Category: Personal

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.

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

This section may not interest anyone but I think it’s important. Feel free to skip it. Also feel free to poach from it and ask me anything if you know someone who could benefit.

The last time there was a lot of support. Thinking back, I know I was in touch with an agency or charity that phoned me every day and who visited me in my home, leaving me with a little care package. I had an online group that was somewhere in Nova Scotia, a very supportive group of women at various stages of breast cancer. I also went to relaxation sessions at Wellspring who had a satellite office near where I worked.

After my surgery, I went to the UK. I sent an email to the appropriate Department at St Bart’s Hospital asking them what the procedure was for getting radiation therapy and they responded quite quickly, letting me know that they were registering me with one of their doctors and when and where to come. The UK system, well supported by various departments and charities, could not have been more rewarding. There were home visits, free complementary Therapies at The Haven in Fulham and in-person support groups through the local hospital. Going to radiation was tiring but interesting, since the hospital was in a very historical area which I was able to explore as I could. I liked to walk from Liverpool Street Station and through the tunnel at London Wall. If I had time I could go look at the wall ruins. London felt new, although familiar, and the first few times I got a bit lost.

The radiation department at Barts was away from the main buildings. The waiting room was old, but the nurses were helpful and friendly, and ready with tea and biscuits at each visit. A hospital worker called me to explain that I could get all of my fare money refunded, and if necessary I could get Hospital transportation. I also received two gifts during my treatment time. One was a gift to buy a new mattress, and the other a gift to fund a short holiday.

My support group met weekly at St Joseph’s Hospice in Hackney, where we were served a delicious vegetarian lunch and were treated to complementary therapies such as Reiki, reflexology, and pilates classes. At the Haven I also had interviews with a herbalist, a homeopath, a masseuse, and more Reiki. When this all ended after ten years (We don’t need to see you anymore) I felt bereft.

Fast forward to 2024. Whether it’s Canada or these more stringent times, things are quite different. I contacted the Cancer Society who sent me resources and chatted with me at some length. I haven’t heard from them again.

I gpt in touch with two organisations- Gilda’s Club and Wellspring. I spoke to counsellors in both places-all support, or most of it, is virtual thanks to Covid. Things haven’t returned to pre-pandemic rules yet. I’ve taken one Wellspring class, which was an online visualisation session. I will do more with Wellspring once I have time to check their offerings. For Gilda’s I’ve had two phone calls and filled out several forms. Many of their classes are not until the new year but I’m expecting to fill in with things in the meantime. There are other organisations I have yet to contact. I can arrange individual counselling sessions but one step at a time.

Update January 2026: There’s so much support if you look for it. It’s odd to me that many don’t know or don’t care, but that’s me.

Gilda’s – there are many virtual offerings.  I’ve taken meditation, yoga nidra, support group, art therapy, reiki, and perhaps more. One of the best things was called Prep Talk where all of my questions about seeing the doctor were considered, curated and fed back to me in a format I could use.

Wellspring – a mix of virtual and in-person groups. I’ve taken only the virtual. Wellspring programs feel more ‘serious’ and I’ve been a bit more selective. There was a cancer support group (Healing Journey) that is multi-part and educational – so interesting but I did feel I was on a medical school course. I stopped after part 1, not sure if I’ll go back.)  I’ve also taken the writing workshop, where it felt more like learning how to write, rather than focussing on our own writing. Money Matters has been a great program, still in progress. A counselor will help you analyse your financial situation and help you get the best support possible. I need to follow up on this. In the future I could consider some in-person visits and double up with a visit to my friend, Leslie, who is running the childbirth education program that I was once part of.

Talking of money, I was eligible for EI (Employment Insurance) Sickness benefits. Every two weeks for six months I would receive 60% of my median salary from the government and could earn up to $100 on my own. I kept three hours of work to keep my foot in the door and my mind sharp after a few weeks off. My company has no sick benefit or insurance so I could just keep my head above water. I haven’t returned to my 20-hour schedule yet. I feel just about ready but some of my projects are slow to take me back. It was always a risk. My pay has halved and there’s no extra help.

Look Good Feel Better: This is such a great group. I have taken four workshops with them, all virtual. The best was the makeup and skincare workshop. The host demonstrated skincare and make up techniques specifically for people in treatment and about a week later I received a good-sized kit of makeup and skincare samples of my own. I also took the headwear and wig session and gained confidence I could be happy with no hair. Advanced skincare was more serious and gave me a lot of information that I might not have thought of.

After Breast Cancer: This store has been so helpful. I met with Natasha at a lingerie store that includes ABC. I was fitted for a prosthetic and a bra all funded by a charity. In the end I walked away with the heavier-than-expected fake breast that fits inside my pocketed bra – no more lopsided profile – and two bras at no charge. Well, not exactly. I applied to the government for help and paid the difference. I also ordered a heavy compression bra from one of their suppliers and got help with the fitting. Fantastic charity.

After finishing radiation I was eligible for a program called ELLICSR: Health, Wellness & Cancer Survivorship Centre run by Princess Margaret Hospital and taking place at Toronto General Hospital. Here for eight weeks every Friday morning I had 90 minutes of education to help me rehabilitate and 30 mins of strengthening and cardio exercise especially designed for me.

I also have help for the arthritis in my knee and for Lymphoedema at Princess Margaret Rehabilitation and Survivorship program. All in progress.

Let’s not forget social media. I belong to three Facebook groups. They’re great for asking questions and feeling less alone. It’s also good to be able to answer questions from those who come later. I had an unexpected connection from TikTok! A lady in Texas was blogging about her breast cancer journey (@foolshmortal999). When she mentioned that she was starting Taxol on the same day that I was, I messaged her. I had already made a connection with someone from a Facebook group who shared that start date. The three of us have chatted back and forth and we’ve shared the milestones. We’re called the Taxol Triplets. From Theresa, I’ve learned about the financial challenges of those in the USA with cancer. I’m so grateful for universal healthcare.

Finally, every two to three weeks I have counselling sessions in the Geriatric (that took me a while to swallow) Psychiatric Program at Mount Sinai Hospital. I love my therapist, Sarah, and have the option of Zoom sessions when I can’t make it down in person.

Mount Sinai also gave me a grant after I’d asked them questions about help with getting some medical equipment while I wasn’t earning.

My Gilda’s support group has now become a WhatsApp chat group. We talk every day and have met three times. When I was still in treatment I’d have a chance to meet up with some of them if they were there at the same time. Friends for life, maybe. My ELLICSR group also has become a WhatsApp group, not as bonded but definitely in touch and hoping for an in-person coffee meeting before the summer. Meeting new friends with similar ties is a big plus for me.

I’ve hesitated to talk about the support from friends and family. I’ve been mostly alone.  While many like privacy and to be left alone, I’m the sort of person who needs a bit of pampering and fuss when sick or in pain. Thank you, Denise, for the cake! Is it bad I forget the second gift? Ouch. But I do remember chocolate-covered strawberries, yum.  A most touching gift came from an unexpected source. The people who lived upstairs when I was going through surgery and chemo sent a gift of flowers and an Uber gift certificate. Othewise, It’s been quiet. No casseroles, no cards, no gifts, and the usual barrage of ‘how are you feeling?’ from people on chat. Always hard to know how to answer that – honestly or not? What I’ve learned is that lots of people, probably mercifully, have no idea what cancer or its treatment or recovery are like. I try to gently educate but how much does anyone need to know when they’re removed from it?

There’s help out there if you want it!

Index of all my Breast Cancer Journey Posts

Oddly, yet perhaps predictably, hair is in the top five topics discussed by (female?) cancer patients. When will I lose it? When did you lose it? Will I lose it? Shall I shave? When will it grow back?

I was told I could use a ‘cold cap’ for chemo. It would preserve my hair, but it isn’t a surefire method, and it would be an out-of-pocket expense. I decided no. But I contemplated what it would be like to lose my hair. There are two things I’m known for – my breasts and my hair. Both were now about to change. How did I feel about this? Surprisingly, less scared than I thought I’d be.

I asked the head nurse, shall I shave it? When? Everyone shaved their head – sometimes it was before chemo started, and sometimes it was after the first sign of it falling out. She said, why shave it, you don’t know when or how much or even if you will lose it. This sounded right.

My hair was looking ‘wrong’ anyway. It had become somewhat lifeless and lacked its usual ability to bounce back after washing. Was this the cancer, I later wondered? I had been considering a shorter cut anyway. Here I go!

When chemo started, I cut my hair shorter. I didn’t pay too much attention to the shape. Just wanted it to be easier, to get used to having less, have less to deal with if I did have to shave. I bought numerous little beanies and headwraps. It was fun. I enjoyed how they looked – bad hair day, what? I had my favourites… I stowed away my hairbrush and most of my hair products, keeping just shampoo and conditioner. I was prepared.

After the third chemo session I saw hair falling a bit. It didn’t come out in handfuls, but I found strands on the couch, on my clothes. Over the next little while I could run my fingers through my hair and several stands would be in my hand. One more chemo session and now it was obvious it was going. I would wash my hair and see a lot in the tub, on my hands. No going back now. I cut it to about an inch all over this time. And waited. It hung in there but thinned until it reminded me of the Phantom of the Opera – wispy and thin hair that made me feel like a sick person. This wasn’t fun and I wore my head coverings even when I was home. One day I forgot and went to answer the door. It was a canvasser and they hurried away. Oooops.

It didn’t really feel traumatic. I thought it would. It did, however, feel sad. And it reminded me I wasn’t well, that my body was rebelling. I loved the bright head scarves and upped the lipstick ratio. With all the money spent on the caps, scarves, and turbans, a £2 scarf from Primark and a giveaway buff from my friend’s cancer ward were my favourites. I could have saved a lot of money.

Everyone around me was shaving their head, documenting it, but I never did. When I did do the very short haircut, it wasn’t for looks. First of all, it meant much less hair on the couch, my pillow, the floor, the carpet… But also losing hair felt weird. I wasn’t expecting that. My hair hurt. It prickled and felt like dozens of pins were being stuck in my scalp. Once short, that sensation dulled to the point I could ignore it.

I didn’t lose my eyebrows (although they got a bit sparser), eyelashes, or any other body hair to any significant point. Others said I was lucky.

And, yes, it comes back. Not long after chemo ended, there it was again, growing to remind me that my body knew how to flourish. Nine months later – today is 31 December – it’s about three inches long. I don’t like it yet,  but it’s there. It’s just not me…yet.  Not my usual subject for blogging, I’m a ‘curly girl. Like most curly girls, I’m hair-obsessed. The whole story would bore you, but I know my curly girls would nod knowingly.  I’m considering getting a haircut so I do like it but the thought of losing what has taken this long to grow is painful.

Hair!

A note about nails – I heard horror stories of nails falling out. Mine didn’t but they are a mess. They break, tear, they rip. It doesn’t take much and I have to be very careful and clip them short to preserve them. Yet they grow quickly now,

When does your hair grow back? Well, I will need to add photos but right now, January 2026, I can just pull my hair into a tiny ponytail. It’s grown back as curly as before and seems thicker and healthier. I can’t control it – could I ever? I don’t like it yet.

In other bright notes, I started to make dolls again. it happened because a cancer-buddy inspired me. We were talking about my dolls and I got the idea to make a doll to commemorate our mutual journey. At first I was going to make her bald but I couldn’t do it in the end. I sent it to her for Christmas and it arrived Christmas Eve. Her grandchild named it Grammie. I learned that creating the dolls really focussed my m ind and was a wonderful distraction – from cancer, from the world. Yay dolls!

Index of all my Breast Cancer Journey Posts

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.

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?

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.

Index of all my Breast Cancer Journey Posts

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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