Six years ago, another big C sent our family into lockdown

When my husband was diagnosed with leukaemia in 2014, normal life came to a halt

Photographs of Enda - then and now.

Photographs of Enda - then and now.

 

In these abnormal coronavirus times, days, dates and even months seem irrelevant – each one segueing into another unnoticed.

But one date that is engraved in my family is May 19th.

Each year, that date swings by, is acknowledged respectfully, and then vanishes – hopefully to return the following year. May 19th, six years ago, is the day our world turned upside down – the day when my husband was diagnosed with leukaemia. The day we were shocked into the present moment.

Unimaginable fear and panic swallowed us whole.

Enda and Cliodna.
Enda and Cliodna.

The past and future seemed immaterial. The past held the life of a healthy husband, while the future questioned the life of a husband at all. Best to stay “in the moment”, where I thought no further than 15 minutes ahead. It is a mantra I still use and advise others if they find themselves in times of stress. In a way, this unwanted pandemic runs a similar path to a cancer diagnosis and recovery.

The alacrity with which the coronavirus pandemic has brought our lives to a standstill is similar to a life grinding to a halt when a cancer diagnosis is given. All holidays planned for this year are off the table, concerts cancelled, parties are abandoned, and weddings postponed. Likewise, this happened to us and it is amazing how quickly these non-essential events slip down the ladder of priority when mortality takes top billing. Hopefully all these events will materialise next year in better times.

He languished for months on a recliner in the front room – just him and his dark thoughts. A still life of sorts

Six years ago, we had booked to go to Vrboska on the island of Hvar in Croatia to stay in our friend’s home with a few others. The friends went, and we obviously could not. We decided to re-book for this year and stay with our friend, again, in his house on the island. Once more, the trip has been cancelled – this time by a nefarious virus. We hope to go next year – hopefully, neither of the big C’s will block our path.

The new Covid words that have entered our vernacular – cocooning, isolating, social distancing – are words with which bone marrow transplant patients are only too familiar. Post-transplant, my husband “cocooned” for six months at the incipient stages of his recovery, acquainting himself with his new immune system. He languished for months on a recliner in the front room – just him and his dark thoughts. A still life of sorts.

Enda and grandson Tadhg.
Enda and grandson Tadhg.

Nobody with a hint of a cough, temperature or runny nose was allowed ingress and for those who did, there was a bottle of hand sanitiser to smother their hands in. Children were off-limits too. “Eau de Parazone” lingered in the house while tea tree oil simmered slowly in multiple burners – infection-killing practices that I am sure have infiltrated many homes in recent times.

So, when the current guidelines came in, our home was familiar with them. Thankfully, we’re all in good health going through them this time, cognisant that good cocooning disciplines can achieve greater results. As my husband’s immune system grew in strength, his restrictive visiting rules were lifted – a bit like the loosening of restrictions that the Government have laid out. Believe me, they’re worth waiting for.

What is best avoided is an indolent, black mood which can atrophy hope in a second

Recently, Taoiseach Leo Varadkar has stated that Covid-19 may have been in our community since last December, and I believe this to be the case. My husband was in St James’s hospital receiving his monthly immunoglobulin G infusion – which delivers antibodies to protect against viral and bacterial infections – at the end of February, and this has had great efficacy to date. However, at the beginning of March, he was prostrate in bed, febrile and listless. An angry infection declared itself with a fanfare, hooking its teeth into every atom and amputating all of my husband’s energy. It stood head and shoulders over any infection he has had to date. We’re actually on first-name terms with the navigation of my husband’s infections; usually a visit to the doctor, one course of antibiotics and a week of rest does the trick.

But two courses of antibiotics, conflated with severe headaches, “junkie” shake sweating minus a temperature and with no real interruption to eating, suggests it was something else. Four weeks later, he was spent - bankrupt of strength. He is half hoping it was Covid so that he is either immune to it or, if he does get it, the consequences will not be so severe. Time and an antibody test will tell.

Enda walking Caoimhe up the aisle.
Enda walking Caoimhe up the aisle.

In our home, we recall past events with the prefix of “BC” (before cancer) or “AC” (after cancer) and inherently we all know the year to be 2014. The diagnosis date has left an indelible imprint on myself and my husband psychologically. Dark thoughts from the past often come to the fore – heavy with their negative cancer baggage. These need to be quickly replaced by thoughts of the healthy present and a bright future filled with the celebrations of family and friends. Future weddings and fingers crossed for the pitter-patter of more tiny feet. What is best avoided is an indolent, black mood which can atrophy hope in a second – when that happens, you’re in trouble. So best to keep everything as light and airy as possible, accepting distraction regardless of what shape it presents.

The borrowing of life afforded by my brother-in-law’s bone marrow has given my husband many supplementary years. Extra time where he was able to hold and hug his two grandsons, to walk one daughter up the aisle whilst witnessing his other daughter graduate to college. Extra time to observe his youngest son morph into a young man whilst his older son has announced a wedding in Lebanon in 2021. His path to recovery has been filled with many wobbly bits, but the thrill of being alive six years on has not been taken for granted. The greater the number of years since diagnosis, the better: the more life has been lived and enjoyed.

Going through cancer in normal times is horrendous, but going through it in a pandemic must be beyond horrific

My husband’s connection with the oncology department in St James’s Hospital is ever-present, as he attends the day clinic every month. He finds himself sitting in those big treatment chairs beside the unwell – a witness to their pain and anxiety. A constant reminder of what he went through. This time an antibody, to fight infection, races through his veins with less egregious side-effects than the toxic chemotherapy of six years ago.

Enda Sweeney with his grandson Caleb
Enda Sweeney with his grandson Caleb

He must look like an imposter to the very sick. I remember sitting with my husband during one of his chemo sessions observing a healthy-looking man getting IV treatment, and wondering, “What’s wrong with him? He couldn’t have cancer,” but inwardly hoping he had because there is nothing more ameliorating than a vision of good health in an oncology setting. Optics are everything. I hope my husband is that beacon of hope to others.

Going through cancer in normal times is horrendous, but going through it in a pandemic must be beyond horrific. My heart goes out to anyone stuck in the middle of this maelstrom. My hope is that restrictions will be lifted soon so that their friends and family can visit and help out with the basics – childcare, cooking and company – all of which were afforded to me and were lifesavers.

Six years on and our life has been decanted back to a new kind of normal. It may not be all Shangri-La, but we’ll take it. Likewise, when this pandemic is over, our lives will be recalibrated to a new landscape of normality, and we can all talk about the Big C of 2020 in the way we talk about our Big C of 2014. 

Clíodna’s blogs can be found on facebook.com/cliodnaoc and on waroncancer.com

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