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Diagnosed with Crohn’s disease in 2011, Emma Richards was no stranger to hospital appointments. So when the nurses looking after her became increasingly worried about her blood results, she assumed it was linked to Crohn’s. But following an appointment with a haematologist, in January 2013, at the age of 33, Emma was diagnosed with chronic myeloid leukaemia (CML).
In a state of shock, the week following her diagnosis saw Emma undertake numerous blood tests and sign up to trials of the drug imatinib – the ‘golden bullet’ drug that has been revolutionary in the treatment of CML.
Now, two years on, Emma continues with her treatment and has, with the ongoing support of her family and Leukaemia Care, learned to live with both chronic conditions.
Discussing her journey and the support provided by Leukaemia Care, Emma says:
“Being diagnosed with Leukaemia is very scary! Not just for me, but for my family as well. I have a husband and two children and I come from a relatively large family of seven girls.
“My family’s support has been fantastic and the support from Leukaemia Care has been crucial to helping us to deal with my diagnosis and ongoing condition.
“I now call the Care Line whenever I have any questions or need some advice. It’s great – the information and advice is always very honest and specific to you. But I haven’t always done that.
“The internet is so readily available and it’s tempting for people to go online and try to self-diagnose by looking up their symptoms. Even though I was already in contact with the nurses providing treatment for the Crohn’s disease when I was diagnosed, I couldn’t resist looking on the internet. But I quickly realised it can be a very scary experience.
“You don’t always get a true reflection and the information you find can be quite generic. You can very easily add two and two together and come up with 45.
“It’s also important to remember that the standard treatment and procedures available here in the UK can be very different to other countries, so unless you are reading advice that is specific to the UK, it won’t necessarily be relevant.
“Speaking to someone means you can go through all your questions in detail and feel safe in the knowledge that you are getting the right answers. It helps to put your mind at ease. The situation is stressful enough without worrying about incorrect information!”
It isn’t just Emma herself who found calling Leukaemia Care helpful. Her husband David, who Emma describes as her “rock”, also found some comfort in speaking to someone – both via the Care Line and at face to face events.
“My husband found talking to people who understood our situation really helpful. And it wasn’t just the Care Line – face to face contact at events organised by Leukaemia Care meant he could meet other patients and carers face to face.
“At one event that I had been speaking at, a man went up to David and commented that listening to me was just like listening to his wife. He spoke to David about how he had felt, to which David could instantly relate.
“For David, it was the knowledge that others were in a similar situation and seeing how they coped that helped the most.”
One of Emma’s sisters also contacted Leukaemia Care for advice after feeling helpless following the initial diagnosis:
“My sister Jenny felt that she needed to help in some way, but she didn’t know how, so she called the Care Line for advice. The advisor helped her to turn her feelings into action by signposting fundraising activities as a way she could help to make a difference.
“In 2013 Jenny did a skydive for Leukaemia Care, raising £1,500, and since then a team of us have done a wing walk to raise further funds.
“Neither myself, David or Jenny would have found this level of support by looking for advice solely on the internet. Picking up the phone is much more personal – a screen can’t give you comfort.”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Fatigue
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
Early diagnosis saves lives.donate
I was diagnosed with chronic myeloid leukaemia (CML) in 2013 at the age of 33. Since being diagnosed, I’ve tried to live life fairly normally; however, CML occasionally seems to tap me on the shoulder and remind me that it’s still here!
If I am going to be completely honest, I do not remember the last time I have woken up and felt completely recharged and refreshed; this is now my new normal, but there are days where, although being a completely self-confessed stubborn woman, I have to give in to my body and just stay in bed!
Being an extremely open-minded person, I believe allows me to hope and see the positive in most things. Some of my friends and family believe me to be, in their words, ‘the strongest woman’ they know, ‘inspirational’ or, as my husband says, ’The Iron Lady’. In all honesty, as much as I appreciate the positive view they have of me, I also feel I had no choice but to be strong. I am after all a mother, a wife, the oldest sister, the daughter, the manager; I have people who rely on me, who I need to be strong for and to show that you can get past any obstacle that is thrown into your life’s path. Don’t get me wrong, I have days where I just need to sob (I mean, I’m crying now typing these words!) to ask those questions: ‘Why me?’, ‘What have I done to deserve this?’, even now, years from diagnosis in 2013. This is normal and I truly believe we need to ask these questions too.
I also feel the earlier the diagnosis, the better. I feel it gives people the time to understand and digest what is happening to them. Diagnosis, and what comes after, is a whirlwind in itself, so the later you are diagnosed means there may be more you have to deal with, and come to terms with, more quickly! For me, and I was diagnosed early-ish, but the first week was a complete blank. In and out of hospital daily, lots of tests, information, questions.
Don’t be afraid to contact your GP, tell them what you’re worried about and why you are worried. You will never be wasting their time. A GP is there to diagnose and support you when you are ill. They can get the ball rolling. Too many people are diagnosed due to an emergency, sometimes much later than if they had gone to the GP with the symptoms originally.
Unfortunately, not enough people are aware of the signs and symptoms of leukaemia, mainly because of the rarity and the fact that there are so many different types. The symptoms are similar to a lot of common illnesses, so people, and some health professionals, will mistake them for something else, and testing for leukaemia doesn’t even get onto the list!
In terms of my general health, I’m good! I keep myself fairly fit and healthy, in terms of diet, and exercise regularly. I find gentle exercise helps a little with boosting my energy. I still have the ongoing management of Crohn’s disease, and then in 2018 I had spinal surgery on my lower back, so there is now this to factor in too. With CML itself, I believe I was a slow responder, but I eventually hit the targets needed and maintained a good consistency with blood results.
I have been on imatinib 400mg daily since day one and the side effects of nausea and cramp – the two biggest issues I had with the medication – subsided and are managed really well. This has been a fantastic medication for me! In 2019, I started on a reduced dose of 200mg daily, with the plan being that for 12 months before trying treatment-free. I was so excited, although a little scared – who wouldn’t be? These drugs are keeping me alive! With this came the monthly blood tests again, which made me feel a lot more comfortable. Unfortunately for me, less than three months in, I had a phone call – I was told that the reduction wasn’t working for me and the CML levels in my blood had started to spike again. From here I was back on the daily dose of 400mg.
I was devastated; maybe I had been too optimistic on this occasion and set myself up for the heartbreak I felt, but I so wanted this to work! I was told my body ‘just couldn’t cope without the medication’. I have since had a word with myself, as I do, and I have realised that, if this is what I need to do to live, then this is what I will do.
Throughout, I have continued to work and kept myself busy with my hobbies of singing and acting. This is all part of my coping mechanism, and I have also found what I feel is my calling in life and the purpose of me having this blood cancer! I mean surely there has to be a positive to come out of it, right? I have been part of the Patient Panel at Leukaemia Care for some time and had the opportunity to speak at their conferences on several occasions. I am hoping that in the future I can engage with people and support them on their journey. I hope to support the progress of personalised care within our health and care services, using my own story, and if just one person can be helped or inspired by this, then I feel I will have made a positive start.
On diagnosis, and for some time after, I had the same haematologist and a named nurse I knew I could contact. When the wonderful man looking after me retired, I lost it all! Since then I have spoken to and seen different people, not all positive experiences, and I no longer have a named nurse. I do, however, have the email address of my haematologist’s secretary and she is fantastic at getting answers and responding to me. But I feel that the personalisation and consistency is lost.
Up until 2020, I feel that I have coped extremely well with my mental health. But, due to COVID-19, I have been shielding for the best part of a year. I work in Social Care, and it was very difficult to be able to work from home. So, in what seemed overnight, my whole life changed. Work stopped, socialising stopped, shopping stopped, hugs stopped, barely seeing my daughter, my hobbies stopped – all of it!
Fast forward to now, I’m not the same ‘just get on with it’ person. I’m too frightened to go shopping or mix with lots of people, but I am feeling a little braver with trying to get my life back to normal. I’m starting with the people I know and love, those that I know wouldn’t put me at risk, going on walks, sitting in their back gardens. I tried sitting at a coffee shop, the table outside and at the end, but after 10 minutes I was just too anxious; I didn’t know the people walking past me, what their hygiene was like – had they washed their hands? I know it probably sounds quite presumptuous – I even tell myself I’m being ‘daft’ – but this is the reality of what is going on my head!
This is very new territory for me; I am so used to being the one trying to support others with anxieties, I have no idea how to do it for myself. But I do remember being newly diagnosed and, although I have a lot of people and support around me, I felt cancer to be a lonely place. I remember thinking that no one truly understood what was going on in my head. I still believe that no one ever understands the truth inside your head, but that is the same reality for everyone! Over time, and with people you are comfortable to talk to, it gets easier to talk. For some people this will be family and friends, for others it will be reaching out to your doctors, nurses, Leukaemia Care, support lines, through social media. It’s not a one size fits all, so you find what fits you.
