Chanita Stephenson lost her mum, Chondelle at the beginning of the year. Chondelle was only 47 years old, so lung cancer was not something she or Chanita ever thought about.
But having gone through this terrible ordeal, Chanita is determined to help shine a spotlight on lung cancer in younger people and the obstacles they faced in getting a diagnosis.
“It’s safe to say that 2024 has been the hardest year of my life. Losing Mum, at a time when we were the closest we’ve ever been, is devastating but I think it’s important to share this experience to raise awareness and stop others going through such heartache.
An unusual symptom
“Mum didn’t have what you would consider ‘normal’ lung cancer symptoms. Her only symptom was hip pain. She went to the doctors, but they couldn’t pinpoint the cause of the pain. This dragged out for several months.
“I kept saying she needed to go to hospital, but Mum refused. She’d come up with excuses not to go. She didn’t want to wait in A&E for hours, she’d say. In hindsight, I think she was just scared what they might find, and given what’s happened since, I guess she was right!
“The hip pain got worse and eventually I managed to persuade Mum to go hospital. Initially, they thought she had a hernia but as time went on, things weren’t getting any better.
“At Christmas, she just wasn’t herself. Mum was loud, and crazy in a good way. When she walked into a room, everyone knew! You couldn’t mistake her dirty, cackling laugh but, during this time, she was becoming quite subdued.
Suspected lung cancer… but no action
“At the start of the new year, she underwent a series of tests and in May, we were told she had suspected lung cancer. It obviously wasn’t the news we expected or hoped but I was optimistic. My friend’s mum had lung cancer, and she had surgery so I naively thought Mum would be able to do the same.
“However, even though doctors suspected Mum had lung cancer, they sent her for more, seemingly random tests, including a mammogram and tests for gynaecological cancers. It wasn’t until another two and a half months that lung cancer was finally confirmed. By then, the prognosis wasn’t good. The cancer had spread to her pelvis and therefore incurable.
“It felt like every other possible cause was investigated first. It was almost like Mum having lung cancer was too implausible, even though that’s what the tests were showing. Because of that we lost vital months, time that Mum could have been receiving treatment to fight the cancer.
“My life has not been the same since the 8 August. The communication was awful, both between departments and to us. I spent every day chasing up appointments, calling about test results, trying to find out what was going on. It made an awful situation so much harder. It has also left me questioning if more could have been done?
“After waiting so long for a definitive diagnosis, things finally started to happen after that. Mum started chemotherapy. She was due to have six rounds but only managed two. She was suffering from high fevers so doctors thought she could have an infection.
An awful burden to bear
“Mum didn’t want to know her prognosis but allowed the doctors to share all the information with me. I remember seeing the scans and even I could see how bad it was. The oncologist said there were too many nodules to count. He then told me Mum had 6-9 months, with treatment.
“Being the only person with that knowledge was really hard. I felt trapped by it, despite to keep a brave face for Mum whilst in my head, knowing we had such little time left together.
“I tried to make sure we made the most of the time we had. Mum spent some time on the cancer ward, but I would come and take her out for the day. For my birthday, we went and got matching tattoos.
“However, this ‘celebration’ was cut short; the hospital called and asked for us to come back as soon as possible. It doesn’t take a genius to work out that the news wasn’t going to be good.
“The oncologist told us there was nothing more they could do. It felt like a breakup. It was so final. It marked the beginning of the end, and I was heartbroken.
“On New Year’s Eve, we planned to have a takeaway in her hospital room and a little glass of prosecco, but Mum deteriorated. She was sedated and unresponsive and I sitting in her hospital room, only it wasn’t my mum anymore. She passed away on 2 January 2024.
Raising awareness
“The weeks and months that passed have been so hard, and I’m dreading New Year’s Eve. But it felt important to share this experience as awful as it is.
“I don’t want to frighten anyone who has lung cancer, or whose loved one has lung cancer, but I feel like there are so many things that people can maybe take from our experience and try and avoid happening to them
“Firstly, lung cancer can happen to anyone. Mum was only 47 years old. Everyone is so shocked that she was so young.
“Secondly, if there’s anything that doesn’t feel right – whether it’s a cough or hip pain – go to the doctors and keep pushing for tests and scans until they find out what the cause is.
“And finally, if you or your loved one is diagnosed, keep in constant contact with the multidisciplinary team (MDT). Mum should not have had to wait as long as she did and I should not have had to push as much as I did, but that’s how it is for so many people so you need to push, and call, and chase, and if necessary complain. Lives are on the line and you need to know you’ve done everything you can to fight.”
Chanita shares her mum’s story as part of our Let Go of the Labels campaign for lung cancer awareness month, which calls for us all to stop thinking about lung cancer in terms of ‘smoker’ and ‘non-smoker’.
Charity chief executive, Paula Chadwick, said: “It is vital we share stories like Chondelles, not to point fingers or blame but to help educate and stop this from happening to anyone else.
“Chondelle’s story shows us that you don’t need to be a certain age to get lung cancer. We just need to recognise that lung cancer, like other cancers, can happen to anyone.”
If you are concerned about symptoms or would like advice about how to get the most out of your appointment, check out our blog.