Claire Scoles life changed forever when her beloved Chris was diagnosed with a stage four neuroendocrine gastro-oesophageal tumour.
Sharing her story for National Palliative Care Week 2020, Claire reflects on her and Chris’ journey and how end of life wishes can be so simple yet so meaningful.
I remember standing in our bathroom, still reeling from the shock and I looked at our toothbrushes sitting together in their cup as they had done for the last six years. All I could think was ‘how will I bring myself to throw his out?’ The tiny details of your togetherness become so blinding when you are faced with a future without your person. One year ago, Chris and I sat in the office of a surgeon I knew and trusted as he said, “the biopsy showed an undifferentiated cell type”. I am a nurse, I knew what that meant; aggressive, fast growing. The rest was a blur of words “stage four, we can’t operate, metastatic spread, you’ll never go back to work” as this doctor I’d worked with and respected for years, with his immense physical presence, quick wit and larger than life attitude stepped out when he could no longer hold back his tears.
Chris was 48 years old; he ran his own business, he was fit and healthy, we’d built a home together and blended our family of five children. Now we were holding each other on the floor of the doctor’s office as he promptly passed out from the shock of the news. My heart was broken that day, but my eyes were opened. Our life was suddenly stripped back to reveal what really matters (spoiler alert it isn’t ‘things’), the kindness and generosity of friends family and strangers, the ferocious fighting spirit of my husband and his capacity for hope and the deep and unwavering connection of our love for each other. For this I am forever grateful.
Chris was diagnosed with a stage four neuroendocrine gastro-oesophageal tumour with a poor prognosis and those of us closest to him were given a different prognosis, helplessness, and despair. We embarked upon the schedule of palliative chemotherapy with gusto and dogged determination, the oncologist optimistic that being young fit and healthy Chris would be able to withstand an aggressive regime to buy us some precious time as a family. Our chemo days became like an ‘outing’ we developed a routine as Chris requested his favourite treatment chairs in the day oncology unit and he thoroughly enjoyed seeing the same nurses time and time again. I made healthy snacks for us in a last-ditch attempt to regain control by providing optimal nutrition! We researched clinical trials, read articles, and sat together holding hands watching Netflix as bag after bag of poison was pumped into his body. Strange as it may sound, they are some of my fondest memories…. Our time with each other was ours, the simple act of being together without the need for anything else taught me how to truly be present in that moment.
We shared pictures and stories of our journey, mostly to keep the emails, texts and calls from becoming overwhelming and to give us a sense that WE were telling this story, not cancer. Chris was doing well, aside from a few setbacks and a couple of trips to the emergency department we were fighting this…. Together. I can’t speak to his feelings in and around this time, but I would often find myself wondering ‘how is this going to look next week? Next month?’ In the absence of hope you know this will end but how? When? You live each day analysing every symptom, monitoring appetite, checking for infections, and wondering how on earth you will ever live without the person you love the most. You feel guilty for even allowing yourself to think such things when he is the one facing this, he is the one who doesn’t get to see the kids grow up. So you hold in your tears and sob silently in the shower every night, because somehow you have to keep it together, you get the kids to school, you organise the appointments, make sure everyone is fed and go to work with this constant knot of anxiety in your stomach, an ever present nausea that reminds you things are not ok but you need to hold on to the hope, it’s all you have.
My narrative was never, “I didn’t think this could happen to us”. I see patients in my operating theatre every single day fighting a battle they had never considered would be part of their life journey. Cancer was and still is ever present in my life, I understood the biology, the terminology, and the treatment cycles but when it is happening to your loved one you feel just as helpless, lost and alone. I looked for support, I reached out to my GP I saw a psychologist, but I just could not engage with anyone. I craved some answers from those who had walked this path before me, someone who knew what this was like, the anticipatory grief a widow in waiting. My wish now is to offer that to others who find themselves in that space, not quite a card-carrying widow where support is plentiful but in this strange limbo.
Trying to ‘live’ in the presence of a terminal diagnosis is the most difficult thing of all, to balance the need for normalcy and doing the washing with conversations about funeral arrangements becomes your new normal. As Chris’ health continued to be steady, we went on a holiday to NZ in July, #makingmemories became our catchcry! It was an epic week, we were so blessed that Chris was able to enjoy such an amazing time, his energy levels were great, his appetite was good and somehow we managed to overshadow the cloud of cancer with the enormity of our love in that moment. During a helicopter ride to Milford sound we perched atop a glacier stepping out to take in the magnificence of the view, I turned to see Chris on bended knee proposing marriage – best day ever. We took great delight in sharing our news with everyone and wedding planning became a great distraction from cancer, the nurses in the oncology unit were thrilled and wanted to be bridesmaids!
We planned a simple ceremony close to home for the 26th September but during August Chris’ condition was deteriorated. I knew deep down that we were now on this downhill slope, a PET scan confirmed that not only had the last 3 rounds of chemo not worked as well as the first but the cancer was now growing and spreading rapidly. We had already discussed end of life care plans, something I have subsequently become passionate and vocal about. Chris hated hospital and it was his wish to spend his last days at home. We made the decision to cease all active treatment, which in a way feels like abandoning hope but in reality allows you to slow down and savour the moment for what it is, acceptance in this time is incredibly difficult it feels like giving up. I worked with the treating team to organise palliative care support so it would be ready when we needed it, I thought I had time, I thought this would happen much later, it’s surreal to live with a terminal diagnosis for 4 months but still feel gut punched when the nurse says through her tears, ‘listen to me, you need to get married this weekend he’s not going to make it’.
We were married the next day, September 19th, 2019 at home in a beautiful ceremony in our backyard with just our nearest and dearest. It was perfect, you don’t need fancy flowers or an elaborate cake…. All you need is love. That day I became his wife forever, it was my privilege to continue caring for him in our home with whatever support I needed from our local palliative care service. Working in an acute care setting I had never truly appreciated the role of community palliative care, giving people choices at end of life is truly a service we do not speak enough about in our grief averse culture. I was humbled to welcome palliative care nurses into my home, Cat who sat in my kitchen just chatting with me as Chris rested. She gave me the courage to accept that what I was giving Chris was a precious gift, a good death. Whilst we planned a life together much longer than the one we had, I don’t imagine it could have been any fuller. In facing death, you can choose so clearly how you want to live, and we chose each other. I held his hand in our bed as he passed away later that evening on October 5th, 2019.
So here I am, one year from the day of diagnosis; a young widow. At age 40, it is about the only thing I’m considered ‘young’ for these days! There is something about the cycle of the year, the passing of seasons, the circle of life perhaps that make anniversaries more poignant. The chill in the air today, the way the light shines in the window at certain times of the day will serve as a reminder of the day my life ceased to exist as I knew it and my eyes were opened to a more connected way of living, one in which I hope can make a difference to others.
