I’M WRITING THIS in Tallaght Hospital on 7 May and tomorrow, Monday, is my 44th Birthday.
I love birthdays – mine and other people’s, and I don’t mind at all that I’m in the hospital and scheduled to start new chemo on my birthday. It’s a gift, really.
The date 24 January 2023 is the first time I have seen my doctor’s face in full. She took her mask down briefly and said, “They found a 13cm lesion on your liver”.
When her mask came off, I knew this was not what I thought, this was serious. My nine-year-old daughter was sitting in the waiting area, so I put my own mask (both physical and emotional) back on and drove to my sister Linda’s house to tell her the news.
My mam Josie and three siblings Rob, Mark and Linda and I are incredibly close, especially since my dad Noel had motor neuron disease 11 years ago, and from this moment onwards, my sister and I have become even more close. As ‘rocks of support’ go, Linda is my boulder.
If you have seen Everything, Everywhere, All at Once, you’ll know about the rocks. I watched it while having my first round of chemo and the scenes with the rocks just hit home. Just be a rock. This is what I needed to become and surround myself with all the other rocks I have in my life. It turned out I had a pebble beach I didn’t even know about!
I have been the full-time manager of the Moat Theatre in Naas since 2018 and have worked there for 14 years in total. I had a vision of this creative space for all people, and even when Covid hit, I did all I could to keep it going. As a single mother, trying to stay on top of the bills and make sure my daughter has everything she needs, I also teach Zumba.
I had fallen off a horse when I was 18 and have experienced pain in my shoulder for the longest time. I always just assumed it was damage from the fall, agitated by working out or some of the physical aspects of my job.
Around the summer of 2022, it was too hard to ignore, especially when I was encouraging my class members to go harder while hiding my own discomfort. My bras had also felt too tight around the band, but I thought it was a bit of lockdown weight gain. I had tried a few things to ease the pain, but it didn’t go away.
In November I was feeling so tired all the time, had a bit of a wheeze and generally felt quite run down. It’s a busy season in the theatre in the normal run up to Christmas, so I again assumed that’s all it was but checked in with my GP, who said it was pleurisy and prescribed antibiotics and to get physio for my shoulder.
When I just didn’t get better it was suggested it might be perimenopause, anxiety, work related stress and so on but she put me on the waiting list for an MRI for my shoulder.
I took a day trip to Dublin in January 2023 with my oldest and wisest friend Maria and our nine year olds. When we were eating dinner that night, I commented that it felt very uncomfortable to have even a small glass of wine over Christmas. She convinced me to keep chasing it, and not to ignore it.
So back to the doctor, I went; she sent me straight to Naas Hospital Emergency Department as she feared I may have thrown a blood clot. The doctor there said it wasn’t a clot but was stuck on the pleurisy diagnosis.
Then there was another trip to an out-of-hours clinic when I was in a lot of pain, but they heard ‘pleurisy’ and stuck with it – sticking me with injectable steroids. I went back to my own doctor, still waiting for word on the MRI, because I felt there was something lodged in my side that the doctor could now feel herself.
I booked and paid for a private ultrasound and a mammogram just in case.
The world began to spiral into endless doctor appointments – I have lost count. The retired former manager of the Moat Theatre, my dear friend Kathleen, stepped in to allow me time to attend them. Even though I had private health insurance, I had a brief consultation with a specialist who told me I have a lesion on my liver which is 13cm in diameter, and there was more than one.
Her advice was priceless: don’t wait – go straight to Emergency to get help now. All the money I have paid over the years didn’t make a difference in expediting my care.
I went straight there and had to wait alone, though family and friends were messaging and dropping off snacks. Panic began to set in – it’s a Friday, none of the tests can begin until Monday, what if I died tonight, I wouldn’t get to see my daughter, I hadn’t fed my animals, I wanted my Mam! I was eventually moved to a ward, my family took over minding my daughter, and my mini menagerie of pets at home and messages of support rolled in from my friends and theatre family.
It’s February 2023 now, but I still haven’t heard the word “cancer” yet. My friend Fiona and I had saved up and booked a couple of days at Center Parcs with our three children. Fiona’s mother had died from cancer and I could see how worried she was. We decided to relax for the weekend and shared some wine when the kids went to bed.
I suddenly developed a severe pain in my right leg, so I went back to the Emergency Department with a suspected clot.
Clot indeed! This is where I really registered it was probably cancer as you develop clots very easily. I tell my daughter that Mammy is sick and has to spend more time in the hospital but that she was being so well minded by Nanny and Aunty Linda, it was like a continuation of her holiday.
I was sent home to self-administer blood thinning injections. I still hadn’t been told anything and was becoming worn out with the constant self-advocacy. I rang my own lifelong GP, who saw me almost immediately. I could see this was not the news she ever wanted to give me.
Yes, Celine, it is cancer. They don’t know where it has come from.
The next day I received a call to ask if I had been informed. I guess I had been lost in paperwork, I understand that happening, I deal with paperwork myself, but this wasn’t a lost booking or invoice – this is my life.
I was told that I have CUP – Carcinoma of Unknown Primary – they know what it is but not where it started. I was put in touch with the oncology team, who are brilliant, and the ball was rolling. (My love of collecting cups and the irony of it all is not lost on me; even my daughter found it hilarious).
The following day, Saturday 4 March, was my last Zumba class. My class didn’t know I was coming; I just turned up to dance. The emotion in that room tasted like JOY. We all danced, we all laughed, we all got a little emotional.
Many people have asked me how I told my brave little girl the news. From the very beginning, I told Elanor I was sick, and not normal sickness. I would be in and out of hospital a lot.
I told her about the port for my chemo and showed her what she wanted to see. Then, on the day I had decided to finally bring up the word, she asked me. It was easy really: Yes my love, I have cancer. Do you know the word? You do! What does it mean to you? “Ooffed” she said, meaning “dead”.
I asked her “Do you hear that truck outside? If we stood in front of it right now, would we be ooffed?” Yes probably, she answered.
“Do you know what is good about a cancer diagnosis? We have time! I will be taking time off work to get treatment and we can make art and go for little walks when I’m feeling well!”
I could see the tears starting but they quickly stopped. She told my sister Linda later she decided not to cry at that moment. We have cried together and have had moments since, but that one was special.
My treatment began on a Tuesday, with chemotherapy called Folfox. I had my port inserted and shared a photo of me smiling and happy in my hospital gown. Did you know the many brands of chemo out there? LOTS!
I didn’t want to be a number in this whole process and apart from the confusion around telling me, I generally haven’t been.
The oncology team in Naas is incredible. I call them with weird questions; they answer. Neuropathy: hand cramps, jaw cramps, unable to eat because of the pain and apologies for this: Poop! Why can’t I or why can’t I stop?! I feel especially bad for asking those questions, but they are endlessly patient with me. It reminded me of being amused when I had Elanor and my sister asked me what colour her poop was when she wasn’t well.
I was also introduced to my palliative care team. When I, and others, heard that word it was terrifying. We often associate palliative care with end-of-life care, but it really is pain management.
I’m still scared of the words palliative care if I’m honest; I keep saying pain management Celine, pain management, pain management, pain management! I can only describe the pain as like carrying a baby in the wrong part of your body. It’s a 13cm lesion on the liver; like an uncomfortable, internal orange I didn’t ask for.
The oncology team has a very tough job, one I don’t envy. They can’t give me straight answers; it takes time and trial and sometimes error to get treatment for cancer right. And I have a cancer that is not straightforward. No serious illness is “straightforward”. It’s a fingerprint unique to each patient.
At the time of writing, I had three rounds of chemo so far, but it wasn’t working, and my white blood cell count was high. I was started on antibiotics for an infection but became unwell and was admitted. They suspect the infection might have come from my Port so I’m waiting for word on that being changed.
I was born, bred and buttered in Naas town and having worked in theatre and radio in Kildare, have met so many people but I still didn’t comprehend how many people I knew until the well-wishes started rolling in.
My KFM colleague Eoin interviewed me for his radio show, and I spoke about advocating for your health care and not being dismissed under the “perimenopause umbrella” of symptoms.
From that day on I received messages, cards, and letters of support from all over. Even from people who had seen me on RTÉ’s Home Rescue. I was sent beautiful letters that were pure hope, oozing love, and energy. I felt loved. My friend Aoife said that “If goodwill could cure cancer, you’d be home and dry” and it’s so true. People are SO kind and good and have been incredibly generous.
My former manager and stand-in at the Moat, Kathleen Smith, organised a GoFundMe to raise funds for my medical and other bills. Friends and colleagues from the Zumba, theatre and music communities in Naas began organising events to add to the fund. My ‘oldest and wisest’ friend Maria and I escaped for a break with our children to my favourite Airbnb, Spellcast Cottage in Enniscorthy. The most amazing owners, Allie and Olivia, made it feel like home as always. It was magical. They gave me a Hedwig on leaving, which now homes my night mask. Elanor says it makes sense as owls are nocturnal.
If you are worried about your health, don’t wait. I didn’t. I pushed for a diagnosis and my GP did too. I do sometimes think that if I had listened to my body back when my bras were too tight, this would be different.
If I didn’t blame being stuck at home during Covid for my weight gain, or “that’s just an old injury” as the reason for pain, I could have been down the treatment path months earlier. Don’t feel silly to ask questions. Don’t feel wrong to get that other scan. Doctors don’t mind and neither does your health insurance.
Oh, and check what your insurance covered – mine covered nothing! Be kind to the machine that is your body. It does a lot.
Love and take care of yourself. Do it today, in whatever way makes you happy. Do something for you. People ask if they can do anything for me right now and I tell them to do something for YOU, then you are doing something for me. Does that make sense?
Though I try not to, I do think of the “Doom”. Not for too long, as it’s something I’ve already pondered, especially when my dad died just before I found out I was pregnant with Elanor.
I don’t fear it, I just don’t want to leave people behind, so you’re all coming with me! And my plan for when I do die is epic, a very ‘me’ plan. But that’s “someday”, not “today”. I just simply love existing. I wake up saying “here I am world, what shite you got today and what colour is it?”
Celine Garvey is the Manager of The Moat Theatre in Naas.
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