Standing In My Mother’s Shoes ……
It is almost one year to the day since I last wrote in this diary, heavily pregnant with my first child and so full of hope for the future. Over the years I have often started these entries saying I had no idea how to begin to express the things I had seen or felt, and that is sadly never more poignant than now.
Today, I sit in front of this screen exhausted, with tears running down my cheeks remembering the last few months and the sheer terror I have been through. I have rewritten this paragraph so many times, trying my best to find my flow so that I can do this right, because I want others to read these words, more than anything I have ever written before. I hope that just like the forums and endless blogs I found myself reading during my lowest points, that my story might make a difference to somebody somewhere and encourage them to follow their instincts, even when doctors tell them they are fine.
On September 2nd I took this video of myself triumphantly holding my eight month old son Finch just after I had signed off the last print run of the Second Edition of the Wonderland book. I felt like I had climbed a mountain, producing the book, designing the cover, working around the clock in the Italian factory, whilst driving back and forth every two hours to our tiny apartment so I could maintain breastfeeding. It had been chaos, but the worst was finally behind us as my little family headed home with shopping bags full of pasta and cheap celebratory wine. Our holiday in Lake Garda would start the next morning and for the first time since Finch was born I could imagine resting, feeling the sun on my face, slowing down and having some time to focus on happiness after what had been a difficult transition to motherhood.
That night whilst my husband Matthew read stories to Finch, I stood in the shower laughing to myself at the overflowing paddling pool we’d used as a make-shift baby bath. Plastic toys swirled around my feet as I lathered a handful of soap, rubbing it into my hair and skin, calling out to my boys that “I’d be there in a minute”; when suddenly my fingertips slid across the outline of a small hard lump I had never noticed before. Heavy slow breaths left my mouth as I froze, both hands on my wet breast, my terrified reflection staring back from the mirror with hollow eyes. A strange solemn acceptance prickled through my veins as I knew this could only mean one thing….cancer.
With each step I took towards the bed where my son and husband lay, the ground seemed to fall away, I whispered to Matt in the darkness that something was wrong…..something was really wrong.
That night as our son slept, we lay together on a fold out bed, drained from reading breast cancer forums on dimly lit laptops, eyes sore from stifled tears. I stared at the moon, numb, frightened and unable to process any of it. All I could see was my mother, she was everywhere, flash backs of hospitals, funerals, treatment rooms, the weight of it all took everything I had left. I couldn’t do this, not now….not with a baby…..not after everything we had been through.
The following day we drove to the lake. I drifted between the rooms of our outdated dark hilltop home, lingering in those furthest from anyone so they wouldn’t hear me crying. We’d hired a nanny so I could rest but instead I could barely let Finch go. I stood in the shadows of our bedroom, silently hysterical as I took picture after picture on my phone of him sleeping, tears streaming down my face. He looked so small, so fragile, I completely fell apart……
We left the strange damp house a day early for a new apartment with sunset views and a garden full of butterflies. My spirits lifted a little as I held on to Finch in the sunshine, pointing at the flowers and holding out our wrists in the breeze, willing the butterflies to land on our skin. I kept telling myself if one touched us, if it landed on Finch I wouldn’t have cancer and I’d be safe, it would all be a silly mistake. Each evening as the warm sun flooded our balcony with streams of gold and pink, I sat and watched Finch playing with his toys oblivious to the auras and flares that seemed to surround him. I desperately wished it was a sign, that it was mum telling me everything would be ok. I filmed short clips on my phone, narrating them with the date and Finch’s age, saying over and over how much I loved him, with the morbid thought that If I died he could at least hear my voice when he was older and never forget me. I clung to anything and everything for hope… if I turned the door handle twice, if I skipped the crack in the road, if the butterfly lands on us… if the light touches Finch’s feet before he crawls away …. I’ll be ok, I’ll be ok.
A week later the lake was a distant memory as we sat in the doctors waiting room. I was examined and immediately told there was nothing to worry about. The lump was very small, very mobile and of course I was breastfeeding ‘so this is common’ there was no need for concern. Only 3% of breast cancer cases are lactating women, but due to my mother’s history they agreed to a hospital referral which would take a couple of weeks. Having already waited one agonising week in Italy, any longer seemed unbearable and so within the hour we opted for private care. I was examined by a breast surgeon who once again said there was ‘nothing to worry about’. I had an ultrasound by a third specialist and was told the lump was undoubtedly benign. I lay on the examination bed looking up at the ceiling whispering “thank you” over and over under my breath. I was safe, silly me. Before we left the clinic we discussed future preventative care. Maybe I should have a mammogram next year when I stopped breastfeeding? Or if I was still concerned I could consider a biopsy for peace of mind, but it was so clearly not cancer the NHS probably wouldn’t fund it. Everyone sounded so confident, even Matthew tentatively suggested that maybe I should just rest now and let it go. But a voice inside said no, I had been here before with mum. Her appointments had been a slippery slope from ‘ok’ to more tests and eventually the helplessness that comes with a cancer diagnosis. This wasn’t about me anymore, I had a baby, a family and too many bad memories, so I insisted on a biopsy.
Three days later we arrived at the hospital clinic. I tried not to stare at the other women, wondering if they, like me were about to find out their future or if they were already on that path. I went to the bathroom countless times, willing my anxious reflection to be more positive. I hardly recognised myself, hair combed back, collar bone showing a little more than normal, I hadn’t slept. I put on my glasses and there she was – my mother looking back at me, I forgot to breathe. Everyone always said we looked so alike but now it was frightening me.
A kind nurse led me to a small dark examination room and explained the procedure to extract cells from the lump. I removed my top and lay on the bed. Cold jelly dripped down my side as I closed my eyes and talked to mum in my head. I had a second ultrasound followed by the needle aspiration and once again the doctor cheerily said everything looked completely fine.
I remember leaving the hospital that day, walking down the corridors feeling so grateful I was one of the lucky ones – scolding myself for constantly thinking the worst. Four doctors, two ultrasounds, calm down you are not your mother, YOU ARE OK.
The following week passed so quickly I almost forgot when the results were due. We had been out looking at houses and I’d left my phone switched off in the nappy bag for hours. It was around 5pm when I remembered and switched it on…. Six missed calls. I stood at the back door window, hands pressed against the glass as I braced myself for the voicemail trying not to panic. Outside the world continued drifting along in a hazy Indian Summer, Matt was mowing the grass whilst birds flew overhead and our washing billowed in the breeze. Finch babbled away, tugging at my trouser leg from his walker as I played back the words ‘suspicious cells’ over and over in silent terror. The relief I had felt over the past few days began to drain from my legs, they wanted me to go back the next day, 9am for more tests, it was urgent.
And so it began, the tests, the scans, the decline I had remembered so clearly with mum. The next morning I struggled to put one foot in front of the other as I walked back down the same corridors I had previously left feeling so light and happy. I couldn’t hold it together and sat in the toilets so I didn’t cry in front of Finch. My breastfeeding was making everything very difficult as the tissue of a lactating breast is so dense it makes scans unreliable. I had a third ultrasound, mammogram and this time a core biopsy. I lay on the same bed a very different woman as they guided a larger needle into the lump. Tears ran down my neck as I finally began to understand what my mother had gone through. You think you can empathise with someone who has cancer and try your very best to be there for them, but the truth is nothing can ever compare to the feeling when it is happening to you. I now realise how much she must have hidden from me, just as I was now trying to do for Finch. Matt and I have always said we should try and take photos of the good and bad so we never forget certain times in our lives. This photo was taken by him as I carried Finch up and down the hospital corridor for almost 2 hours between tests, burying my face into his soft hair and breathing in the smell of his sweet skin. Passing nurses stopped and tried to help but I wouldn’t let go, I just clung to him and willed everyone else to leave us alone. I was angry, sad, scared, so scared, I hardly spoke..
After four agonising days of waiting Matt and I sat together at home holding hands as my surgeon confirmed over the phone that I had cancer. They wouldn’t be able to tell me any further information until I had an MRI scan and then my stage could be determined and a treatment plan built. I began to tell a couple of close friends, my father, my mothers sisters, all hope seemed to unravel, it was finally real.
The following days and hours blurred until the morning of the MRI. We left just after the dawn, freezing fog hung in the air as we drove past commuters shuffling to train stations under grey swollen skies. In the car I held on to the seatbelt and tried my best to breathe, but a panic attack took over and we had to stop. This was the first day of true terror for me, an overwhelming helplessness took over as I passed through preliminary care, blood tests, changing cubicles and finally entered the MRI room shivering in a thin cotton gown. The darkened space was larger than I had imagined, soft pink lights glowed around the mouth of the huge machine, it was all oddly beautiful and calming. I lay face down on the bed, arms above my head as my poor bruised chest was placed in position. Everyone was so kind, gentle warm hands on my punctured skin, hushed voices, the nurse covered my body with a thick soft blanket and squeezed my hand when I blurted out I had a baby, “he’s nine months old, his name is Finch”.
The bed began to enter the tunnel as the thundering sound of the machinery began to pulse and whir through my ear plugs. I had made the mistake of choosing an audiobook to listen to while I was inside and was suddenly deafened by the boom of distorted echoing voices, as cold blue dye ran into my veins. A sense of detachment took over and the familiar feeling of falling returned, there was nothing I could do but close my eyes and try to block everything out.
Five hours later I sat outside yet another consultation room with Matthew. This was the moment we had been focused on for weeks, my final diagnosis before surgery. My appointment was running late and I could no longer hide how I felt, in truth by now I was utterly hysterical. Deep in my pocket I clung on to the ID bracelet Finch had worn in hospital when he was born, the photo of his 20 week scan when I was pregnant and a letter my mother had written to me in the last year of her life. My other hand dug into Matt’s palm, I drank cup after cup of water, I looked like absolute hell, we were called in.
Looking back as I write these words, I still find it quite surreal how my threshold for good or bad news readjusted with each new stage of a diagnosis. I had cancer, yet when my surgeon told us the news I was confirmed as stage one I almost cheered. The MRI had been clear, no other tumours were found and my cancer was a normal grade 2. This meant that unless surgery uncovered any further issues I would escape chemotherapy and my survival rate was 99%. I sobbed, rang my father, my friends, clung to Matt and kissed Finch’s birth bracelet. Everything melted away, I felt I could do this … surgery, radiotherapy, 8 years of a hormone drug, I would see my son grow up.
It was agreed that surgery to remove the tumour and my sentinel lymph node would be in two weeks time. I would have to wean Finch and mentally prepare myself for changes to my breast and the high possibility of infection as my milk made healing problematic. I blindly nodded and spent the days relieved, ecstatic and full of hope.
Throughout all of this time, from the very first moments in Italy I had constantly searched for signs, glimmers in our everyday that I tuned into and gave me some kind of guidance. Matt would always roll his eyes at me with my superstitions, but even he crumbled when he saw Finch’s bracelet in my hands. So many things happened, I had moments that couldn’t be explained that I wont list here but I never felt alone. The morning of the surgery the reality that my body might never be the same again finally began to sink in. I had been warned that the blue radioactive dye they inject into the tissue could potentially stain my nipple blue for some time, I could even cry blue tears. I wondered how much healthy flesh they’d have to remove, would I be left disfigured like my mother had been?
Hours later I lay on the operating bed as the anaesthetist administered the general anaesthetic. He asked what I did for a living, so I told him about Wonderland, the photos, the journey since losing mum. I cried nervous tears as the smell of vanilla filled my mask and the room blurred. This was only the second operation I’d ever had, the first was Finch’s emergency caesarean last Christmas Eve and now cancer… two scars I’d carry forever, life and death.
I woke in the recovery room to see Matthew tightly holding my hand between both of his. He looked frightened, was close to me, staring into my eyes saying my name over and over telling me to “wake up, wake up, it’s very important”. I began to reply when I felt another hand on my other shoulder and a nurse turned my head, asking me what was wrong and “who was I talking to?” I looked back and Matthew was gone. The recovery room radio suddenly switched and started to play the song ‘Fields of Gold’, the music my family had chosen for my mother’s funeral. I had been hallucinating but the song was real, I couldn’t believe what I was hearing. The nurses asked if I wanted it switched off but I refused, It was oddly comforting, like she was there with me.
I returned to the ward and passed in and out of broken sleep for the next few hours. My surgeon visited to say everything went well and they’d taken three lymph nodes to make sure they had all the information they would need. I went home and recovered extremely well, the scar was tiny and hidden just under my arm. I physically looked no different and to my amazement I was even able to to continue nursing Finch as normal, I felt invincible.
Two weeks later I headed back to the hospital for my final results. I felt strong, I even wore make-up on and held my head up high walking through the hospital’s sliding doors. I sat on the examination bed waiting for the surgeon to arrive, my reflection in the mirror flushed with colour, I felt so much better. However, the moment the doctors entered an unease crept through me. My surgeon hesitated a little and started by saying that upon analysis my cancer was found to in fact be a grade 3 – the fastest growing and most aggressive type there is. It was luckily removed with good margins and to my horror had only been 1mm away from attaching to my chest wall. She continued talking about the positives, that the tumour had been tiny, only 8mm but somehow all of this felt like a buffer for the one thing I really needed to know; had cancer been found in my lymph nodes? There it was again, the hesitation.
It was explained that out of the three nodes taken, a microscopic shred of cancer cells known as micrometastasis had been found in one. If I had been sixty years old this was so tiny is was negligible, but due to my young age they had to consider every possible preventative measure, which meant I could now potentially face Chemotherapy. At this point I simply shut down, I had always tried my hardest throughout this whole process to hold myself together, to not get angry when the original predictions had been so wrong. I’d cried buckets between appointments but always put on a brave face for the scans, the injections, the prodding and poking but now it all just fell away. I couldn’t look anyone in the eye and just slumped, staring into space with silent tears streaming down my neck as Matt squeezed my hand and tried to ask the right questions. A support nurse was brought into the room as it was explained I would now face one more test known at the Oncotype DX test. My sample would be sent to the US to be analysed for 21 genes that would build a cancer recurrence rate out of one hundred. If I scored under eighteen I would not have chemotherapy, If I scored between eighteen and thirty chemotherapy would be considered /recommended if at the higher end of the scale. If I scored over thirty I had no choice. The test would take two weeks, suddenly the girl in the mirror looked worse than ever before. My body was now my enemy, it is truly impossible to describe how that feels……
The days that followed were without doubt the worst I had ever been through. I scoured the internet for as much information as I could, desperately trying to piece together everything I knew about my cancer to see if I could get any indication of what my test score might be. Finally three days before I was due to return to hospital, I found a research study that implied if you had a grade three cancer the result was almost always high and chemotherapy would be recommended. After that I was inconsolable, wandering around the house clutching photos of mum, Finch, staring out the windows with wild exhausted eyes, hating myself, my body, everything. Matt drove us to the woods to try and calm me down but instead I dragged my feet, held on to the tree trunks and sobbed with true and genuine fear. I remember how beautiful the sun had been as we pushed Finch’s buggy into a clearing. Tiny leaves were spiralling down in the breeze from the tallest branches, dancing and drifting in the shards of light. It was briefly hypnotising and the dormant artist deep inside of me woke and reached with outstretched fingertips towards them. I thought of the Wonderland shoots and how badly I wanted, needed, to create again, but then the reality of my situation extinguished that hope with one crushing blow. The goal posts had been moved yet again, when would I ever, ever, be able to feel like myself and make new work? I was numb, broken, weightless yet heavy and the sensation of falling was with me at every step. I wanted to give up so badly, to not change another nappy, make another dinner, stop being a mother, a wife, to be left alone and just lay down there on the forest floor and be the old me. I was a wreck and was scaring myself and Matt, I had reached rock bottom and no longer cared who saw it, it was truly one of the worst days of my life.
Finally on November 1st, Matt and I returned to the hospital for my results. We were let into the consultation room before the oncologist arrived and sat silent and fearful holding hands. Both of us had given up, I cried for the millionth time burying my face into his jacket, exhausted and utterly hopeless, I have never, ever been so frightened. The door opened, and three doctors entered. The oncologist pulled up a chair in front of us, sat down with a handful of notes and to my complete disbelief told me I had scored nineteen out of one hundred and he would not be recommending chemotherapy. I can’t even begin to explain how it felt to hear those words. It was two months to the day since I had discovered the lump, two months of waiting to know my future. I never imagined that after everything I’d read I would spared. I was a completely erratic mess of joy and relief whilst still trying to remember my questions about what would happen next. Of course I still had radiotherapy and hormone treatment to face, but the doctor confirmed I was now cancer free.
And so, this is where I now stand. Until today only those closest to me knew. Sometimes I can’t believe the timing of the events in my life. With the First Edition of the Wonderland book I discovered I was pregnant and gave birth within a day of the books being delivered, and then on the night of finishing the Second Edition I discovered I had cancer. The girl who dedicated seven years to a book after her mother’s cancer, ends it with cancer herself, you couldn’t make it up if you tried. But as a dear friend said to me on the phone, when you go through these challenges despite all the terrible things, each time you gain a new level of empathy which you may otherwise have never felt. This resonates so deeply now and I feel lucky I have escaped so much. I constantly think about the women all over the world who will face far worse. Breast cancer is largely a mother’s disease, every forum I read during those late nights of desperation were brave women going through hell whilst trying to hold their families together, care for their children, babies and act normal when they were terrified inside. I feel like I have experienced something so profoundly life changing it is hard to put into words and of course it will now heavily affect my new work going forwards. I feel re-set and it may sound like a cliché, but I want to try harder, love more and be a better person. I’m feeling positive and will start my radiotherapy on the 15th of December for 4 weeks.
This has of course been a very emotional entry to write, and something I wasn’t sure I would make public at first. However, if it wasn’t for the women who had written about their own experiences, especially those who were breastfeeding I may have never insisted on that biopsy. My cancer was grade three, which meant in six months or a year’s time my diagnosis would have been very different. Their words and my mothers experience were why I pushed for more tests, which has in turn now saved my life. I just hope that maybe this diary entry might also one day help someone make the same choice. x
Finally whilst all of this was happening, I lived in the complete paradox of the Second Edition of the book coming to fruition and looking even more beautiful that I could have ever imagined. In my lowest moments, unknown to you all, your photos and messages of absolute joy and excitement over receiving your books kept me going. Seeing people clutching their pre-orders like precious treasure, reading the emails about you pouring over the pages with your families was a medicine like no other. I am so proud of the book, it always seems to save me in my darkest times and to know it is so loved by you all means the world to me.
I wanted to share a few of those pictures here, to remind myself how far this book has travelled and the lives it has touched, so thank you….. yet again.