On May 26th 2020 at approximately 10:54 am my life changed forever. A man who had known me less than an hour in total told me he ‘was right to be suspicious’ about a ‘mass’ he had found in my breast 9 days earlier. He had already drained my breast cyst again and found ‘another component’. He did a biopsy, and I had been waiting for the results ever since.
I found a lump in my breast 5 days before we were going to Disneyland in Florida. It was November 2019. Straight to the GP and a referral to the breast clinic was made. I had a breast cyst diagnosed and drained a week after I returned. I remember seeing my tan marks from my bikini as I lay there for the first time (it what has now turned out to be many times) arm in the air, boobs out, having an ultrasound scan. A bit like Mickey’s ears looking back at me?! Both the consultant who had carried out the ultra sound, and ‘partially drained’ the cyst, and the radiographer who had the done the mammogram put their names to the ‘all clear’ letter I received in February 2020.
Clearly now they had been wrong. Very wrong. He didn’t even say ‘you have cancer’.He said I had a tumour. What? I had to ask him, ‘Have I got breast cancer?’ He nodded. Looking away. This did not make sense. What has happened for him to be telling me this now? It was a cyst. Why didn’t he say ‘cancer?’ Is this because he knows there was a mistake and a misdiagnosis by his colleague just over 6 months ago? Does he feel sorry for me? Is he not saying the startling truth ‘you have cancer Mrs Lester’ to somehow try and minimise something that is bigger than anything I can ever get my head around. You see this on the TV, in films, not in my body and not in my life.
Shocked. Anxious. Frightened. Ashamed. Mix up those emotional reactions and you have a tiny idea as to how those seconds, then minutes start to feel. My breath kept coming and I have no idea how. I felt my eyes fill with something strong. Whatever it was it dulled my vision, then my soul, then my ability to communicate. Not sure what order that went in. Covid 19 isn’t anything new anymore, so my hands are protected by latex. My husbands were too. He put his rubbery hand on mine and I just pushed it away. The material, the texture wasn’t him. It didn’t feel like him. But I no longer felt like me.
‘Am I dying?’ – he did reply and this was the only time in my 20 minute consultation I felt any warmth or empathy come from this thin, grey haired man. I can’t remember now what he said but it was along the lines of ‘that isn’t what we are considering right now’. So what now?
I’m lying back on his bed, blue tissue paper as my fitted sheet, rising up to the ceiling so he can have another look at my small diseased breast. Except my cancer tumour has a friend again – a cyst to keep it company. This has filled again, so the needle goes back in. My husband is crying. ‘I’m sorry’, I whisper. I look to those nasty tiles on the ceiling and can’t feel the edges of my body. I know I am lying down as my arm is stretched in the air above my head as I am being told the lymph nodes are being biopsied and the air loaded needle ‘will make a noise’. I’m fixated on two little holes in the contraption that holds a manky old curtain in place. Two holes. Two breasts. Not any more.
I ask questions I think he avoids – later I will analyse the hell out of these responses. ‘I should have done a lymph node biopsy last time you were here, but we were both a little ‘spooked’ at what we found’. He actually said this to me. Him ‘spooked’? It’s his job isn’t it to find the worse and hope it’s the best? I actually don’t think he is warm person. I want so desperately to feel warmth off him – to feel encouraged. I want him to now say ‘we have found it early’. Instead I get his clinical response ‘You need another mammogram and a CT scan’. I am told this mass of disease in me is ‘a grade 3’ – basically the worst it can be – aggressive and fast growing. So why the f*** wasn’t this found in November 2019? I ask him – I don’t remember the response. It was later my husband told me ‘it was missed’. I’m sick. I’m angry and I don’t want to die. I want to go back to November 19 and insist on a second opinion.
This is the darkest place in my mind I have ever been. People have described it as suffocating. I’m hungry for air but no longer have the ability to breathe. Since my last biopsy, I have wondered what it would feel like to me to be taking part in a dialogue like this one. You think you have an idea as to what you would say and how you think you would feel. I did think I would maybe collapse, fall to the floor, or walk out of the room. Or be really positive and accept my fate with grace and integrity. I don’t opt for either of these. I sink into my mind, into a place that has never been occupied before. It’s bitterly cold, a place where I am no longer the author of my life. I feel incapable of navigating my way out of this space as powerlessness and doom shroud me. I feel like I am moving but I am actually still. I am so so miserable – heavy with the drag of helplessness. I am terrified and lonely and with each hard heart beat I fall further into this deep and bottomless chasm. Please help me.
Mammograms are quite unusual experiences. My second one is far more uncomfortable than my first. My breast and arm pit are sore from the recent intrusion, plus the footprints of the recent conversation, are, I’m sure contributing to the pain I feel as the radiographer is trying her best to get the pictures she needs with the least harm possible to me. It’s a clinical, cold experience and I am empty and lost as the machine twists and turns itself into motion and records the images of the cancer. This is not my first ‘cancer selfie’. Oh no. But the first selfie was disregarded and not not deemed worth posting or sharing anywhere. At this point the rage and hostility I feel are encouraging me to explode right here. Right now.
After my mammogram, I walk back to a small airless room where my husband sits. He too now has cancer. And I’ve let him down. I’m 46 years old, I have 3 teenagers and now rather than being responsible for ironing their clothes, buying their socks, taking them to their friends, and cooking their roast dinner, I’m responsible for the pain, fear and anxiety they’re going to feel now.
I’m handed a small folder with information about primary breast cancer. I’m given a telephone number. WTF difference will this make? I want answers and I want to know when I am going to die.
We walk back to the car. It’s 11.50am. And here starts the rest of the journey I never wanted to make. A journey others make and not me. I don’t deserve this. No one does. I’m too young I think. I even have the slightest flicker of a feeling that I am just ‘too nice’ a person to have this. I am a good person working hard to be with other good pain and help their suffering. Surely that makes me immune to cancer? How pathetically naive is this Heidi. You got this very wrong. I have neglected pragmatism in favor of moral idealism. What a lack of judgement and wisdom.
I have loved lock down. Real precious time with my family – just the 5 of us. Except it hasn’t been has it? We’ve been silently accompanied by an expanding cancer tumor that wants to end me . Why? Why me?
We sit and cry in the car. My husband holds me. It’s fierce and his blood rages through him as mine trickles through slowly. Maybe even reversing. He says something like “We can fight this – you are so strong Heidi”. Through gloopy eyes and full heavy tears I nod. I don’t believe a f***ing word of it.
He tells our children. I sit there morbid – childlike – like I’m getting told off. The weight in our lounge stings me. Not felt like this before. It’s where we open Christmas and birthday presents, dance around like idiots if we have a few too many, watch Coronation Street eating take out. I am now at a total loss in this room. I muster a smile for them – I remember that. I feel numb. I feel dead. Maybe this is how it feels I wonder? I am not present and I do not feel alive in my own senses and reality. My eldest daughter hugs me and I feel a part of my heart snap off. It floats away and I hope it meets my tumor and takes that with it too. They make me dinner and we eat in such an outlandish atmosphere. I think harder than I have ever done and I am sick with ferocity of this cyclone in my mind. I have always hated roller coasters and this is why. I’m now officially out of control. A 3cm tumor has taken the driving seat. Its strapped in but I am not. And we are going faster and faster as it accelerates through the gears, and I can’t get out. I’ve never been so scared in all my life.