'Send that text': 'Cancer ghosted' mother urges people to reach out after loved ones' diagnosis

Donna Kelly undergoing treatment for breast cancer. 'I've got the all-clear from cancer now but you never get the all-clear. It is a lifetime diagnosis.'

A mother who experienced 'cancer ghosting' while undergoing treatment has urged people to "just send a text" when a loved one is diagnosed with the disease.

Donna Kelly, 43, said she never heard of the term 'cancer ghosting' until she realised that a lot of her friends had stopped contacting her as she battled breast cancer.

Donna Kelly: 'I felt that people had so much to be getting on with in their own lives and when you've been given a cancer diagnosis, you need so much support and care that a lot of the time, people can't give you that because of what's going on in their own lives.'

She also wants to raise awareness of breast density, which led to her cancer not showing up in a mammogram three years before her diagnosis, when she received the all-clear after going to her GP with nipple discharge.

The mother of two, who lives in Kilcock, Co Kildare, is now three years into her cancer journey, which she says is a diagnosis for life.

"I presented with nipple charge from my left breast to the GP when I was 37 years old," she said.

"I was referred to a breast clinic for a mammogram and told everything was fine. It didn't even occur to me to ask why there was discharge. You just trust the system, I guess.

"One night I was lying on my side and my left breast was itchy so as I scratched it, I found three lumps.

"Lying on my side possibly saved my life."

Donna Kelly: 'I was just so grateful for the days that people did have a few minutes to spare to send a text or call.'

She was referred back to the breast clinic where they did three mammograms and then sent her for an ultrasound as they couldn't really see what was going on because her breasts were so dense. "I had never heard of breast density before.

"They found three lumps and a biopsy was carried out on one. At that stage, everyone I think knew it was cancer. I knew, the stenographer knew, the consultant knew. I just had to wait for two weeks for results.

"It was hard being told. 

My initial reaction was anger because I was told it looked like I had cancer for quite some time. I was fuming. And to add insult to injury, the consultant delivering this news was the same one who told me three years before that my original mammogram was clear.

"Cancerous tissue had taken up 70% of my left breast so the medics proposed a single mastectomy. I was aware of the cancer gene brca 2 as there was a strong history of cancer in my family.

"So, I said that we were doing a double mastectomy. I was told they didn't remove healthy breasts but in my mind, there was no way I was coming back so they eventually agreed. I got results just before Christmas to confirm that I have the gene so chances were high that I would've had to return to the clinic.

Donna Kelly: 'When people meet you in the street, I don't think they are comfortable with their emotions and they are feeling your vulnerability and not sure how to react.'

"I've got the all-clear from cancer now but you never get the all-clear. It is a lifetime diagnosis.

"I had to stop chemotherapy and immunotherapy half way through my treatment because of the toxic effect it had on my heart. So now I'm a patient of the cardiology unit and I'm on beta blockers for life.

"I also had a hysterectomy so I was plunged into menopause. No-one prepares you for any of the side effects. It's like, oh, you are alive, here is some hormone therapy and we will see you next year.

I felt so angry and alone that I started to see a psychologist. That's when I first heard the term cancer ghosting.

"I just didn't feel supported. In the movies, you see someone get a cancer diagnosis and you see their sisterhood of about 20 women calling to the house and all talking and eating ice-cream saying they would all get through it together.

"That didn't happen.

"I found that a lot of friends didn't reach out anymore and I wasn't hearing from people for months and this was when I was in the throes of chemotherapy. Now, I did have a lot of people help me and I'm so thankful for them too.

"I posted in a support group about this and there were 75 comments from other women feeling the same way — cancer ghosted. They all had their own ideas and theories on this.

"I felt that people had so much to be getting on with in their own lives and when you've been given a cancer diagnosis, you need so much support and care that a lot of the time, people can't give you that because of what's going on in their own lives.

Donna Kelly with her daughter Katie (now 9). 'My partner and son had such a huge responsibility put on their shoulders, trying to work and study while caring for me and my young autistic daughter.'

"And as time passes, maybe they feel embarrassed and it gets harder to reach out. I was just so grateful for the days that people did have a few minutes to spare to send a text or call.

"Nine times out of 10, we (cancer patients) don't want to talk about cancer, we just want to know what is going on in other people's lives.

"My partner and son had such a huge responsibility put on their shoulders, trying to work and study while caring for me and my young autistic daughter. They had to do the housework, get me to three appointments a week and learn to empty my surgical drains. 

"They were exhausted and cancer ghosting had an enormous impact on them because there were less people around to offer a helping hand.

'I posted in a support group about this and there were 75 comments from other women feeling the same way — cancer ghosted. They all had their own ideas and theories on this.'

"When people meet you in the street, I don't think they are comfortable with their emotions and they are feeling your vulnerability and not sure how to react. 

"So when they ask how are you, you go, ah I'm grand and then you go indoors, close the doors and cry because we aren't comfortable with our emotions either. So I guess we all have a role to play.

"People say don't be afraid to ask for help and when people offer, you refuse. I'd say to anyone with any illness to ask for help and be specific. Ask them to do a school run or make dinner for the week, give them things to do.

"And most importantly to anyone whose friend has been diagnosed with cancer — send that text."