At the age of just 26, Ailis was diagnosed with Hodgkin Lymphoma. Eight years on, she looks back at her experiences of stem cell transplant and recovery – and talks about her amazing upcoming challenge, taking on the Great North Run and British Transplant Games for Anthony Nolan.
I was diagnosed with Hodgkin Lymphoma in 2008 – I was just 26 at the time.
Honestly, I’d never heard of the condition. But I had all the symptoms: itching, tiredness, colds. I thought there was no way they were connected. I’d just been busy, so I didn’t think anything of it.
But then I had a swelling in my neck. I thought, ‘This shouldn’t be here.’
So I went to my GP, for the first time in years – the doctor didn’t even know me. I soon made up for that!
My lymphoma treatment
After my diagnosis, I underwent six months of ABVD chemotherapy. It was rough going, but I got through that, and went into remission in July 2009. I put it all behind me, and picked up where I left off.
But then in February 2012, I relapsed – but with completely different symptoms, which threw me. My blood counts were totally fine. I had a pain in my arm, but that was it! No swelling at all. It was baffling.
My original treatment plan was to have 5 or 6 weeks of chemotherapy, followed by an autologous transplant, using my own cells. But unfortunately after 12 weeks of treatment, the lymphoma still hadn’t responded to two different chemotherapy regimens (GEM-P and ICE), and the original plan wasn’t an option anymore, so my medical team had to come up with a different approach.
They started looking at allogeneic transplants, but in the meantime, they recommended a new drug called Brentuximab Vedotin – however, it wasn’t available on the NHS to patients in Northern Ireland back then, due to the lack of a cancer drugs fund.
As a result, I had to go to the health ministry and lobby the politicians to get me the treatment I needed. Eventually, they granted me funding for the drug, which went on to work wonders for me as it successfully pushed the lymphoma cells back – finally!
My stem cell transplant
Finally, I’d reached the point where I could have a stem cell transplant.
My main concern was – where would they get a donor from?
Luckily, I’m the youngest of seven, and my sister was a match for me. So I had a donor, and things were looking good again. The staff were great; they kept putting options on the table, explaining everything to me, and keeping me determined and focused.
I went into hospital for my stem cell transplant at Halloween. Thankfully, the procedure was really straightforward and I was home in time for Christmas.
Through 2013, I took it all slow and steady – I just wanted to get to the one-year milestone.
But my one year post-transplant scan showed that against all odds, there was a slight return of the disease. I just thought, ‘Oh, God, what do I do now?’
I had a donor lymphocyte infusion which resulted in oral GvHD. This was difficult to deal with, as I wasn’t able to eat due to the ulcers in my mouth. But looking back , it was a blessing in disguise, as it shook everything up internally and showed the cancer cells who was the real boss once and for all!
And by May 2014, finally, I was in remission again. It was just thrilling, after all of the ups and downs. Just brilliant.
The British Transplant Games, the Great North Run, and my fitness
Before my illness, I had no grounding in physical activity; the idea of me running would’ve been ridiculous! But after the transplant, I knew it was important to build myself up physically.
That might seem counter-intuitive. You’re thinking, ‘My body’s been through so much, why put it through more?’ But it’s been brilliant for me: clearing my mind, re-establishing my physical strength.
When I first came out of isolation, I could barely walk down the corridor. But I joined a local fitness group for people post-cancer, and that took away the fear of going out to the gym.
And after a while, I started walking, and then I gradually began running – and then I joined a running club, as well. It was a complete sea-change in my life.
Ever since my recovery, I’d been looking at the British Transplant Games, wondering how to get involved. In 2015, I took part for the first time – and then went back again this year in 2016.
I took on the 5km Time Trial cycle, the 10km Road-Race cycle, the 3km walk, and the 3km mini-marathon – and came away with one silver and one bronze medal!
Taking part really helped to give me a completely new lease of life; I’m determined to keep myself as healthy as I am. It’s been just brilliant for me to build my strength back up – to do things I never thought I could do. And without my cancer experiences, I just wouldn’t have ever got involved.
I’d highly recommend any stem cell transplant recipients to get involved in the British Transplant Games, as it’s a really positive and uplifting experience to be part of. There are a wide range of activities to suit everyone, so please don’t be put off if you haven’t high levels of fitness – just join in, have fun and celebrate the gift of life.
In fact, the British Transplant Games were a catalyst for a lot of things. I’m now about to take on the Great North Run, as well! I don’t know what my finishing time is going to be, but running for Anthony Nolan is going to be one of my proudest moments.
I know how difficult a stem cell transplant is, and not everyone has the luxury I did of having a match in my family – that’s why it’s so important to me and my friends.
It’s a chance to remember the people I met along the way who weren’t so lucky, and I’ll be thinking of them.
What would I say to someone going through a transplant? Just give yourself time. When you first come out of isolation, you just want to get yourself back out into the world as soon as possible – that was the mistake I made when I first went into remission, and it had a really negative impact on my health.
The second time around, I took it slow and didn’t put myself at risk.
It’s also important to educate the people around you. After a few months, you’ll probably still be feeling the effects of your transplant, but they won’t be as visible to your friends and family, since you’re no longer in hospital.
But actually, it’s only really in the aftermath that you put all of the pieces together. The whole world thinks you’ve recovered, but you’re still digesting it all. It can be frustrating – you want to be better – but you just can’t rush.
And just keep going. You can get your life back. It will be different, but you can still achieve so much – you can do things you never thought you could!
Never give up hope. You can get there.