1st November 2022

Jules’s lung cancer story

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At 38, Jules doesn’t look like someone who would be diagnosed with lung cancer and she believe this, coupled with her non-respiratory symptoms, meant she wasn’t diagnosed as quickly as she could have been. She is sharing her experience to help others avoid similar delays.

“I think people would look at me and never believe I have stage 4 lung cancer which has spread to three points in my spine and pelvis but this is my reality.

“I was diagnosed on 5th November after a series of what I now know to be lung cancer symptoms. I had been suffering from back ache, shoulder pain and then developed a lump in my neck. I was totally unaware that any of these were signs of lung cancer and my doctors didn’t piece it together either.

“My backache was put down to sciatica. My shoulder pain was diagnosed as tennis elbow – over the phone – whilst the lump in my neck was dismissed as a cyst or swollen gland that people get when they are run down. I wasn’t happy with this so pushed back and was referred to an ear, nose and throat specialist and this was how I finally started on the path to diagnosis.

“The ENT doctor sent me for an ultrasound and they told me they were taking biopsies. That was when alarm bells started to ring.

“My worst fears were soon confirmed and I was diagnosed with lung cancer. At that point, we didn’t really know what was going on. The person who delivered the news was not a lung cancer specialist and so couldn’t answer any of our questions. I was left fearing the worst.

As a mother, you just think of all the worst scenarios. I thought I was going to die and how was I going to tell my son. It just doesn’t feel real. You just keep asking yourself ‘Is this actually happening to me?’

Jules was diagnosed with lung cancer aged 38

“Three days later, I had a phone call to tell me the scans showed it had spread to my spine and pelvis. We were completely devastated and so scared. We were still waiting on the results of the biopsies so I still didn’t have a treatment plan. All those worst case scenarios were feeling like they were coming true. All we knew for sure was that it was stage 4 and it felt like the end of the road.

“But then my treatment plan came in. I met my consultant and asked ‘Can anything be done?’ and he said yes! He told me about a targeted therapy that was showing great success, especially in the younger generation, by basically putting my cancer to sleep. And that is what is happening.

“Each day, I take this one little pill – I call it my magic medicine – and every scan since has shown my cancer is stable.

“It doesn’t come without side effects. I think that’s the price you pay for having a drug working so invasively in your system. I have mouthwashes constantly. My skin is cracked and dry because all the oil has been extracted from my body. i have diarrhoea, sickness, loss of appetite and fatigue. The list goes on but that’s where your lung nurse comes in. She will make everything more manageable.

I’m now approaching a year since my diagnosis and I have come to peace with it. I do not live with cancer; my cancer lives with me. I am the one in control.

“However, I do still feel angry. I’m not a medical professional so I couldn’t have known that my body was sending out a message. I believe those little jigsaw pieces should have been picked up by a medical professional. I should have been scanned sooner and then my lung cancer could have been found out at a lower stage instead of stage four.

“I think lung cancer is very much associated to men. It has been largely thought of a manly illness, maybe someone who was a heavy smoker, or a man that worked in the asbestos industry.

“I want to break that stigma. And I will do everything in my power to do just that.”