Jules Fielding

Jules was 39 years old when she visited the GP due to having a long-lasting period, experiencing fatigue and unexplained bruising. Here she tells her Spot Leukaemia story and her journey to remission…

“I visited my GP as I had a period which lasted me six weeks; I had put it off, but I knew after the six weeks had gone by, I should have it investigated. Typically, once I had my appointment my period had stopped, so I’m glad I mentioned it to some work colleagues who encouraged me to go. I also felt rather fatigued and experienced some unexplained bruising, but I brushed it off as being a busy mum.

I was initially sent for a blood test which flagged my white blood cell count and my GP reran these a couple of times to ensure it wasn’t a fluke. I was then referred to the hospital’s gynaecology department to rule out ovarian cancer as this was the first concern.

Their tests weren’t showing anything apart from what my blood was already showing. I was referred to the rapid diagnosis centre, who couldn’t find anything specific, so I was referred back to my GP. Luckily, they didn’t stop there and she referred me to the haematology department at my local hospital. I attended an appointment at Morriston Hospital and went on my own just thinking more of nothing. She sat me down and told me that because of tests that were run previously they had ruled out everything other than chronic myeloid leukaemia (CML). I was to be sent for more blood tests, which would go off to Cardiff for analysis to confirm her suspected diagnosis.

I received my CML diagnosis on 14th February 2020; not the best Valentine’s Day I have had to date! The four weeks from meeting the consultant to receiving the news were the absolute worst. There were so many floating what-ifs in my head and doctor Google is a scary place. From this appointment, I was sent to have a bone marrow extraction so they could see how advanced the cancer was and what treatment would be needed. I was lucky and it was very early days.
When I was told CML was incurable, I got freaked out; it was liveable, but I had this thing, this illness they couldn’t cut out. I felt like I’d lost control of my life, my self and my foundation for living was crumbling beneath me. Then, the world turned upside down with COVID-19 and everything went into lockdown.

I started treatment on imatinib in late March. Thank goodness for the information pages on Leukaemia Care and Facebook CML groups, where I was able to find support and information from others who were further down the road than me. It surprised me how many other women in the group also experienced changes in their menstrual cycles.

I have found treatment very hard; I have gained weight, my mobility has suffered greatly and my weakened immune system means I pick up a lot of bugs. But, I decided to do everything I could to work through it. I meditate, do gentle exercise when I can and I have converted to a full vegan diet. I try to keep the most positive mindset I possibly can. There were days when I would feel sorry for myself and think, ‘Why me?’. But then I would tell myself that I would take this on 100 times over if it meant if was my battle and not that of a loved one. This line of thinking helped me through the hard times.

On 28th May 2022, I received a call from my consultant to say my latest bloods had come back undetectable! I have to continue treatment, as there is a risk of it coming back without it. I still have to deal with the side effects, but the sword of Damocles is no longer perched above my head. I intend to do what I can when I can. Don’t give up on opportunities and put things off. My new mantra is, “Just buy the ticket!”. You have to live for today. I celebrated my remission status by taking a cruise this summer (and to make up for having my 40th during the lockdown!).”

Knowing the signs and symptoms of leukaemia is so important. Many women my age have put down a change in their periods to early menopause or ignore it altogether and carry on, but early detection is invaluable to people’s lives.”

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

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Welfare benefits

We talk you through state benefits, eligibility and more. It's important to note that the purpose of this webpage is to give an overview of the benefits that may be relevant to you as a leukaemia patient. Speak to our Advocacy team for guidance on personal claims.

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