My Hodgkin's Lymphoma Diary: Results Day

Christmas passed and was as eventful as ever. I actually managed to get drunk for the first time in about nine months. I’m definitely feeling better...
And then the day of my scan came. There’s not much to say about it, really. I knew the drill; I knew what to expect. Secretly, I was feeling confident – very confident, in fact – that all would be okay. Most of the initial anxiety I’d had about my scan results had disappeared into the ether. I was pretty sure that all was well in my body and that I’d definitely kicked cancer’s ass. I kept these thoughts to myself; I didn’t want to jinx it by screaming at the top of my lungs that I felt fucking MINT! But surely the cancer had gone, right? I had done everything in my power to kick this godawful disease. I had given up my life as a young, fun-loving woman living the dream in London in order to combat this darn thing. I’d sacrificed a lot. I’d given up my career, which I’d spent years working on, my beautiful, newly decorated flat; I’d given up London, my freedom, my independence; I’d given up smoking, drinking alcohol, partying; I’d given up anything causing me stress; I’d given up visiting people, travelling, my hair, my eyelashes, my eyebrows; I’d given up my healthy, fit body, days of my time to hospital visits, chemo club and my bed; I’d given up a sense of who I was, I’d given away a chunk of my mind to anxiety and worry, I’d given up part of my soul to this disease. I used everything in my power to get better. I exercised as much as I could, I did yoga almost daily, I ate and ate and ate to rebuild strength. I started writing to make sense of what was happening. On occasions, I even prayed to a higher being (I’m an atheist FYI), and I trusted my nurses and doctors 100% that I would get better. Every-fucking-thing I could do or not do, I did, in order to say goodbye to cancer. It was up to the cosmos now, for my stars to align and for everything to be put right in the world of Ariane. It was a new year, the start of 2017 and people were banging on about new moons or some shit – surely I was going to be given the all-clear?
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So upon hearing the news from my consultant, during my results appointment, that it was not the all-clear I was hoping for, I felt myself begin to crumble. There was a tugging at my heart, a tightening of my throat. I wanted to cry but I didn’t; I had to hold it together. My parents and Barry and my brother were all there, all with their fingers tightly crossed, waiting with bated breath for the positive news, too. They were in this with me, they had been from day dot; I couldn’t let them down, not at this stage. So I pretended I was okay, nodding along with my consultant, asking all the right questions, and I left Dr. Kinetchli’s consulting room with a brave smile beaming across my face. Then I went to Wagamama and ate noodles – always a good idea when in crisis, just so you know. Everyone consoled me, told me that it was great news, that my consultant was just being over-cautious, that of course Peter Johnson [the second-opinion doctor they were sending my results off to] would conclude that the tiny, glowing bit still visible on my scan was just an anomaly and nothing to worry about.

I’d envisioned being given the all-clear, then everyone group hugging outside the hospital, then off to a bar to pop a bottle of champagne to celebrate my remission. Instead I’d been thrown into the dark underworld once more.

But I was disappointed, bitterly disappointed. It was not how I’d imagined it would be. I hate it when that bloody happens, when expectation doesn’t match up to reality. I’d envisioned being given the all-clear, everyone group-hugging outside the hospital, then off to a bar to pop a bottle of champagne to celebrate my remission. Instead I’d been thrown into the dark underworld once more, left on my own to try and make sense of my fucking cancer.
We are brought up to believe that science and medicine have the answers. They are based on fact and actuality, so they are always clear-cut, right? But science is not absolute. And medicine is not black and white. Sometimes, it is grey. Not a Farrow & Ball perfect grey but rather a deep, dismal grey – the kind of overcast grey that spoils an otherwise perfectly sunny afternoon. My results were grey. I was gutted. I wanted a clean scan result, no areas left glowing. Contrary to popular usage, in cancer terms, 'glowing' equals bad. A glowing area on a scan result shows where there is still an FDG uptake, abnormal cellular activity, and in most cases signifies that disease is present. In my case there was still a teeny, tiny part in the centre of my chest glowing. “It might be Hodgkin’s, it might not be” explained my consultant. So what were the options? We could do another biopsy, but it would be very invasive and the results may still prove inconclusive. We could give me some more chemo but my body had already been battered enough and Doc wasn’t keen, unless it was absolutely necessary. Then there was the option of radiotherapy but, being so young, my consultant wasn’t keen to do this either. Radio has all sorts of nasty side-effects, including an increased risk of breast and lung cancer as well as coronary heart disease. And so, he decided he would speak with the most senior consultant on Hodgkin’s in the UK, Peter Johnson, to get a second opinion and to help determine the next best step. He did leave me with a wonderful, simple piece of advice, something that I must hold on to and that will give me strength when my mind starts to cloud with anxiety and paranoia once more, which inevitably it will. He said: “If you feel well, then you are well.” Sometimes we don’t need to look to science for all the answers, we just need to listen closely to our bodies and trust, trust, trust that we are well and that we will be alright.
That day was the first day of the rest of my life: learning to live with having had cancer, and the possibility that it could skulk back into my life, with no prior warning or invite. For now, I am getting on with life. I am writing a book about my experience, I am planning a road trip all the way to Sicily, I am feeling good. And positive, and excited for my next chapter. Fuck cancer.
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