My life plans were severely shaken in March 2023 after receiving confirmation I had Stage 3, Grade 3 breast cancer. A large tumour had burgeoned to around 5cm in just 6 months and attached itself to the chest wall …
In this article, I’m aiming to share a few thoughts and experiences as I adjusted to the cancer diagnosis and navigated months of life-saving treatment. Hopefully some of my story is relatable to those who might be on a similar journey, providing a sense of comfort and understanding. For those wanting to support someone they known through such a challenging time, I hope it also offers up some helpful insights.
Pre-diagnosis suspicions (and tumour!) growing:
In the winter of 2022, about 4 months prior to diagnosis I began to periodically experience a new, slightly uncomfortable prickling sensation across the left side of my chest, travelling up towards the armpit. Self-examinations revealed nothing untoward and embroiled in a busy lifestyle, I was happy to dismiss these as part and parcel of other perimenopause symptoms. By January and February 2023 however, the sensations were becoming more frequent and noticeable. Adding to my creeping unease one day I also thought I noticed a small but visible indentation in the left breast. For some reason, I questioned myself, had it always been there or was this something new? I couldn’t quite decide so once again cast the thought to one side after another self-check and finding no discernible lumps. Then at the start of March, during yet another self-examination I suddenly chanced upon it, tucked right underneath the left breast and deep inside – a very hard and alarmingly large lump that felt as unyielding as a steel plate…
Diagnosis Day...
An agonising week and a half passed before I managed to secure a referral to the breast clinic, during which time I kept the entire thing to myself and convinced myself of the very worst-case scenario.
On the day of the appointment, despite my almost certain belief that it was cancer, as I am naturally quite a positive person, I still made my way to the clinic, clinging to a flicker of hope that perhaps it might turn out to be a benign cyst after all. Of course, this thinking was soon to be dashed! A battery of tests and a sombre-faced doctor’s consultation solidified the grim reality. “It’s probably cancer”, she stated matter-of-factly. In that moment an unusual calmness enveloped me. I could tell the two doctors present were shocked by my lack of emotion as I politely replied that I am a realist, the news was expected, and enquired about the next steps and my life expectancy! Inwardly of course I was reeling. It felt like a vital lifeline had been severed and I was now hanging on to the normal, everyday world by a thread. It was as though I was observing the scene from outside the building, peering into the room where three people were sitting, discussing the cancer diagnosis. This sensation of detachment persisted in the following days as I awaited the formal lab results and official confirmations.
Pre-treatment anxiety
During the tormenting interlude of waiting for results and formulation of a treatment plan, I confided only to my wonderful and long-suffering other half (!), Jeremy, whilst choosing to maintain a façade of normalcy for everyone else including even closest friends and family.
Psychologically this pre-treatment plan waiting phase was the hardest time to get through. I was in a realm of great uncertainty and struggling to come to terms that I really had a life-threatening condition. Even though the sensations in my chest were growing far more pronounced, in every other respect I felt completely well.
Very soon, additional, invasive tests became a necessary ordeal, to discover the extent of the disease and crucially to find out whether it remained localised or in the ultimate worse scenario - had ventured into my bloodstream. Waiting for and receiving that particular result was acutely stressful and it is difficult to describe the surge of relief when told it had not spread any further.
This relief was tempered with the knowledge that the tumour was already a significant size and affixed to the chest wall and I continued to grapple with unwelcome thoughts that each passing moment of this waiting period during the planning phase, might lead to Stage 3 becoming Stage 4. The burden of keeping all this inner turmoil to myself, whilst going about my everyday routine and even planning work objectives for the year ahead, weighed heavily and I experienced many sleepless nights trawling the internet with feelings of dread, anxiety, and isolation.
A change of mindset - reclaiming control
After several weeks of high anxiety and turmoil, there came a turning point when I started to feel quite a bit more positive and more like myself again. Several developments brightened the horizon:
First, a comprehensive treatment plan materialised. It entailed six rounds of chemotherapy, to shrink the tumour to a manageable size before surgery. Post-tumour removal, radiotherapy, and hormone therapy would then be used to help prevent recurrence. This newfound clarity not only provided a clear roadmap but also instilled a sense of purpose, as I knew the exact date and reasons for each step. Understanding the treatment goals helped nurture my first feelings of hope and optimism about the future.
Secondly and I think this was the clincher for my emotional wellbeing - despite initial instincts to clamp down - I made a decision to share the news with my immediate family plus my wonderful line manager, who deserves special mention - Nayan Kothary.
Time passed and bit by bit I decided to trust more people and gradually expand my circle of confidants. It surprised me to feel a weight lifting from my shoulders with every disclosure. I started to grow increasingly comfortable in opening up about my condition with more friends, colleagues, and eventually even with total strangers!
As I began to engage more openly about my circumstances, I was unprepared and overwhelmed by the outpouring of kindness and solidarity from people – the many kind gestures, thoughtful words, and gifts (all manner of things - from statues with healing powers to bottles of champagne, flowers and even a lemon tree!) - a testament and realisation of the incredible support network I had in my corner. It was a poignant reminder that people genuinely care when allowed to do so! These acts of kindness not only lifted my spirits but played a huge part in mitigating the sense of isolation that had initially weighed me down. I felt less burdened and had a renewed connection to both people and life itself. I was feeling happy and positive again!
Chemotherapy – embracing life amidst treatment
Once the rounds of chemotherapy began, I found it helpful to keep busy and distracted. For me it was beneficial to continue work during this time whilst also embracing new experiences and lifestyle changes. Following advice from a great friend, I borrowed a delightful Romanian rescue dog named Olive, though the website, borrowmydoggy.com. Getting to know this tiny dog with a huge personality was a welcome diversion, improved my mood and boosted activity levels.
Additionally, I took proactive steps to prepare for the physical challenges that chemotherapy might bring, including getting fitted for a wig and starting a fitness regime at the local gym. I found the exercise not only helped calm my mind, it also strengthened my body to better endure the rigors of chemo and to recover faster after each cycle.
I also reached out to Macmillan for advice and they kindly put me in touch with a ‘cancer buddy’ called Claire. A cancer survivor herself, Claire offered consistent support - calling me every single week to chat about treatments, and progress, and generously share her own experiences. This unique understanding of my circumstances and her camaraderie were just an incredible support.
Taken together, I am convinced all of these elements contributed to limiting the side effects of the chemotherapy. It wasn’t a breeze by any means, there were ups and downs, but it also wasn’t as bad as I had expected and I eventually got through it. In fact, as the chemotherapy cycles drew to a close, I even felt well enough to host a French exchange student for a few weeks which was lots of fun!
The Operation – a milestone reached
As August arrived, I found myself at a unique crossroads. Months of chemotherapy were now behind me, and I knew there was just a short interlude before the operation would take place. To my incredulity, it was confirmed the tumour had vanished into thin air. I was totally elated for a short while.. until informed this did not mean any de-escalation in the remaining components of the treatment plan, which still included an operation, radiotherapy, and years of hormone therapy!
I did manage to slip in a much-anticipated holiday in France at this point despite a few reservations as to whether energy levels would hold up. It was one of the best holidays I’ve ever had although I did succumb to one very public fainting incident in a very busy tourist square. Aside from that, fabulous. No regrets!
On arriving back to the UK, I immediately underwent a series of challenging pre-operative appointments. These stick in my mind for the wrong reasons but I will spare readers unpleasant details!
The day of the operation arrived and it was a mix of excitement, fear and eagerness to get it done. The staff at the hospital were amazing. Outstanding, highly skilled professionals, every one of them. I felt especially reassured on meeting the anaesthetist whose expertise seemed immediately apparent. He assured me that, at first, I would just feel like I'd had a glass of prosecco on a summer’s day, before pleasantly drifting off. I was happy with the picture he painted and it happened exactly as he described. Very relaxing! The lumpectomy, removal of one lymph node, and small flap reconstruction procedure took just over 3 hours. To me of course it felt like minutes before I was waking up again in the recovery room. After being offered tea and toast back on the ward, I was back home before I knew it. What a day!
Radiotherapy: the final stretch!
Recovering from the operation I was again feeling pretty elated, that is until the oncologist explained I would need a far more extensive programme of radiotherapy than originally envisaged. This was because some microcancer cells had been detected in the lymph node that had been removed. The programme would therefore involve not just turbo blasting the tumour bed, but also targeting an area under the armpit plus every single lymph node. In total I would undergo 15 treatments spread across 3 weeks.
Radiotherapy introduced new challenges, both physical and mental. At each appointment, the radiographers would carefully position me lying on my back, semi-naked and immobilised with both arms fixed above my head in arm rests. I would then be left alone in the semi-darkness with my thoughts and a soundtrack of rock music to focus on. A couple of rather apt songs I recall: “Paint it Black” and "Highway to the Danger Zone"!
Once each treatment began I was required to lie perfectly still and hold my breath whenever instructed by a disembodied voice, to synchronise with the machine’s movements as it whirred around me, delivering bursts of radiation to different areas of the chest. I found the lengthy breath-holding stressful and difficult. There was no way around it because of the tumour's unfortunate proximity to my heart and lungs. Holding the breath is supposed to temporarily create a safe gap between these organs and the radiation beams, reducing the risk of unwanted exposure.
The mental challenges of radiotherapy day after day were, at times, overwhelming. The sensation of vulnerability while lying cold and exposed on that table, the mechanical sounds, the breath holding and the need for unerring stillness all took a toll and I was having bad dreams and restless nights. I just held on to the thought that each day I was getting closer to the finish line.
Life in remission
As I write these lines in early 2024, I am in a state of remission. The question of whether I am completely free of cancer remains unanswered. This uncertainty is a reality every cancer survivor learns to navigate. I have learned that the chances of recurrence are highest in the first two years so vigilance is very important. My routine now includes a regimented course of preventative medications: a decade-long commitment to one type of tablet, a two-year regimen of another, biannual infusions for bone health, bi-annual mammograms, monthly blood tests, and check-ups to monitor my response to the medications.
Despite these challenges, I feel unbelievably well. My experiences have inspired a bit of a lifestyle transformation— a healthier diet, reduced alcohol consumption (!), and a newfound appreciation for physical exercise. I always wanted a dog growing up but it wasn’t possible with both parents working. So I decided it was finally the right time! On 9th January I got my puppy, Ziggy Stardust (yes I am a Bowie fan!), who promises not just companionship but also a lively impetus for daily activity.
Overall I feel revitalised and so very grateful. My experience with cancer has deeply instilled in me an appreciation for life's fragility as well as it’s splendours. Each day brims with a renewed zest, a desire to savour every moment to its fullest, and it’s an exhilarating feeling.
I extend my heartfelt thanks to everyone who has supported me on this journey. If anyone is traversing a similar path and feels the need for a conversation or support, please do not hesitate to reach out. Sharing our stories and experiences can be a source of strength and comfort as we walk this road together.
Emma Jackson
AbilityRE ExCo Member and Content Lead.