I've got incurable lung cancer - here's the unvarnished truth of what that looks like
‘Yahoo News - Insights’ is a new series in which we hear directly from people with an inside track of the big issues. Here, Jules Fielder talks about living with lung cancer and why she is fighting to make a difference.
Jules Fielder is a 39-year-old mum of one from Hastings who is living with incurable lung cancer and campaigns for better awareness of the disease.
This month marks Lung Cancer Awareness Month and charities are tackling misconceptions as they warn lung cancer in women is on the rise and that non-smokers can be affected by lung cancer too.
If you glanced at my Instagram account you’d think I was any other 30-something mum; going to festivals with my husband and son, weekend trips with the girls to Dublin, glammed up for a party or trying out the latest food trends at a London market. But while on the outside I look a picture of health, on the inside I’m fighting a battle. I have incurable lung cancer.
If you saw me dropping my son off at the school gates, you wouldn’t know that earlier that morning I’d had to take 11 pills to stave off the cancer, the pain and the side-effects of treatment such as crippling diarrhoea or constipation.
If you saw me lying on the beach on holiday, you wouldn’t know how hard it was to get travel insurance or that the inside of my suitcase resembled a pharmacy packed with painkillers, constipation and diarrhoea medication, mouth ulcer gels and creams for my skin. My life now revolves around preventing illness. With a low immune system, the slightest infection risk, even having cracked skin could be game over for me.
And if you saw me in a shop buying my husband a birthday card, you wouldn’t know how much being there for his party would mean to me. That every time I witness another milestone, I feel like a character in a Mario game, collecting another coin. Kerching! More precious time banked.
Being diagnosed with lung cancer in November 2021 was the news that shattered my world but it also brought blessings – knowing who my true friends are, cherishing my loved ones and packing in as many memories as I can.
Like most people, I thought I knew all about the symptoms of lung cancer – a hacking cough, difficulty breathing. But I didn’t have any of those symptoms. I had a stabbing pain in my back that medics thought was sciatica, a pain in my shoulder and tingling in my hand that was dismissed as tennis elbow and a crackle in my throat that was dismissed as asthma.
I had a stabbing pain in my back that medics thought was sciatica, a pain in my shoulder and tingling in my hand that was dismissed as tennis elbow
I didn’t fit the stereotype of someone with lung cancer either - an older man who smokes. Worryingly, these misconceptions that women and non-smokers don’t get lung cancer are widespread. In fact, lung cancer kills more women each year in the UK than breast cancer and ovarian cancer combined. Recent research also shows the deadly disease is rising in women and is expected to overtake men for the first time this year.
People say: Remember, remember the 5th November. Well, there’s no chance I’ll forget that date as it was when I was diagnosed with lung cancer.
I’d gone to see my GP after discovering a chestnut-sized lump on my neck. She had reassured me it was probably a cyst but I was referred for biopsies and a chest scan.
When I walked into the consulting room at Eastbourne General District Hospital with my husband Paul, 38, and saw the Macmillan booklet and the nurse sitting there, I knew it was cancer. As the doctor broke the news, I went numb with shock. You could have poured a kettle of hot water over me and I wouldn’t have felt it.
It was Paul who broke down first.
I couldn’t believe it was lung cancer. I didn’t smoke, have any of the ‘usual symptoms’ and I questioned: why me. But the consultant reassured me it was not my fault.
We were still processing the news ourselves when we told our son Toby, 14. Like me, he had questions but it was too early to know any of the answers. Cradling him as we both cried, I felt helpless that I couldn’t take his pain away.
I decided I needed an army of support to get through this and I didn’t want news of my diagnosis to spread through a trail of whispers so I announced the news on Instagram.
Thankfully, family and friends rallied.
The next few weeks were a blur of blood tests, scans and appointments – and then I was dealt a crushing blow.
A consultant showed me a scan of my lungs, covered in white dashes like fireworks. The cancer was a particular type called EGFR+, mainly associated with non-smokers and had spread to both my lungs and into my pelvis. It was inoperable and incurable.
I was never going to get better.
Through tears and rising panic, I asked: How long have I got?
I was told that it was impossible to say. But my Macmillan nurse offered hope, saying: We’ll do the worrying, you do the living.
I had radiotherapy to blast the cancerous cells in my pelvis and reeled with the news that it could make me sterile or infertile. While we weren’t planning on having another baby, it made me angry and sad. Cancer was stripping me of choices.
I had a huge team of doctors, nurses, palliative specialists, helping me to stay alive. It was hard to put my fate in other people’s hands. Counselling helped me through the constant back and forth between the stages of grief – sadness, anger, guilt and acceptance. The most painful thing was thinking about what I’d be missing - watching my son learn to drive, have his 18th birthday, go to university, get a partner, own his own home…
Thankfully, a game-changing drug called Osimertinib, which could halt my type of cancer, gave me hope. It took a few months to get the dosage right and control some of the crippling side-effects but it has kept my cancer stable. It’s buying me time.
Since diagnosis, I have a new sense of purpose and I want to be remembered for making a difference. I campaign with charities like Roy Castle Lung Cancer Foundation and Macmillan to shine a spotlight on lung cancer symptoms, break down stigma and campaign for better care.
I don’t sweat the small stuff anymore and I don’t put off doing things that make me happy
I seize every opportunity now too. Go to parliament to tell MPs what it’s like to have cancer? Yes. Have coffee with the Prime Minister’s wife to raise funds for a charity? Sure. Go to Mauritius for my 40th birthday? Hell, yes.
I don’t sweat the small stuff anymore and I don’t put off doing things that make me happy, whether that’s family time at home or jetting off to Italy and Greece. My faith is more prominent than it ever used to be. I like to think that whoever is up in the clouds is part of my cancer team, watching over me. If I see a white feather or a robin it really lifts my spirits.
Meeting other incredible people with incurable cancer has been a huge support but when cancer snatches someone away it’s so tough. You grieve for them and it brings your own mortality into sharp focus.
My cancer means I’ve had to have serious conversations with Paul, things I never dreamed I’d have to do in my 30s. Talks about finances, what will happen when I go, how I want my son to be raised. I’ve mentally boxed it all up now – it’s too much to think about.
Like everyone, I have good days and bad days. I might wake with a mouth full of ulcers, crippling diarrhoea or have a panic attack because I’m waiting for the results of one of my three-monthly scans. Or I might have a good day where I can forget about my cancer, putting on fancy dress for Halloween, dancing with friends in the kitchen or covering the house in ‘80s style Christmas decorations so my son can experience the Christmases of my youth.
Inoperable and incurable are strong words but to me it doesn’t mean the end. I’m determined to set an example for my son so he knows whatever challenges come our way we can deal with them and I’ve found making peace with my situation is a much nicer way to live. I’m living a beautiful life now because of my diagnosis and I’m making the most of every minute.
Jules Fielder was speaking to Catherine Jones
For more information, visit the Roy Castle Lung Cancer Foundation
