Jackie on waiting too long for potentially life-saving scans and treatment.

Published: 13 June 2024

Jackie is in remission for lung cancer. She is caring for her mother Rosemary, 83, who is now being treated for lung cancer.

"The waiting and the constant chasing makes me feel irritated and angry."

My mother, Rosemary, had to wait 8 months to be diagnosed with lung cancer as a result of delayed appointments. She finally had targeted treatment on the tumour in January but is yet to be told the results, and so we have no idea if the treatment has been effective.

The waiting is endless, and she feels very fortunate she has children. She’s said she would have given up without us because she’s had enough. She’s had enough of waiting for phone calls that never arrive or letters that come too late.

I’m constantly trying to chase appointments for her on the phone. If I get through to someone one minute I’ll get told her appointment is this date but then the next minute I’ll be told the appointment is pushed back and it’s via telephone. You certainly cannot do a CT scan over the phone. Her next follow up appointment is in October and it’s long, long overdue.

"The last time I took my mum to hospital, she was in a corridor for over 36 hours despite being a lung cancer patient. "

Some of the wording we receive is so confusing, and there’s often no clarity on what it means or what are next steps for her. I read a letter recently for my mum and it briefly mentioned cancer and that they might have found something else. When I finally got through to a consultant, they stated that it had been worded wrong.

I feel guilty because the waiting and the constant chasing makes me feel irritated and angry. I’ve not been able to fully process my own diagnosis and recovery as I’m constantly stuck in lung cancer ‘limbo’ trying to chase appointments for my mum. I think to myself, am I ever going to get away from lung cancer?

“It’s not in my family’s nature to give up but my mum has had enough. I can see it in her, how it’s getting her down. ”

The state of the NHS is shocking, and patients like my mum are being left to fall through the cracks. Especially as we know delays in getting scans and treatment can cause cancers to progress to a further stage.

It affects the whole family as my mum doesn’t want to burden anyone, and she doesn’t want to ask for too much as she understands the NHS is understaffed and they’re doing their best. I lost my father to lung cancer in 2012 and I don’t want to lose my mother. I’m doing my best to keep her here with me.

My mum had targeted treatment on her lung cancer, which was a beam, so she had a mould made. After which the doctors needed to check her status and see if the treatment has worked or if the cancer is still there. But she’s had no follow up appointments. Has it worked? Has it shrunk? We still don’t know. We were meant to have a follow up appointment but it was cancelled. They said they would speak to my mother on the phone but nobody rang her.

"I can see the effect it has on my mother’s wellbeing. We both feel constantly anxious."

She’s waiting by the phone to hear what the status of her cancer is, not knowing if it is continuing to grow inside her and being led on by false promises of phone calls and cancelled appointments. She’s been promised a CT scan but hasn’t had one since treatment.

It breaks my heart to think about the cancer that could be growing inside my Mum and all I can do is try and chase appointments and phone calls. How can they expect my Mum to wait till October, for a phone call appointment where she might not even have a scan?

"It saddens me that my mum has not received the same level of care that I did."

Family photo of Rosemary, who has faced a number of delays for cancer care during the past year.

My lung cancer was caught as part of a clinical trial which there was a spotlight on, so I’ve seen the speed at which things can run. There was no ‘spotlight’ on my Mum, and so she waited 8 months for a diagnosis. It saddens me. Then it causes me to feel guilty because it’s wrong and she’s older and I’m younger and can deal with it. I always felt with my father, I wish I could take the cancer away from him. And now, just after recovering from my own diagnosis, I feel the same for my mother too. I wish I could take this from her.

"This general election, it’s important for all parties to connect with the real-life experiences and realities that people living with cancer are facing.”

Cancer is only on the increase, in a few short years we’ve gone from 1 in 3 to 1 in 2 – and in my family’s case it was myself, my mum and my dad. The way my mum has been treated is shocking, and no person should have to endlessly wait to know if their cancer is growing inside of them and getting worse with no end in sight.

MPs need to commit to making real change so that patients like my mother do not have to wait by the phone for calls that never come and appointments that are continuously cancelled or delayed. If my mum didn’t have me, she would have given up. But I’ll never give up on speaking up for my Mum.

"MPs need to commit to making real change so that patients like my mother do not have to wait."

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