‘Two days after our honeymoon, my husband was diagnosed with leukaemia. It became our illness.’

“Looking back, there were a few red flags. We flew to South Africa for a week of safari before heading to the Maldives. It was our dream trip but Ciaran just couldn’t shake what we thought was his winter cold.

He struggled to walk up a tiny hill and was very tired. He slept quite a bit during the day which we put down to jet-lag and, most alarmingly, when he stepped on the scales in the hotel, he had dropped a considerable amount of weight.

A terrible feeling

I guess towards the end of the trip Ciaran was feeling about 80% better, but we knew something still wasn’t quite right. We arrived home late on Jan 20th, and we were both set to get back into work for the new year. Ciaran decided to go and get a full medical done to see if they could catch the suspected ‘virus’ that was depleting his energy.

On Jan 22nd, two days after our honeymoon and two hours after a full medical, Ciaran got a call to say there were serious abnormalities in his blood and that he needed to get into A&E immediately.

We jumped in the car and drove into the hospital. I knew as soon as we arrived and he was waiting to see a haematologist that it was obviously blood-related. I stepped away from Ciaran and called my mam, who is extremely knowledgable in medicine, and I asked her ‘Do you think it’s leukaemia?’

I had a terrible feeling it was bad news, even though I stayed really positive with Ciaran because I didn’t want to show any worry whatsoever.

It was only 30 minutes after arriving to the hospital that we were taken to a room and told the news that he had AML, an extremely aggressive form of leukaemia and that he was looking at a ‘Life Termination’ if he didn’t start treatment immediately. I knew at that moment it wasn’t my time to freak out. I needed to be strong for him. I did cry, of course, but I didn’t break down.

Poor Ciaran kept apologising for upsetting me, but I told him then, and I meant it, that he was going to be okay, that we would treat this and get over it.

From the moment I heard there was a plan of treatment that’s what I focused on. I felt like we were blessed he had a plan and that’s what I kept my mind on.

Our illness

I stayed with Ciaran that night. It was a Tuesday, and I’ll be honest, by the time I ate something again it was Thursday and I still hadn’t left his hospital room. I spoke to the nurses, who were excellent, and I more or less told them I was moving in. Ciaran was very low and anxious and I needed to be there.

I needed him to know he was going to be fine anytime I felt he faltered. I slept on a chair for the first six nights and then the staff put a spare mattress in the room for me and I stayed every single night.

It was 35 nights the first round and 33 nights the second round of nearly 70 hospital sleepovers after our honeymoon. I was not allowed to stay in St James, but I was there 18 hours a day most days for that stay, which was 23 days. We were in this together.

Project Ciaran

I think it’s really important for people to know that even the person that seems the most positive has really bad days. I did have really bad days. I cried, and cry, a lot but I suppose if I’m honest, I saw it as a project; I broke the treatment down and I set goals for us after treatment. I became the project manager of what Ciaran was going through. It became our illness.

I think a few things really helped me. Firstly, I control what I can. I couldn’t control his staying in hospital but I could control decorating the room so it was homely.

I also began using Instagram and connecting with people who had been on similar journeys. I connected with at least 10 people who had been diagnosed with what Ciaran had and are doing well now. It was important for me to have successful case studies for when Ciaran was having a low day or if he felt really sick or frightened he knew what he was experiencing was normal.

I also studied as if I was in medical school. I read everything I could on AML but I was selective. I avoided Google. I stuck to Mayo Clinic and medical papers because it was important to me that I could back up my reassurance with fact when talking to my husband.

Outlet

Very early on Ciaran agreed to just take the medicine but didn’t want to know anything about it or what to expect, so I went to all medical meetings which were most days and now down to once a week! I still go to every single one.

In order to cope, I had my own outlets, one of which I refer to as my therapy. Instagram was that outlet.

Lying on a hospital floor when Ciaran was asleep was one of the loneliest places in the world. I would watch every Instagram story on my feed to think about anything except what was going on. I talked to my family (I have a big family). I spoke to one member every single day and usually cried and had my wobble with them so I could be strong for Ciaran.

I also made sure I was very selective who I spoke to – I didn’t like speaking to negative people at all. I was aware how serious things were. We always knew there was a chance of death, but I don’t need to talk about that to people. Some people in your life love the drama of things and focus on that stuff – STAY AWAY FROM THEM DURING THESE TIMES!

I found that journaling helped too. I journal every single day – and it’s been a godsend. I’ve been doing it for years but it really does help me focus on the positives even in the most negative of situations. I also meditated most nights when Ciaran was asleep – it kept me calm.

The transplant

My lowest days were the days he was at the bottom because that broke my heart to see. I think the day we had the consultation for his transplant, we knew the conversation was coming, I think I was a little more prepared than him because I studied and read the info that he was ignoring.

We made our way over to St James hospital for an 8am appointment and it was a new hospital, new team, a very serious procedure and essentially life and death situations being discussed. It was an agonising hour-long discussion in which everything was discussed, his percentage of death was worked out, serious side effects, life-changing consequences.

To watch him sit there listen to it for the first time while rubbing his dad’s watch (he wore for luck) really broke my heart and it makes me cry when I think of it. He was like a little boy at that moment. My strong husband reduced to a very vulnerable soul. I felt like I’d been protecting him from all this information and I wish in some ways that I’d prepared him more.

They told him he had time to think about the transplant and that chemo would be an option for him but there was a higher chance of relapse. We walked back to the car after that appointment and he didn’t say a word. I knew he needed to just get out of there. As soon as the car door closed he broke down – I’d never seen him cry like that.

It was like the realisation of everything was just hitting him. That was one of the lowest days that we had. I remember feeling so angry that this was happening to him.

I wanted nothing more than to take it all away… but I couldn’t.

Therapy

Some people might find this bizarre to hear, but Instagram saved me this year. It really was my therapy and still is. I spent hours every day in hospital and slept on the floor. Ciaran was tired and wasn’t always up for chats, he slept a lot so I started chatting to my phone.

It wasn’t always about Ciaran — it might have been about something as simple as my lip balm because my lips were dry, my face tan, doing yoga in the room, meditating and then, of course, we were sharing parts of Ciaran’s story too in order to pay it forward for the future people who might go through this or something like this.

Social media can be such a dark, negative place and I’ve had a few keyboard warriors being horrible, but for the most part it’s had such a positive impact on my life and our journey through his illness when we needed it the most and we are so grateful.

It was 100% escapism. It transported me to a different place – it still does. I might be on chatting about hair extensions and you might see three minutes of my day that looks really happy but there is a person behind that. I was struggling some days but when the camera is on it’s like a job to put your best face forward.

Sometimes you need to fake it till you make it, and some days Instagram tricked me into being happy and then I’d stay that way.

Mindset

What’s changed since the diagnosis? Well, both myself and Ciaran were obsessed with working before he got sick. Ambition was probably one of the things that attracted us to each other. The night he was diagnosed I was willing to quit everything for him and it was like one of the biggest lightbulb moments of my life.

Work, excelling in my career, chasing the big job, earning lots of money… suddenly it just didn’t matter anymore. None of this would help when your loved one is gravely ill. I took a leave of absence from a dream job that I just started a few months prior to him being diagnosed and I am still on carer’s leave today as he slowly recovers. I don’t think my attitude to work and the normal level of stress it brings will ever be the same. It’s just not worth it anymore. The wealthiest people are those people with good health.

I’ve always been quite selfish, but even more so now with my time. I try and only invest in people or situations that are good for me and bring me joy. We just don’t have enough time on this earth to waste any of it on the people or situations that don’t matter.

I learnt that I can’t control everything. This is something I really struggled with at the start. I’m a person that makes plans, I work off timelines and I like to know when things will be complete. All of this went out the window this year, and when I don’t have some level of control anxiety creeps in.

I started to focus on the things I could control – decorating the hospital room so it felt homely, drinking and eating the right food to stay well while we were in the hospital. Putting my face tan on and even sneaking out of hospital for a blow-dry! You need to control the controllable.

The surprises

On this journey, I’ve learnt that some people will surprise you. One thing that really has taken us quite aback is the people that supported us and the people that really didn’t. It is actually so surprising because sometimes the people you think will be there for you, maybe for their own reasons really can’t handle the situation, are just not there. And the last people we expected to support were in the room, sending gifts and giving hugs.

Life-changing situations make you asses a lot of relationships and some you may have thought were the strongest really aren’t – this happens because your morals, life goals, purpose and outlook all change and maybe you don’t align anymore personally – this was one of the hardest to swallow for me.

I will now be one of those people that buys the card, drops the text and reaches out when someone’s world turns upside down because I never did it before. I guess you always think someone else will reach out… don’t leave them and give them space – reach out they need you.

When it comes to advice, I’d say always be very aware of asking a person how they are. I often heard mothers talk about this after they have a baby – people stop you and say “how is the baby,” totally overlooking you! This happens to me every single day and it really does upset me and not in a selfish way.

I’m so pleased people care for Ciaran and ask after him but some days I’m not doing well, I’m tired and I’m recovering from our life turning upside down too so don’t forget about the person you are talking to and ask how they are.

We are blessed that we were hard workers and savers so the last thing I would say is to save for that rainy day unfortunately for us it did come early but we are so lucky we have our fund.

Team support

For anyone reading this in a similar situation, remember that things always get better. It’s not easy watching someone you love in so much mental and physical turmoil but they are hooked up to the medicine and have a team of doctors and nurses caring for them to build them up. You need to have your team around you and learn what your own medicine is – yoga, reading, a phone call with your mam, popping fake tan on or chatting on Instagram.

It’s a dark place so you need to escape and some kinds of outlets. Mind yourself.

Future

If I am really honest, I feel like it’s really only starting to really affect me now that Ciaran is starting to get better so I will be going to therapy because I think it’s important to process everything. I get extremely anxious about him getting sick again or if I think too far into the future I freak out.

Our lives have totally changed and they will never be the same again but we are taking what we have been given with two very big open grateful hands and ready to continue our happy ever after”.

You can follow Denise’s journey and her Insta ‘therapy’ here. She and her husband Ciaran, who is now in recovery, had set up The Head Plan, a guided wellness and personal development program and productivity journal.

This article was originally published October 2019