We have been awake since 2.30am. My husband got up and went in the lounge. I drifted in and out of sleep until he came back to bed about 6.30am. He is crying. Sobbing and we hold each other. The air in our space has evaporated leaving fear and terror in its place. I cannot remember the rest of the day. I can not remember much really. I was in a total state of shock and nothing anyone could say or do was not going to erase the conversation I had yesterday. My husband is angry. Not that I have breast cancer – but that it was missed as it was. We are now waiting for the results of the biopsy of the lymph nodes to see if it has nested there. It is grade 3 so there’s a good chance of that happening. Then once it has settled here it moves and travels and spreads and destroys more of you. I have read so much by now. This is not a good thing I know that. But in some strange ways I find comfort from it too. Primary breast cancer likes to work it’s way to your liver, bones, and lungs. It may get to your brain. I scan every single target area prodding and trying to gather the evidence that it has. Grade 3….’most likely to have spread’. I thought yesterday was horrific – but now the real trauma actually begins. Your mind starts to clear a little from the thud of hearing you have cancer, and this leaves a little space. Don’t worry this soon fills up. With unwanted, brutal thoughts you cannot comprehend or reason with. It is fast and distressing in my head and I rage against myself all day. I am on my phone for hours looking for the answers I am told I have to wait between 7-10 days for.
Telling my closest friends and some of our family happened today. You try putting in a text message or an email you have cancer. I thought about how to say this to those I love. I chose the simple method and as kindly as I could I shared my news with sensitivity and courage. The responses kill me. The love and care leap from the page into my body.
I want to speak to my supervisor. Every counsellor has to have their own supervisor. An equal and collaborative relationship, supervision has equipped me with a a solid framework of support, guidance and clarity for the last 12 years. I see her monthly for a few hours. Supervision protects clients by involving an impartial third party into the therapeutic intervention. My supervisor has embodied the qualities of honesty and openness in our work and it has been an absolute honour to have had her by my side. She has modelled behaviour and skill I have tried to hone. Without her I would not be where I am today – with the confidence and knowledge I possess both personally and professionally. She was aware of my appointment yesterday and was very positive and encouraging about what the outcome would be. Today I have to tell her it didn’t go my way.
One of her daughters has had breast cancer and so did her Mum. She lived until 92 years of age, so my professional friend has history with this disease. As the words drip from my mouth, she scoops them up and cradles them in her warmth and true concern for me. In light of the whole debacle I have had to endure with my hospital team, she urges me to transfer my care to another hospital – 50 minutes from me. She knows what she is talking about – her daughters have both passed through the care of this consultant and she regards this breast clinic as the gold standard in Wales. ‘You make the choices now my dear’. These words echo through my ears. I have choices? Really? But I have cancer. As the words take a hold I feel relief whoosh in my stomach. I do have the choice who treats me and I do not in any way shape or form feel safe with the people around me right now. I want to feel I am being cared for, valued and respected. As an individual. My breast cancer may be the most ‘common sort’, but that does not mean the treatment of me has to be does it? My family deserve the best handling of me that we can find. During this short conversation something shifts between us and I can’t explain what it is. We have taken our relationship to another level now. Boundaries are there just different. I text her later in the day with the outcome of my conversation with the nurse practitioner. Her response sums it up. ‘Love you Heidi and having a gin and tonic as a toast to you my darling’. I burst into tears.
I am crying hard and constant all afternoon. People want to say the right thing and offer the right amount of empathy and compassion. I have so many answers myself and feel frustrated that I can only really share such a small portion of this story. One thing I crave from people is honesty so I ensure I deliver the same. More tests, more waiting and more appointments to be sent through to me. That is about all I can offer up at this stage.
I am now at the mercy of the consultants receptionist. I am told she will ring when my results are in. They don’t tell you over the phone.
I rang the GP to get something to help me sleep. My nurse practitioner has been with me every step of the way. She was the one who felt the lump in November. She has recently done my smear. This woman has seen parts of me I have never seen so for that I respect her! She returns my call and she knows I have cancer. She told me she found out on Friday. At last. Warmth and empathy from a woman I want to hold me. She gets this. She gets how I am feeling. I throw all my questions at her over the phone… the mammogram results from November, the cyst and its disguise as a tumour. She says I was discussed in the meeting this morning and she has ‘concerns’ about my experience so far. Oh my god – she gets that too. I can’t speak I am crying so hard and she just gives me the space to be with my pain. She knows there is nothing she can contribute to make this any better for me right now. ‘Come down to the surgery now, but I can’t promise you I won’t cry too’. I am sat opposite her within 20 minutes. She is literally waiting for me at the door with the thermometer. I talk. She listens. She has printed off all the correspondence between the hospital and the surgery for me to take with me. She takes her time going through all the letters and answering my queries as we go. It appears there was a 17mm ‘lesion’ in my breast in November. It was thought to be a cyst so no further testing was done. I am aghast. What? The tumour was there but no one thought to explore this any further? It is now almost double the size. I have to have a blood test done for CA-125 so as she nips to get the needle, I read my first ever pathology report. Under ‘conclusion’ it says, ‘No Lymph vascular invasion identified’.The comfort she shows is congruent and kind. WTF does this mean? As I am now becoming an expert in breast cancer diagnosis I think it means it hasn’t travelled to my lymph nodes. I ask her and she agrees. Yes, it means in this biopsy no evidence of cancer in the lymph nodes that were tested ( 2 I think) could be seen. Surely that is a good thing? To be fair to her she is not an expert here but she smiles at me. I am jubilant. My mind lets open another door and in floods a whole new bunch of thinking and enquiring and analysing. If this is what I think it means my disease has stayed in my breast, and if that is the case then surely I have a lesser chance of dying before the end of the year? Armed with my new hope and a prescription for Zopiclone I glide a little lighter out of her office.
I rush through the door and share the news with my husband. He has been working today (from home – Covid), and he looks absolutely shattered but on my arrival with my hopeful news his eyes come back to life for me. We both cannot understand why this was not shared with us yesterday? Maybe we have got this wrong? Maybe the consultant knows more than he was letting on? Maybe this is utter bollocks and I am riddled with it? Maybe he is lying and given the whole disgusting handling of my grade 3 tumour he just forgot to mention it? Maybe I didn’t give him the chance? And so it begins. Our chaotic conversation is interrupted as my mobile rings out. It is the breast clinic nurse who sat in on my appointment yesterday checking in with me. She said she’d make contact today but I had forgotten. I tell her the whole story – now backed up with evidence I did not have about me – myself – yesterday. ‘What about the lymph vascular invasion NOT being identified? ‘That is what we look for’ was her response. ‘This is a good thing’, but she is so very careful at what she says. It drives me nuts. Very ambiguous – like she is reading from a script and not listening to Heidi Lester. I want bloody answers of some sorts – I know she has no crystal ball but come on – throw me a few crumbs for god’s sake. ‘We aren’t expecting to find anything in the CT scan’ is the best she can do. I cling to these two sentences for the rest of the day. Google research backs me up – I find sites that help you understand the terminology of your pathology report and spend the rest of this day educating myself as to what the hell is really going on in my bra. It did help me and I know I am looking for anything and will make it fit me. But believe me I have to try. I have days of waiting ahead and I absolutely hate this feeling. I have to try and make this pass as quickly as possible and I will do anything I can to convince myself I am not going to die. I am exhausted with the energy I have used today. I still struggle to say the words ‘I have breast cancer’ out loud.
My children and I have cried together today. We are all saying the same things to one another ‘It hasn’t spread’, ‘be positive’, ‘see – it isn’t in your lymph nodes’, ‘you are strong’, ‘you can beat this’. We are on loop. They can say these things but I look into each of their eyes and I see something very different indeed. I see a panic I have never seen in them before. We vow to be honest and direct with one another. We talk about the importance of talking about feelings and fears. Either internally or externally to our unit. I ask each of them individually to look out for the other ones. I reassure them that I am here – and I want to be here to help them understand and deal with my diagnosis. I urge them to ask me anything they like. I task my closest of friends to connect to them. They had already done so. Thank you.