06 April 2022
A year ago today, I went and had my first mammogram.
I didn’t realise it at the time, but that was the start of my cancer experience.
I have shared much of my experience over the last year on my Facebook page, but I keep that locked down to friends only – so please don’t attempt to connect there as “decline friend” often offends; it isn’t anything personal, it’s just the way I choose to run my socials.
However, several friends have asked me to make more of what I wrote and what I shared more readily available – so this is the start of that.
Anniversaries are important, especially with such a significant experience. Living through a cancer diagnosis, surgery, chemotherapy, and convalescence involves absolute bucketloads of trauma, fear, and anxiety, and that doesn’t magically disappear when you start to get better. I have decided to work through my anniversaries here both to assist my healing as well as with the hope that perhaps someone else can draw some comfort or wisdom from my experience.
This series of blog posts is not going to be for everyone – if this is not something that you as a reader are interested in, then I invite you to consider that you are not the intended audience, and as such, I also invite you to turn away from my blog or at least from the posts that focus on this experience.
Today, I’m going to talk about the mammogram. It was the first one I had.
In Australia, “A screening mammogram is recommended for all women aged 50 to 74, provided they have been informed about the risks (see below) as well as the benefits of screening. Mammography screening is freely available to women aged 50 to 74, every two years, under the BreastScreen Australia program. Women aged 40-49 and those aged over 74 can also be screened free of charge, but they will not receive invitation letters.”
Source Cancer Council (Australia)
I had turned 50 the previous July (2020) but in Melbourne, Australia, we were in lockdown due to the COVID-19 pandemic at the time, so it wasn’t on my list, so to speak at the time.
Melbourne lockdowns / restrictions.
I had been progressively unwell since September 2020. I have pre-existing conditions that are normally well managed but I was struggling to manage them. I was also perimenopausal since January 2019.
So I had started the investigative process. I had bloods done in January 2021 – nothing sinister found there. I had gone back to intermittent fasting, as I have often found, whilst not a radical cure all, it did make me feel better.
In Australia, “The National Bowel Cancer Screening Program aims to reduce deaths from bowel cancer by detecting the early signs of the disease. Eligible Australians from 50 to 74 years of age are sent a free, simple test that is done at home.”
Source Australian Government Department of Health
So yeah, *that* had arrived within days of my 50th birthday the year prior and I had turned my nose up at it, but with gentle prompts from my terrific GP, I had gotten my act together and done that as well.
So with that done, and again, prompting from my GP, I booked my mammogram, given that was another of those recommended checks.
My thoughts were simply that I knew something was wrong but I didn’t know what. My pre-existing conditions were spiralling out of control for the first time ever, the perimenopausal migraines were becoming really frequent and more debilitating, I was having problems with my neck in my Work From Home situation, my armpits had been tender since the January, I had no energy, and simple daily life tasks were becoming overwhelming.
So blood tests – check.
5 sessions of physio for my neck, as well as a consult with a occupational therapist to refine my home office set up, a fancy new office chair – check.
New glasses – check.
Home bowel cancer screening – check.
I had started back on the intermittent fasting in the October – check.
New medical regime for increased management of my allergies / respiratory issues and general pain management due to my fibromyalgia and hypermobility syndrome – check.
So it was time to face the mammogram. I had done a lot of reading about them, watched videos, etc. I’m neurodivergent, and I have a history of abuse, it’s important to wrap my head around situations where strangers are going to be touching me.
When I had been getting ultrasounds on my hips a few years prior due to problems with dislocations due the hypermobility syndrome, I had spoken to the ultrasound technician about my trepidation around mammograms.
Her recommendation was to go somewhere where they do it all the time.
Another friend recommended going to a place in a well to do suburb because, by her logic, more privileged people will not tolerate pain, discomfort, or poor service / bedside manner. I’d never considered healthcare via that kind of lens, so … more reading.
I considered both sets of advice, and found that the Breast Screen Victoria website makes it all very easy.
I fronted up for my appointment and it was all very efficient. All female staff, and they were gentle and professional. It is, nevertheless, very uncomfortable, overly intimate, and a complete stranger is handling your naked breasts.
They told me I would have the results in two weeks.
I had driven myself to the appointment, and on the way home, I found tears rolling down my cheeks. I could feel the phantoms of touch on my breasts and it did trigger some unpleasant body memories. Some of that was probably the fact it was a new experience and I was stressed about it as well. Being neurodivergent, and with that history of abuse, I sometimes find I need to give myself extra preparation time and extra processing time – it’s something I factor in now, and I have found it has served me very well over the last year.
I was working from home in an instructional design role, Monday – Friday, 9 – 5 kind of arrangement, and I was just very kind to myself the days prior and after the appointment.
I sat with that discomfort, acknowledged it, and used my therapy toolbox to unpack it. I wasn’t completely unprepared or surprised because I thought it was a possibility when I had read up on the process and watched videos about what mammograms entailed. I did, however, write to Breast Screen Victoria and share my experience, suggesting that perhaps that was something that could go on their website so that other people might be prepared / empowered if they had a history of abuse and / or assault.
In Australia, “2.2 million women (23%) and 718,000 men (8.0%) aged 18 years and over have experienced sexual violence in their lifetime, including childhood sexual abuse and/or sexual assault since the age of 15.”
Source Australian Bureau of Statistics
This is important to factor in when engaging with professionals in the the medical sector.
It’s taken me 50 years, and I literally had to write out a statement and practice it, but I have found it helps me place guidelines and boundaries when working with medical professionals.
My statement is “I am neurodivergent, and I do have a history of trauma and abuse, so I really need you to explain what you are doing when you are touching me.”
Sometimes I will add “I may need you to repeat things and I may need to write things down so that I can refer to them later”.
There are variations, of course, depending upon the situation. I found writing it out, and practising it helped, so that I didn’t freeze up or doubt myself.
It’s served me very well, and I have had a number of medical professionals actually thank me for being so clear with them.
So… a year ago today, I had my first mammogram, and this is where my cancer experience started.
If you are eligible, I really would recommend booking in for a mammogram – it looks like my first mammogram may well have saved my life.
Also – ensure that you are vigilant around your self-examination. Train yourself to check your breasts/testicles routinely, and monitor your bowel habits and your urine output. These are our body’s early warning signs, and we don’t have a lot of awareness of them.
Fabienne, sharing this is very brave. I’m sorry to hear that your breast screen was triggering. The statement you wrote is brilliant. On the one hand, I wish we didn’t have to advocate for ourselves so fiercely, but on the other hand, communication is so important, and most people are happy to accommodate us once they understand our needs.
I have come to think that perhaps, and this might be my optimism speaking, we currently are constructing new, more modern models of how to live through the experience of being sick or becoming chronically ill, of how we die.
Also, I think the doctor / patient relationship is changing significantly when contrasted to what I saw as the norm in my childhood and even into my 20s.
I think you’re absolutely correct – people will typically accommodate and integrate when they know and understand – because most people aren’t actually assholes, lol!
Bravery… I don’t know, I kind of feel like I stand on the shoulders of giants, you know? I’ve admired so many passionate advocates over the years- for the environment, for disability, for feminism, for human rights and so on. I have been in awe at their dedication and ability to communicate and to be centred in their power. This is my humble activism and tribute in a sense to those who have gone before and allowed me to live my life.
If I can share this, and it lightens the load for someone else or gives a framework for another person to lean into if facing similar – well, it will be worth it.
I will confess, standing in this space of transparency and vulnerability through my experience has been confronting, challenging, humbling, and provocative.