Nicky (48) lives in Co. Antrim with her two children, Ellison (17) and Ethan (12). In 2022, Nicky was diagnosed with cardiac amyloidosis & multiple myeloma. On Monday 29^th September, Nicky braved the chop, cutting her hair in preparation for her stem cell transplant on the 7th of October. Nicky is sharing her family’s story to raise vital funds in support of our services.

I’m a Brand Master Educator for Revlon, visiting salons that use our products and teaching the stylists how to use the products correctly, including colour techniques. I grew up in West London, in Twickenham, near the rugby ground. I moved to Northern Ireland in 2004 with my job and have been here ever since.

I had a very busy work life, did a lot of travelling, and juggled that with raising a family and setting up a home here. It was challenging at times, but we found a balance. I’m employed from London and cover the whole of the north of England as well as Northern Ireland for my job, so I’m frequently back and forth. Our head office is in Camden, so I was over there regularly, every couple of weeks really, until my diagnosis.

It all started very slowly, little things happening here and there. Right at the very beginning of COVID, when everything was tightly locked down, I noticed that my legs were very swollen. I had also been experiencing extreme tiredness.

We had a great summer that year, so I put it down to the heat and the fact that I wasn’t doing my usual daily activities during lockdown. I would’ve been very active and into the gym. As time went on and the daily walks were introduced, I noticed I was struggling with my breathing. My body just wasn’t cooperating. It felt like it was shutting down, constantly cramping. I knew something wasn’t right. The symptoms slowly built up. The breathlessness got worse. This is when I visited my GP. I began connecting the dots between the swelling and the breathing issues and thought it might be something to do with my heart.

The GP suggested menopause or possibly fibromyalgia. I questioned this, as breathing issues and heart symptoms aren’t typical of those conditions. It got to the stage where I couldn’t even lie down at night. I had to sleep on my side, curled up, because I just couldn’t catch my breath.

Now two years post-lockdown, I had very high iron levels. I pushed for the GP to test me for haemochromatosis, an inherited condition where iron levels in the body slowly build up over many years. It sounds terrible to say, but I was thankful when the test came back positive. I had both genes, and that meant I finally got a referral to a gastroenterologist in Belfast. He told me straight away something wasn’t right, and he spent a further eight months collaborating with a cardiologist and a neurologist, piecing everything together. My speech became impacted, and they explored the possibility I had motor neurone disease. I couldn’t walk. My body was just shutting down.

It was my cardiologist who tested me for Bence Jones proteins and in the process discovered multiple myeloma. He also found a very rare disease called cardiac amyloidosis. It had completely hardened my heart. Cardiac amyloidosis is classed as a cancer because it’s treated in the same way, with chemotherapy and stem cell transplants.

He saved my life, my heart had become so hardened that getting treatment was crucial.

Hearing the word cancer didn’t scare me, I was relieved. At least we knew what we were dealing with and we could start treatment. The hardest part was experiencing the symptoms with no explanation. I had constantly questioned myself. Is it me? Am I imagining this? People tell you you’re fine, and you begin to wonder if you’re making it all up.

Cardiac amyloidosis is very rare. Had I only had the multiple myeloma diagnosis, they probably would have found it sooner. But because there were so many other things going on, it got bypassed. Everything else masked it. It took until 2022 to finally get a diagnosis, 3 years after my first symptoms in 2019.

My kids had to grow up very quickly.

All of this happened during lockdown and during the transition back to a sense of normality. Missing school, not seeing friends, homeschooling, all while watching their mum’s health deteriorate in a way none of us understood at the time.

I was struggling. I spent so much of my life travelling for work, I was used to juggling everything, and suddenly, I couldn’t do any of it. I couldn’t stay awake long enough to help with homeschooling. I couldn’t cook. We didn’t have proper access to GPs either, everything was done over the phone. It was incredibly difficult.

The Royal Free Hospital in London govern my treatment because of the rare nature of the condition. There are only six centres in the world that specialise in amyloidosis. They oversee everything, and Antrim Area Hospital here in Northern Ireland liaises with them, especially when it comes to changing medications or responding to new developments. The London team has more authority, but I now receive my monthly treatment locally.

Cancer Fund for Children were incredible. Karen, our Cancer Support Specialist, got in touch, came out to speak with me, and then arranged a time to speak with the children. We went from there, based on what the kids felt comfortable with. At first, because everything was so vague due to the rarity of the condition, Ellison and Ethan didn’t fully grasp what was happening, but I was very honest with them.

We had continuous support from Karen in those early stages. We also had a couple of family trips to Daisy Lodge, where their dad came along too. Then the opportunity came up for the children to take part in groupwork. Ellison, being older, was happy to go. Ethan was hesitant, he worried about leaving me. We did some group activities with the people Ellison had met on her residential, and Ethan came along. That’s when he got into it. I spoke to Paul, another Cancer Support Specialist, at one of the Belfast Giants ice hockey events. He said he would get something sorted for Ethan to attend a residential, and he did exactly that.

Ethan had struggled during group presentations and when talking about family experiences. He got very emotional. Karen and Paul suggested he might benefit from individual support. Ethan had built a great rapport with Paul during the residential, and Karen felt Paul would be the best fit for Ethan. As much as Ethan loves Karen and the team, he came back from the residential and said to me:

“Mum, Paul’s the only person that gets me.”

That broke my heart. It made me so emotional because you’re trying to be strong, trying to put on a brave front. I unfortunately don’t have that moment of finality to look forward to. For me, there isn’t a cure for either of the conditions I have. There’s no end point. No bell to ring. I don’t get that sense of closure, and neither do my children. Ethan put on a brave face, but I knew it was affecting him deeply. And when he said that to me, it hit me just how much of an impact it was having on him.

Ethan still meets with Paul for individual support. We’ve been mindful about spacing out their sessions, knowing my transplant is coming up. I knew Ethan was going to need Paul. Ethan absolutely adores Paul. Paul has a way of connecting with Ethan that allows him to open up completely. I know I can go to London for a month for my transplant and that Ethan has Paul. Ellison also has a beautiful connection with Paul from her residential, and he said, “If Ellison ever needs me, I’m there too.” And I know he means it, he’s that kind of person.

Having Paul and Karen in our lives has changed everything.

The Health & Wellbeing breaks at Daisy Lodge are brilliant. To get that time just for myself, to reflect, especially as I was waiting for news about my transplant. I’d been turned down four times, so those breaks helped me through some tough moments. They offered so many different therapies and activities. I didn’t realise how much I’d benefit from creative sessions, art, movement, mindfulness. It made such a difference. I now do meditation every evening. The first time we went to Daisy Lodge as a family was at Christmas, and it was amazing. Then the second time, it was snowing, we got the full, proper winter experience. And when we went back again, it was summer. It was just the best time.

Ethan has just recently joined the Youth Engagement Group. If you ask Paul, this was a boy who was very emotional and didn’t share easily unless he felt safe. But now, with the support of the whole team and especially Paul, he’s stepping into a role where he can be a young voice for others. That’s massive for me. He’s really come out of himself and loves going to see everyone. Joanna and Claire, who I’ve just met recently, are just wonderful.

I recently spent a few days in London around my pre-transplant tests on the 30th of September. On the 29^th, just the day before, Revlon hosted a local hair event at their head offices, right next to the hospital. My manager said, “Let’s do it. You’re going to be the model.” We planned a couple of transitional looks. They coloured my hair in funky shades and the event was promoted across Revlon’s platforms. We did a short bob festival look, bleached it up, and used some beautiful pastel shades before finally cutting it into a short pixie style, ready for my stem cell transplant on the 7th of October. For me, it was about having time to adjust to short hair. I’m in control, I’m going to own it. It was a lovely way to spread the word and turn something difficult into something positive. So much good has come from this diagnosis, from having Cancer Fund for Children in our lives, to meeting others who’ve had the same experience.

I didn’t have a fundraising target in mind, I just wanted to raise as much as I could and spread the word about this incredible charity. Cancer Fund for Children has made this journey so much easier. Every single person has been so kind. There’s no one else like Cancer Fund for Children, and this event was all about giving back to the people who’ve stood beside us through it all.

Nicky’s fundraising efforts have raised £1,800 and counting, vital funds that will allow us to be there for more families like hers. 

Help us be there for more families like Nicky’s by making a donation today!