city days to dig everyone out. There hadn’t been that much snow for years. Krish and two other men were working on clearing a path for hours. My heroes. I was happy to stay indoors as much as possible.
I’m putting a bunch of photos below of some of the things I photographed. Many are not pretty. Look or not… Space for those who don’t want to. Scroll down or out.
My eye. It got worse. It lasted for weeks. Nothing helped. But I’m wearing my Primark scarf. £2 worth of pleasure.
Bruises, bruises. everywhereThere’s not any part of my arm they didn’t try. Chemo needles are larger than blood drawing needles. They can do a lot of damage to your veins so you need to keep trying new placesWhen my skin got inflamed they stopped using adhesive tape and went to gauze. (I’m allergic to many adhesive bandages.)My artm at its worst. They wanted to use my port for weeks after it was inserted but it wasn’t healing quickly enough so I had to grina nd bear it.
This entry is a bit messy but was written the day I had one of the worst chemo days. I’ve decided just to post it with little editing since I think it shows my state of mind.
Today was a bit disastrous or let’s make that disappointing. In the morning we got ready for the WheelTrans ride. It was arriving at 8:15. At 8:10 I went to sit on the balcony I noticed a Back Taxi sitting there. After a couple of minutes the driver called to me sayingm are you for WheelTrans. I said yes and he asked if I had anyone coming with me and again I said yes. Is he ready? I shouldn’t be parked here. It was 8:13 and I reassured him Krish would be right out. And off we went. I was not expecting a taxi but a bus. The driver said it was TTC’s call on what you get. We arrived at around 8:45. I didn’t mind since I had time now to talk to the nurse about my IVs. But when I went to see her she shooed me away, saying blood work first. I did manage to get in a little early for that. I mentioned my concerns to her and she agreed to using the area of my arm that seems okay. She also said she thought the IV could be used all day by everyone. Yay. Out in the waiting room they sent me see the nurse. I had a little time before my bone scan injection. The nurse, Tess, thought there was a possibility I’d had an allergic reaction to the tapes, and she may very well be right. She redid the taping by wrapping gauze around the catheter and using copious amounts of paper tape. It felt comfortable, slightly tight but OK and much, much better. Off to the nuclear medicine Department. The lady I spoke to there – I suppose a technologist – was very nice. She was pleased to be able to use the IV line already there and gave me the injection. Yes, the test really did take about an hour and they would be right behind the window looking in on me and making sure I was okay. No, they could not chat to me. She sent me away saying I needed to be back at 1pm and I told her my treatment was the deciding factor on when I could arrive. I sat in the waiting room for a while wondering what was happening, then finally went up to the window and said I need to be told as they were waiting for me at Pod E.
I don’t know how much time was wasted, perhaps 20 to 30 minutes? But they got started pretty quickly. Apparently, my potassium was still low after 2 weeks of supplements and that big bag of potassium on the first day of treatment. So I needed another one and another prescription. Damn. I had been taking the potassium every day as well as eating one banana and recently white beans and orange slices and even diluted orange juice. What is going on? I noted on my blood test paper about six highlighted items, including neutrophils and hemoglobin. Sigh. But we got started. Potassium was going to run throughout and here we go with the pre-meds. Lily came by to warn me when the Benadryl was starting, because I told her how much it had affected me the week before. I wasn’t doing too badly, since I expected this heavy drowsiness now, but all that liquid meant I needed to pee often. The first time Krish took me, then the second time he was sleeping, so I went alone. Mistake. I was so woozy and it scared me. I barely made it to the toilet, was glad I was wearing a pad although it was now soaked. I honestly don’t know how I didn’t pull the help cord. But I stood up with my head swimming, my legs buckling. And my heart hammering so quickly I was afraid I wouldn’t make it to the door. I got over to the nurses’ station, mercifully close to the toilet and told them, my heart is racing. They helped me over to my chair and suddenly four nurses surrounded me. Taking my temperature, putting the oxygen clip on my finger, taking my blood pressure and pulse and saying it was climbing. My heart apparently was fluctuating. I’m going to die, I thought. (“Cardiac” kept being said – what??? Argh)Â Â Obviously, I did not die, but all I could think was what a drag this was happening. I had still put off changing my will! They took me over to a bed to get an ECG and it was pretty fast. And they took my blood pressure yet again. Both seemed okay. Could I make it to the Bone scan? I was already late and making it there meant missing a CT scan, a shorter procedure booked for 3pm., only 40 minutes away. So I decided it would be better to rest a bit longer, cancel the bone scan and go for the CT. Best laid plans. We took an Uber home and I went straight to bed. Feeling better now, but somewhat exhausted, yes, disappointed. How much of the Taxol did I get and how much has this set me back? Apparently the doctor had decided not to challenge me with the rest of the chemo that day, and to adjust it the next time. I suppose my questions can wait till then. I am hoping my bone scan can be done on a non-treatment day. Memo to John later- I feel scared about what happened today. It makes it a little tough to think about sleeping but I know I must. I confess to thinking about Liz and what you went through that day. I am determined not to let that happen to you again. I’m not Liz of course but i did think of her and hoped she was there to protect and not beckon me. Love to you, John*
Herceptin is known to affect the heart. I have tests every three months to make sure there is no damage. They say it’s usually reversible. I am waiting for a new test now (2 Jan 2026 as I write this) and am a month overdue. Letrozole, the hormone-blocking drug I will be taking daily for the next five years, also affects the heart – it increases blood pressure and cholesterol levels. Radiation is also known to damage the lungs and the heart (particularly when it’s targeted to the left breast.. I don’t like the test, especially since it’s on a high floor reached by an elevator that stops on every floor at Mt Sinai Hospital, Toronto – have I ever talked about my fear of elevators? – but I’m hoping they contact me soon before my fear causes palpitations! Neurotic, moi?
*My brother, John, was visiting his wife Liz who was in hospital. The details are his to tell but this was after a long set of illnesses and events. Short story then. He went in see her after a night’s sleep, she told him she felt unwell and began to worry him with directives. Then she died. I miss her.
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.
