A shock diagnosis
When I was diagnosed with blood cancer it was a massive shock - I had none of the typical symptoms, and I was lucky that it got picked up when I went for a routine blood test. I was with my husband and my best friend when the consultant told me, ‘You've got leukaemia’.
When you hear those words, your world just stops. My husband actually asked, ‘if Emma hadn't had her blood test done that day, what would have happened?’ and she looked at me and said, ‘you wouldn't be having this conversation, you would have been so ill your whole body would have shut down and you would not have been well enough for chemo or a transplant.’ I just couldn’t compute how I could have been so ill.
It's a rollercoaster, not a journey
She said I would need four months of chemo and then a stem cell transplant. I had no chance to stop and think. I didn't have any choice really, but it was kind of the best way. I just had to get on with it. I didn't really have time to think about anything until I got home after my transplant, because I was just in survival mode.
Between February and July, I had all my chemo, and they found me a donor, a 12 out of 12 match. Because my mutation was genetic, it had to be a non-related donor, and Anthony Nolan found me a perfect match - I still get emotional talking about it. Every time I think about my donor, I just think, ‘oh my God, you are my hero’. He's given me my life back.
I went in for my transplant at the beginning of July, and I didn't come home until the middle of September. The stem cell transplant itself was fabulous and we had a little party, but recovery was really hard. I don't call it a journey, I call it a rollercoaster. I can get to the top and then I can fall. There'll be days when you do just think, ‘I want to give up’. I’d like to see more support for the mental health side.
Five things that helped me
It’s important to say that this is only my story. This doesn't mean this is going to be everyone's story, but this is how I've experienced it and what helped me.
1. A positive mindset
I decided from the start that I would stay positive, and I honestly believe that helped. I know that the transplant and the chemo and all the meds and everything have kept me alive, but I strongly believe the attitude that I took from that day I was diagnosed has helped me immensely. Don't get me wrong, there have been some very, very dark days but whatever was going on, I always tried to flip it to focus on the positive. I had a lot of tools and that helped me a lot and I also had some therapy after I got home.
So, try as hard as you can to stay as positive as you can, even when you feel that there's nothing to be positive about. Once you've been diagnosed with cancer, it's always in your mind, but I can't live on fear. I cannot live on ‘what if’. It's about finding the things you can control. Most of the time, I have control of what I choose to focus on and what helps me feel positive.
2. One day at a time
I told my medical team, ‘I only need to know what I need to know today, because if you're going to sit here and tell me what two years, three years look like, I can't compute with that.’
Now that I’m recovering, I have the same approach. I often think, ‘I'm putting that in a box, and I'll deal with it when I need to deal with it’. I try not to make long-term plans, or if I do book anything, I'd make sure it can be changed or cancelled. So have things to look forward to, but always think, okay, if it doesn't happen, it doesn't happen.
It’s very frightening coming home at first, because you've become so institutionalised in your hospital world. Things like working out your medication, because it's been given to you every single day for the last year and all of a sudden you're having to sit there and work it all out. I’m still on a lot of meds and now it's just about second nature. Things that you were so frightened of just become like, ‘okay, I can do this’. That’s why I wanted to share my story, to give people that hope. So, my biggest piece of advice would be to take things one day at a time.
Don’t put too much pressure on yourself. When I first came home, I couldn't get out of bed. It was awful. Then I decided that upstairs was for sleeping and downstairs was for ‘living’. So, I made that decision very early on, however rubbish I felt, I'd get up and come downstairs, and even if I stayed on the sofa all day, it didn't matter. And appreciate the little things, celebrate the small wins just as much as the big wins. I've only just started going public transport again, and you just think, oh my God, all those things that you took for granted before now feel huge. When you've had to rely on hospital transport for over a year and you’re waiting around for hours, it feels good to get back a bit of your independence.
3. Being honest with the people around me
I was very open with my friends right from the beginning, I told them ‘I don't want you changing the way you speak to me. If you've gone to the hairdresser and they've screwed your hair up, don't think to yourself, I can't say that to Emma because she's sitting there bald’. I was really clear because I didn't want to and I still don't want to be treated like - I call it the ‘head to the side’ you know? and they go, ‘oh dear’. It doesn't help me and doesn't help them. I want to hear about my friends' lives. I don't want anything hidden.
There’s also a misconception that once you’ve had your transplant, you’re fine. When you're in hospital, it's awful and then when you're out, they think you must be okay now, but you're not. There’s the fatigue, the GvHD. The aftereffects of a stem cell transplant are beyond anything I expected. And’ it’s not just the physical but there’s so much going on inside my mind. So, I’m very honest with my friends.
Another big thing is the language around cancer. People say, ‘Ask me if you need any help’. Well, I’m not going to ask, just do it. Just turn up with food for David so he doesn't have to cook tonight. It all comes from a good place, I know that, but when someone says, ‘you'll be fine’ - I hated that. I’ve met other people on this rollercoaster and I just say, ‘I'm not going to say you’ll be fine, because I don't know that. What I can say to you is that whatever happens, I'm here for you’.
4. Not comparing myself
One of the biggest things that helped my mental health was to stop comparing myself with people who had transplants at the same time as me. I've made a few very good friends - I call it the bald club - and someone I was in hospital with, is now back at work full time but then, unfortunately, someone else died. So, you can’t compare yourself to anyone else’s story.
5. Using my second chance to help others
I’m 58 now and it feels like I've been given a second chance. I'm still having treatment for GvHD and I'm still on a lot of medication, but I feel that cancer has given me more than it's taken away. I don't know if that might sound ridiculous, but it has. It slowed me down. I know I’ve got the most amazing family and friends. My husband and I have been married 32 years - we had a reset. I don’t take things for granted.
One of the therapists said something that's really stuck with me: I can choose what parts of pre-cancer me I bring with me. And that's a really good way to look at it. That craziness of working - I used to get up at three or four in the morning. All those things I've left behind. I don't want that life. I've chosen to stop working at the moment and I'm doing things that I want to do. I've done a few bits for Anthony Nolan and Leukaemia Care, because I want to feel like I've got a purpose. That's one of the hardest things – feeling like you’ve lost your purpose. I do quite a lot on social media too. Even if it's just one person that I help, that's worth it.
I also want to raise awareness of the stem cell register. For me, the smaller charities, like Anthony Nolan, they don't get enough publicity and people don't realise that people can save other people's lives because of this charity. I have this vision that I would go to every single university in this country and stand up and tell my story. I want to tell people that it could be your mother, your grandmother, your sister, your wife, and I am here because someone very young, in America, has done the most selfless act in the world.