It’s been a minute, and getting back here to update you is well overdue. It’s now one year after I started chemo, so here’s a rundown on how I’ve been doing.
Part One: Chemo
I started chemo on 25th July 2024, doing the dose-dense AC-T regime. So the first four treatments were fortnightly doxorubicin (“lovingly” called the red devil) & cyclophosphamide infusions.
I had had a port put in by my surgeon just a few days before.
Overall, I coped really well with these. I had my infusions on Thursdays and during the treatment I felt fine.
I had my husband drive me to the first one, but after that, I drove myself the 20 minutes each way to the hospital.
About day three after the treatment hit – so Saturday – I just felt unimaginably fatigued.
There was one morning I got up had a quick shower, got dressed, made some instant oats and tea for breakfast – and had to go lay down and rest again because I didn’t have the energy to eat my breakfast!
This lasted two or three days, and then I had a bit over a week where I felt good before doing it all over again.
If you know anything about chemo, you know this is the strongest one out there, and there’s 100% chance of hair loss. I’ve never heard of anyone who didn’t lose their hair (unless cold-capping).
I briefly discussed cold-capping, and I did have the option, but I decided I couldn’t be bothered.
On day 13 I had my hair cut into a short bob. I was really hoping it would make it to day 17 because I had the 21st of a good friend’s twin daughters, and I didn’t want that to be my first outing without hair.
It would have made too much attention on me and taken it away from them.
I did get there, but when I woke up on the Sunday, my hair just felt dead. It just kinda hung weirdly on my head. I organised to go to my hairdresser (and good friend) the next day to get it shaved.
We took it right down as short as it could go with clippers, and I was surprised at how much I actually liked it. I wasn’t missing my long blonde hair at all. More than one person mentioned it gave off Sinead O’Connor vibes!
Slowly over the next few days, it started becoming patchy. and on the Saturday I jumped in the shower with plenty of hair, gave my head a good rub, and had only a few short strands when I got our 🙂
Finally, then two weeks later, day 33, my hairdresser shaved my head down to nothing, using a man’s electric shaver to avoid any nicks.
Even though I had bought myself some cheap fun wigs to try out, I ended up walking around completely bald for the next few months – I couldn’t stand having anything on my head.
Between the last two AC treatments my bloods came back a little dodgy – my haemoglobin was low which meant I ended up with a blood transfusion to help perk me up a little.
This happened twice more before I finished chemo – but I’m skipping ahead there!
After the AC, it was on to 12 weekly infusions of paclitaxel. This is meant to be easier to deal with after AC, but I was to prove this is not always the case.
The first sign things were not as they should be was when I started becoming breathless with a fast heartrate, even right after a blood transfusion that should have helped.
There were some tests and an ECG, and then a whole pile of drama. My troponin levels were VERY high. This normally means a heart attack.
So chemo was cancelled and I was off to see a cardiologist – who found nothing wrong and said I was fine to do chemo.
My troponin stayed high, I was having multiple blood tests each week to monitor it, but no-one seemed to know why.
Then the temperatures started.
With chemo, as soon as temperature goes over 38 degrees it’s an automatic hospital visit.
Over a couple of weeks I had probably four or five admissions to emergency, an overnight stay with multiple scans there (including Xrays and MRIs, so many blood and urine tests), and overnight at my private hospital for monitoring too.
My blood pressure kept falling through the floor – at one point they called a code and my room filled with medical staff, while I sat there looking at them saying I was fine.
I was taking course after course of antibiotics. Each time I ended up in hospital they would immediately start me on IV antibiotics, even before they got test results back, just in case.
One day I had excruciating back pain, another day it was stomach cramps, another I vomited, the only time during the whole experience.
And there was no reason for any of it.
I was at the biggest, newest and best hospital in our state, and the Head of Oncology was baffled and told me not to bother coming back, there was no reason for all these issues – go see my own oncologist instead!
(How to do that at 2am I don’t know, but anyway…)
I actually think he thought I was after the painkillers they were giving me. I had never had such strong painkillers in my life, and haven’t since. I barely take a paracetamol!
That was the final straw. I spoke with my oncologist and my chemo was cancelled for good. I did 8/12 treatments.
Part Two: Recovery
This was when I felt the worst during the whole process. I was just sick. No matter what I did my temperature spiked each evening. I had no energy and random pain.
One suggestion was that my port was infected. So a quick call to my surgeon on Friday and he squeezed me in to have it removed Saturday.
That was a quick 10-minute procedure with a general anaesthetic.
It took another few days and even more antibiotics before I started to feel better.
It wasn’t my port though, that was fine.
Those last few weeks had really wiped me out, and I had so little energy. For the first time I felt like I was undergoing chemo – and I had finished 😂
A couple of weeks after finishing I saw my oncologist, who said he had never seen a reaction to chemo like that.
All the tests said I was fine, but clearly I wasn’t. My body just decided it had had enough of having these chemicals pumped into it.
My bloods were still a little wonky, even the troponin, but they were improving, so I just wanted some recovery time.
And in my mind, there was only one thing to do – go on holiday 😂
So I went on a 10-day South Pacific cruise over Christmas where I spent most of the time just chilling out in our room and enjoying not cooking or cleaning or having anything else to do.
Part 3: Radiation
With the New Year came the next part of my treatment, radiation.
I had had my planning session and tattoo done before we went on our cruise, so when we came back I hit the ground running.
Radiation was a little worrying for me. Normally, implants will not be put in until afterwards because it is common for them to be damaged.
But my implants have been in since 2020, so we were just going ahead and hoping for the best.
I had 15 sessions of radiation, and it was a breeze. I ended up just slightly pink. I wouldn’t even call it red as sunburn, something I am very familiar with, thanks to my pale skin.
Surprisingly, I didn’t have any fatigue. After the dramas at the end of chemo, I thought this would knock me out again, but I was fine.
I slathered myself liberally with Sorbolene (supplied free by the hospital) and Moo Goo (given to me by my cousin) a few times each day.
And at the end, there has been no noticeable damage to my skin, and my implant seems fine too.
I’ll have a check-up with my surgeon in September, and hopefully he will say the same thing.
Part 4: Ongoing from here
Sadly it’s not all done, I will still be dealing with ongoing treatment for probably seven years.
The first part is taking the hormone blocker Anastrozole.
Last time I was taking Tamoxifen, but chemo has put me into menopause so I’m now taking an aromatose inhibitor, which works differently.
Basically, it stops my body producing any oestrogen at all.
I’m almost six months in with this as I’m writing, and I can truely say this has been my least favourite of everything I’ve had to deal with so far.
It’s kinda hard to describe, but I now feel old. I physically look older, and I no longer feel full of energy.
I can’t think of a single day where I’ve woken up full of energy, ready to go. Now it’s more dragging myself out of bed and through the day.
As happens in normal menopause (but gradually), almost overnight I began to have lots of pain in my hands and knees.
Often this is thought to be arthritis, but it’s actually tendon issues, now that they have no oestrogen.
My knees are the worst. Sometimes when I’m sitting down I can’t get up without pulling myself up.
Usually, it’s only in the mornings, and I’ve found the best way to deal with it is to be active. Sitting still just makes it worse.
One of the other major side effects from Anastrozole is a decrease in bone density.
To combat that, I was offered zolendronic acid infusions, Zometa. I will have one of these every six months for the next three years.
I had my first one a couple of months ago, and it was weird being back in the chemo suite.
These, particularly the first one, are meant to create flu-like symptoms for a few days afterwards, and that proved true for me.
My hair came back really evenly, and instead of straight, I have tight chemo curls, but I’m hoping as it gets longer they will drop out.
It also seems darker than it was, but I fixed that with a little colour 🙂
Now, it’s just onwards and upwards, getting on with life.
Memorable Moments
There have been a few things that have happened throughout the year that are worth mentioning.
About half-way through my Taxol, the chemotherapy department I was going to was closed down.
I was moved to another hospital with new staff who didn’t know me, right as all the dramas started with my temperature etc.
Sadly that hospital was a bit chaotic, and even my Zometa infusion there was not an amazing experience.
The chemo department at my original hospital is meant to be reopening soon, so hopefully I will be back there again for my next Zometa.
Because I was there when the staff were told they were being shut down, I ended up on the local news, interviewed about dealing with the interruption of my treatment.
I had never been on TV before, now I was on there bald as a baby’s bum.
In for a penny, in for a pound, and when I was contacted by a national morning show to talk about being a silver backpacker, I went on there too.
