Jules Fielding

Jules was diagnosed with chronic myeloid leukaemia on Valentine’s Day 2020. A year on from her diagnosis, she shares her story.

So, I have been diagnosed with chronic myeloid leukaemia (CML).

Prior to diagnosis, I was suffering with fatigue, I’d get bruising and aching pains, but I put this down to being a single mum, working and running around like a headless chicken half the time; I don’t drive, and I’d be running around daily. I then experienced a long period (I had a coil fitted and usually only spotted very infrequently). This went on for six weeks, and it was this that prompted me to actually go to the GP around April/May 2019.

My GP sent me for bloods, which came back showing a high white blood cell count, so we repeated the bloods as this could indicate an infection, but these also came back high. I believe this was done another time and then I was referred for a smear and gynaecological appointment.

I remember sitting in work, panicking thinking they were going to tell me I had cervical cancer. Once this came back negative, I felt such relief that it wasn’t anything scary. I was then referred to a Rapid Diagnosis Centre in Neath Port Talbot Hospital, where I underwent a CT scan and more bloods were taken. The CT scan didn’t show anything out of the ordinary, but my white blood cell count was still high, so I was referred back to my GP. She then arranged for me to meet with a haematology consultant in January 2020.

I remember going to meet the consultant from work, on my own, not expecting very much. She sat me down and said she’d reviewed my case, and that it did indicate that we could be looking at leukaemia, specifically CML, but fingers crossed that it was just a blip. She sent me for more bloods to be sent off to Cardiff for a more in-depth analysis and an appointment was made for me to go back to the haematology department on Valentine’s Day 2020.

The next four weeks leading up to my appointment were the scariest four weeks of my life. I tried not to google anything, as most of the time worst case scenarios were top of the list, and I was scared enough without reading the worst of the worst.

My appointment day came. The appointment was at 9am, and I was so happy I didn’t have to wait around all day. My son was in school, and my sister and brother were at my side. I was called in quickly and the consultant, a man this time, sat me down and confirmed that I did indeed have CML; he said my numbers were fairly good and that the prognosis for people at my stage was very good.

I asked him about a bone marrow transplant and was very anxious to get the cancer out of me, but I’m not a candidate and was instead told I would start tyrosine kinase inhibitors (TKIs), an oral form of chemo but much kinder on normal cells in the body.

I started my treatment during lockdown and have been shielding pretty much since the start. I’ve suffered some side effects from the treatment, such as further fatigue, aches and pains and even had a painful bout of gout in my knee. But I try and liken my treatment to that of a diabetic—I have to take my ‘insulin’ in order to stay well.

Today is my first cancerversary and I’ve learned that I’m much stronger than I thought I could be. I’ve reached out to support groups when I’ve needed to, and even though I haven’t been able to get that support face to face because of the pandemic, I do know where to go, if I need answers.

We hear a lot about different cancers, and what to look out for. Spotting the early signs and getting an early diagnosis can make so much difference to people’s lives. Not many people know the warning signs for leukaemia; I was lucky, and feel positive about my future and seeing my son grow up, but there are many who catch it too late. There needs to be more information and awareness out there.

Money and benefits

A cancer diagnosis can affect many aspects of your life including your finances, working arrangements and travel. This section will help provide information and advice on the practical issues you may need to consider after diagnosis and during treatment.

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