Naa Yeye was only 18 when she was diagnosed with blood cancer. 15 years later, she’s still dealing with long-term side effects, while also looking to share her story to help people from black, Asian and minority ethnic backgrounds not feel alone while going through cancer and a stem cell transplant. She spoke to Caroline in the Anthony Nolan Patient Services team about her experience.
You were first diagnosed with leukaemia when you were 18. Can you tell me a bit about this time?
It all started when I noticed I had some lumps underneath my armpit and some bruising. I went to my GP several times, but they thought I’d been bitten or that I’d hit my leg. I don’t live far from the surgery, but it took me so long just to walk there as I was in so much pain.
Then, on the 27 December 2003, I was in the shower and collapsed. My brother, Duncan, picked me up and drove me to the hospital - I didn’t leave again for a long time. The doctor sent me for blood tests and when my results came back, my first thought was ‘oh no, I’m going to lose my hair.’
I was diagnosed with acute lymphoblastic leukaemia (ALL) and was in hospital for about eight months. I started chemo soon after I was admitted and I had radiotherapy as well with no option of freezing my eggs. I was then told a stem cell transplant was my best option.
Your brother was your donor – how did it feel knowing that he could potentially save your life?
I wasn’t surprised that it was him! I have five brothers and sisters, but it ended up being my elder brother Duncan. We look the most alike!
I had a feeling that it would be one of them. Back then I think I was a bit naïve as I was only 18, and just wanted to get it over with. Duncan and I were very close when I was younger. I was extremely happy that he was my match, but I think he was in denial about what was happening. He doesn’t really talk about me being ill. We only talk about him being a donor.
Once you got home, what did you do to help with your physical recovery?
I was transferred to Hammersmith Hospital and had my transplant at the end of July 2004. I was then in isolation for a couple of months. I was given exercises to do and I would go to the gym with my brother, David, who was a personal trainer at the time. I went swimming often and had to go to a physiotherapist as well.
Before my transplant when I was in hospital, I was bed bound and had to learn how to walk and eat and breathe again on my own, as I had been on a ventilator when I ended up in ICU. I didn’t realise how hard it was going to be just to learn to sit in a chair. My mind knew how but my body wouldn’t register it.
I couldn’t taste anything – everything tasted metallic and I gained so much water weight that I couldn’t sleep properly. I experienced hallucinations at one point – I thought my sister, Antoinette, was Janet Jackson and my nurse was Peter Andre! Gradually though, my strength came back. The first time I realised my taste buds were back was when I had a kebab – it was a great feeling!
It must have been a very emotional time. Were you offered any psychological support?
I was offered psychological support but I didn’t think it worked for me at the time. I wasn’t sleeping, which didn’t help, and I was in a lot of pain. I did end up feeling very low and was suicidal at one point. My first experience of therapy wasn’t great – I just don’t think I was in the right mood for it at that point. I didn’t really open up at that age – I spoke to my family and friends instead.
My hospital staff were amazing. The majority of them seemed like family. At West Middlesex Hospital I was the youngest person there and they called me the baby of the ward.
During your recovery, you experienced a number of side-effects, including GvHD (graft versus host disease) of the mouth. [This is where your mouth may become sore and dry because you aren’t producing enough saliva. This may lead to ulcers forming and can make your food taste unusual.] How did you manage this in particular?
It was horrible, and it felt worse as it was a physical issue that everyone could see. To this day, my lips are still healing, so I’m still going through it now. Initially I was told it would take six months, but mine has taken so much longer.
I took a lot of tablets and I had milkshake supplements to drink that helped me with my nutrients and muscle mass. I also went to St Thomas’ every two weeks for infusions where they cleaned my cells, shone a light on them and then put them back into me [extracorporeal photopheresis]. This was to help heal the GvHD faster.
Do you still live with any long-term effects?
My lips have been the most affected – I don’t feel any pain, but it has had a massive effect on them. People stare, but they don’t understand what I’ve been through.
My eyes water all the time. Fatigue still gets to me sometimes. It’s extremely hard when you’ve been ill for so long and you’re trying to keep up a routine. The transplant caused me to develop osteoporosis in my knees because I was on high dose steroids for a very long time and radiotherapy didn’t help either. In order to stay awake and keep active, I go for walks.
Through all of this, what has helped to keep your spirits up?
My family and friends have been a huge factor and in hospital I made friends with everyone. My healthcare assistant, Angela, helped me through my lowest days when my family weren’t around. When I started walking again with a stroller, I used to sit with people and just talk with them. I love music and I really like old-school garage, so I used to play that out very loud. The nurses would come in and they’d all dance – we had good times.
What advice would you give to anyone who is still living with side-effects years after their transplant?
Try and find a good support system if you can access one. If you don’t have family, there are people out there and people online who can help you. When I was having my transplant there wasn’t as much support out there as there is now – there was no YouTube or the range of online resources.
Go to physio – this is very important. I was young and naïve so could have been more committed to this. Never lose hope because there is light at the end of the tunnel. I’m walking proof of this. If you have psychological support in place and someone you can talk to outside of your family, they could end up becoming your best friend.
Remember what you went through was never your fault. You’ve got this! Never give up. You’ve been through the worst…now let’s show cancer who’s boss!
You’ll soon be setting up your own YouTube channel. What’s been your motivation for this and what would you like to achieve by running it?
As a black woman, to find anyone who is BAME [black, Asian or ethnic minority] talking about leukaemia online is quite difficult. No one is, so I just thought maybe I’ll be the voice. I just want people to know that there is someone out there and they’re not alone.
Back then I had family and friends around me, but I didn’t have anyone who was like me and going through it. It’s just to try and help everyone really, not just BAME people. My disabilities don’t hold me back – I like to think of them as ‘extra spice’.
Your 15-year transplant anniversary is coming up at the end of July. How does that feel and how is your life now, given everything you’ve been through?
Five years was amazing, ten years was even more of a relief, but I wanted to get to 15 years. So many people want to celebrate with me. I’m hopefully going on a spa weekend for some relaxation and possibly a few days in Spain. Because my birthday is the next day as well, it’s good timing! I turn 34 but I also turn 15, and that’s a really special feeling.
If you or someone you know is going through a stem cell transplant or dealing with long-term effects, the Anthony Nolan Patient Services Team is here to support you. Find out more at anthonynolan.org/patients