Cancer is a peculiar thing. It’s all shock and horror until you have it, then it mellows with time. Well, that’s how it has been for me. You have no cancer cells in your body and the identification of one or two set you off on a dance with the disease. All of a sudden you are glad it stayed the same size, or miracle of miracles, it’s shrunk. Some days I laugh at my thinking about this side of my diagnosis. In September 2019 I was diagnosed with cervical cancer. I learned from a routine smear that the bleeding I was experiencing wasn’t the coil I had fitted “settling in”. It was cancer.
had a radical hysterectomy and oophorectomy — removal of the uterus, cervix and ovaries — in October 2019 and the tumour was bigger than was first diagnosed so I was recommended radiotherapy. That recommendation was subsequently withdrawn as the tumours had spread and, in November 2019, I was diagnosed with metastatic cervical cancer. I was recommended chemotherapy and given a poor prognosis. I have two kinds of cervical cancer, squamous cell carcinoma and adenocarcinoma — that’s unusual.
My gynaecologist and oncologist, and their respective teams, have been open, supportive and have given me great guidance through all of this. The diagnosis left me with the physical weight of anxiety, smack bang, nailed in the centre of my chest. I’ve never felt anything like it in my life. It faded in time as I processed the trauma of the news and what it meant to life from then on. In sharing the news, I learned much more about other folks’ ability to handle bad news, than my own.
I’m a huge proponent of tragic optimism and have found amazing things in my life that I would not have encountered had it not been for cancer coming into my life. Ultimately, when it came to my treatment, I was offered two options. The platinum standard chemotherapy which is the standard level of care. Or I had the option of joining a second phase clinical trial which offered a new chemotherapy combined with immunotherapy. I chose to go on the trial.
Waiting for treatment to begin is hard once you know what you need, but on January 7 last year, I had my first cycle of treatment, which was going to become my routine every 21 days. A few months later the Covid-19 pandemic made its appearance in Ireland. It was a scary time for us all. Anxiety all over the country was palpable and I could feel the anxiety of staff and fellow patients in the hospital, too. Lots of changes were made and treatment continued.
Joanna Louise Twomey has continued to engage in a mindfulness practice
My team was impressive with how they rolled with the unknown. They were my cheerleaders and during all of this turmoil they held me while I danced the dance with my cancer and its treatment. I couldn’t have done it without them. They allowed me more self-compassion and grace than I could have mustered alone. They were my anchor point through the turbulence of drugs, side effects, scans, bloods, appointments and stress. They kept me grounded.
The hardest part for me was seeing the devastation that fell on the shoulders of all those who loved me. Like my treatment team, they have held me and supported me. I’ve been on their side before and know how useless you feel and how hard it is to sit with those emotions, but they get more of the good times, the together times, the hugs and kisses. That was until Covid-19 took away some of the ability for them to do this. Some of them live in other countries, or the next county or town, meaning that at times we couldn’t be together in person due to restrictions.
Yet the pandemic was a great time for me — the first lockdown especially. Our family of six hibernated together. It was a time to process what the introduction of cancer to our family’s life experience was going to be. It was also a time to get back to basics with a simpler life. We slowed down dramatically and connected more. We laughed and screamed more, played more games and revisited lots of old memories, as well as making precious new ones. The March 2020 lockdown was time I will never get again. Work stopped. School stopped. Most of the “musts” just disappeared into thin air, and the gratitude for that time will stay with me forever.
Cancer and its treatments laid me bare. They showed me my whole self — inside and out. My fears were in my face, as well as in my body. I was thinking it and feeling it all the time. It affects all aspects of your life — physically, psychologically, sexually, socially, spiritually. The list is endless and medicine only treats part of it. I’ve continued to engage in a mindfulness practice, and my counsellor is an ever-present shoulder to lean on. My friends and family support me with love, time, food and patience, and people I don’t know pray for me. Cancer weaves a connection in the community that I wasn’t aware of before it touched my life. You become part of a club that one in two people will join in their lifetime.
Cancer’s not always terminal, but life is. I intend to live well before I die well. I realised with my cancer came a deep understanding that I will never have enough time. If I lived to 100, time will run out before I’m done and that has given me a deep sense of enjoying every damn thing I can while I’m here.
“This too shall pass” was my favourite phrase I uttered on many nights when up breast-feeding my babies. It’s the bittersweet space between knowing I’m exhausted and wanting it over and the cradled space of wanting it to last forever… it’s where I am now.
Marking International Clinical Trials Day, Cancer Trials Ireland will host a virtual Cancer Retreat on Friday May 21. Aimed at the cancer research community, the morning session is open to the public. Cancer Trials Ireland is urging people diagnosed with cancer to ‘Just Ask’ their oncologist or doctor if there is a cancer trial suitable for them. To register for the Cancer Retreat or to find out more about cancer trials or the ‘Just Ask’ campaign, visit cancertrials.ie