Instagram blogger Jules Fielder was just 37 when she found a lump in her neck that was later diagnosed as incurable lung cancer. Now Jules is using her Instagram to raise awareness of the disease in a bid to urge others to check for the subtle signs of lung cancer.
“Remember remember the 5th of November has a whole new meaning for me as that was the date I was diagnosed with Stage 4 double lung adenocarcinoma cancer with an EGFR mutation.
My journey began when I was adjusting my necklace in the bathroom mirror and found a small lump at the base of my neck.”
My friends tried to reassure me that it was a raised lymph node, but I believe that anything abnormal on your body should be checked.
My fight to be diagnosed
“At the time I had to fight to be seen by a doctor, with the GP receptionist insisting on sending photos of the lump before I was finally referred to an ENT (ears, nose and throat specialist).
Following my appointment, I was sent for an ultrasound and then had a biopsy on the lump. This was the priority because I had been told I had lung cancer, but they couldn’t determine the type, which meant I was unable to start any treatment.
The next two weeks consisted of blood tests, MRI scans, chest x-rays, a heart echo test, a CT scan and PET scan.
After a lot of investigation, I was diagnosed with the incurable cancer and later discovered that the mutation had spread to my spine and pelvis.”
Life after my diagnosis
“I was shocked. Never in a million years at 37 did I think I would be called in to be told I had stage 4 lung cancer with EGFR mutation. Incurable for me was the hardest words to hear.
I felt stripped of my identity with all control being placed in the hands of my medical team. Of course, you soon build up a rapport with your team but still, I felt lost.”
What helped me take back control was learning about the EGFR mutation. It gave me strength and a better understanding, helping me to remain positive and to continue to live.
“I began treatment two weeks after my diagnosis starting with radiotherapy and I’m currently on targeted therapy, taking Osimertinib. The treatment helped to stabilise my non-small cell cancer and alleviate pain in my pelvis.
Having treatment options does help me stay positive but there are a lot of side effects to endure, which was hard to handle in the beginning.
I quickly found out that the side effects don’t all come at once. My first side effect was diarrhoea and constipation. Then came the skin rashes, ache and sickness. As of right now, I’m experiencing cracked and infected fingertips which is being controlled by antibiotics.
Mouth ulcers have also been a side effect and they suck, but the health team are always there to support and help you when they arise.”
Documenting my lung cancer
“When I was first diagnosed, support came in the buckets loads but it’s important to get the right support because not everyone knows what to say.
I took comfort in reading stories like my own on the Roy Castle Lung Cancer Foundation website and I also joined a support group for my mutation on Facebook, which made me feel more relatable.
I choose to document my journey on Instagram for several reasons. Firstly, blogging is a huge hobby of mine, so it came naturally and secondly, it was my way of taking control.
Sharing my journey and raising awareness is something I’m really passionate about. I want to help educate others about the warning signs and how to spot them sooner.”
I’m a non-smoker and had no symptoms of the cruel disease. I want to shout from the rooftops for people, especially the younger generation, to get checked.
“My Instagram blog has become a real source of comfort and not only for me. It’s a place where my son can go to watch videos of me, hear my voice and extract strength if he ever needs it.
I want to be an advocate, to make a difference for both myself and for my son.
Continuing to live is so important to me. Our lives are different now and I say ours because we are a close family, my husband and I are one.
We no longer hesitate, life is precious to us, and memories are being made every day in our family. We plan to see as much of the UK as possible now, we’ve already booked Cornwall and Scotland this year.”
