Katie is 28 and had a transplant to treat her acute lymphoblastic leukaemia (ALL) in 2014. She talked to us about how her hobbies – including photography, video-blogging, mindful colouring and general creativity – have helped her during her transplant and recovery.
What was the lead-up to your transplant?
I was first diagnosed with ALL back in 2010; I had chemotherapy for two or three years and got into remission.
At the time, my friend Matt had moved to Australia, so I thought I’d go and see him and do a bit of travelling. I had a really great time and got to see Sydney, and it gave me a bit of a break – I was healthy and well for over a year.
I had a job in the university in Sydney, and it was about 30 minutes’ walk to work. But I found I was getting more and more tired; the walk was too much, so I started getting the bus.
I thought I was just getting lazy, but then even the bus was a struggle and I thought, ‘Something isn’t right here.’ I had bruises and this was a different kind of tired. So I went for a blood test. They said my platelets had dropped and sent me straight to A&E.
I knew what to expect as I had been through it all before. Luckily I had my best mate there and some new friends I’d made in Australia came to support me. They brought my suitcase to the hospital – I said, ‘I’ll need one with wheels, I’m too weak to carry it!’
The doctors offered to treat me there in Australia, but I said, ‘I need to go home and get back to the Royal Marsden.’
Other than stopping to have a meal with my family, I pretty much went straight from Gatwick Airport to the hospital. I had somehow managed to pick up two chest infections en route! By June 2014 I’d had the transplant.
What was your experience of having the transplant?
Unfortunately I spent quite a few weeks in hospital beforehand, because of the double chest infections; they were really hard to shift.
I had to have treatment from a nebuliser and no one was allowed in the room. The nebuliser actually made me start hallucinating; apparently this side effect only happens to something like 1 in 1000 people, but I got it! It was like watching a projection of the Windows old-school screensaver – it wasn’t scary, it just meant I couldn’t sleep because I had all these images in my mind when I shut my eyes. Once I was off the nebuliser that stopped, though.
The transplant and treatment beforehand were like nothing I’ve ever experienced before, even with the two to three years of chemo I’d undergone previously. I couldn’t eat because my throat was so sore; I had to be fed through a bag. Once I got over that, I just wanted to get out and go home. And as I’d spent extra time in hospital because of the chest infection, it was mentally quite hard.
Luckily, I had the support of my partner at the time and my family. My mum came and stocked up my fridge with food and delicious drinks like coconut water. My dad came every day, which drove me batty! He just sat there when I wanted to go to sleep, so he got the brunt of most of my moods!
But looking back, I am so appreciative of him, and my whole family are really good – I am lucky. My friends tried to come when they could, but a lot of them don’t drive, so getting to Sutton was a bit of a mission.
It sounds like the support of your friends is really important to you.
Yeah, it was great that a lot of them would come to see me, but at times I was so low and tired I didn’t want them to see me like that. You feel like you have to put on a bit of a show, but I just wanted to sleep.
I did speak to a lady from the counselling service, and she was really nice. But I only spoke to her once, as my mentality is that if I have a bad day, the next day I’ll be alright. I just needed a bit of a pep talk.
What else helped you cope during your transplant and recovery?
It really helped me to try and break the time up when I was in hospital. I didn’t feel like doing much – I play a lot of computer games, and I took my PlayStation 3 in with me, but I found I just didn’t have the patience for it.
Instead I had lots of showers – two or three a day at one point! It broke the day up and it was a different room to be in. I also liked watching long films like the Lord of the Rings series. I recommend that – long films and box sets over short TV shows. It just slows everything down!
What else did you do?
I’ve had a video blog on YouTube since I was first diagnosed; it helps me look back at the different stages of my treatment and see my progress. I can post it on Facebook as well and get positive vibes back from my friends.
While I was in hospital it didn’t feel right for me to make new videos – I like to be positive and energetic in my films, and I just didn’t have the energy at the time. But just watching the previous three years’ worth of films on my laptop cheered me up.
Once I was out of hospital and going back for outpatient appointments, I started killing time in the waiting room and during blood transfusions by doing these relaxing or ‘mindful’ colouring books.
Colouring-in was just starting to get popular then, and I got my first book in a cheap craft shop for about £3. I thought, ‘I’m going to give that a go.’ Then I got obsessed.
I thought that doing colouring was better than just sitting and looking at the Internet on my phone. It felt like I was actually achieving something. And it also meant that people started talking to me.
I’m normally a really talkative person, but I wasn’t so chatty during this time because of what I was going through. But when I was colouring people would say ‘That’s really good, where’d you get that from?’ And it would start a conversation.
So does being creative help you?
I’ve always been creative, since I was a kid. My mum would come home to find I’d made something out of shoeboxes – that type of thing.
Being creative is my outlet, and it’s definitely helped me feel better. I’ve always got lots of projects on the go – I like Lego, Origami and before I got ill I even started making a BMX, but couldn’t finish it! My room looks like a bad Pinterest page. If I’m feeling rubbish, I make a video or build some Lego and it just releases something.
And you’re a fan of photography, too.
Yes! Taking photos, or making a film, editing, making thumbnails, putting it online – the whole process – it takes hours of time and it gives my brain a rest from thinking about stuff.
I really like taking pictures of people, capturing them in that moment of happiness – when they’re not posing. I also like walking around cities and taking photos of things that stand out. When I get back home, I can look back at all the quirky things I’ve seen.
Last year I got a grant from Anthony Nolan to buy some Adobe Photoshop software and to pay for some online courses. I use the software for editing my photos and thumbnails for my videos, and designing things for social media. The first course I did was in web design. I’m hoping to put these skills into developing my career in the future.
And you’re quite an active type of person?
Yes, I think it’s really important to give yourself goals. I’ve done lots of things that I thought I wouldn’t be able to do. Like trying to take on a 5k; at first I thought ‘I can’t do that’– but then I walked it, then I jogged it and my goal for next year is to run 5k.
I celebrated my two-year transplant anniversary literally last week by doing a Colour Run with my friend Zabrina in Sheffield. I didn’t actually run it, but I did the majority of the obstacles along the course. I also had my camera strapped to my hand and was filming it all the way!
Sometimes I think I’m not getting stronger and I’m not going fast enough, but I’m proud of that Colour Run. There was one tricky obstacle near the end – inflatable stairs with a rope to pull yourself up! I kept falling to the side, but I said to myself, ‘I’m definitely getting to the top.’ And I did!
Usually, other people see me but they can’t tell I’ve been unwell, or that I’ve been through what I’ve been through. But Zabrina knows.
And after I got to the top of that obstacle, I looked at her – and I could tell she was proud of me. She’s always there supporting me and pushing me and I’m so grateful for that.