From not undressing in front of loved ones to losing all self-esteem, women waiting for reconstruction surgery after being treated for breast cancer have shared their experiences with health chiefs in Swansea Bay. The words of 10 patients in this predicament were narrated by NHS staff at a meeting of Swansea Bay University Health Board.
The women, who weren't identified, said they could not get on with life while waiting for breast reconstruction. One even said she no longer recognised herself. "My life has been put on hold while waiting," said one of them. "I don't feel like a whole woman and have to put a prosthetic in my bra - and worrying that someone will notice it, or it slips, is horrible. I don't let my husband see me undress, ever. And seeing my scar daily - well, I just don't look."
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Another patient said she was diagnosed in 2012 and had an operation nearly three years later, and a second stage of surgery two years after that. "I agreed to reconstruction (surgery) when I was in my early 40s - now I have recently turned 50," she said. "My marriage has suffered also, and I could go on and on." You can get more Swansea news and other story updates by subscribing to our newsletters here.
Another woman said she felt her life was on hold. "The body image aspect has dramatically affected my self-confidence and self-esteem," she said. "I feel that this operation will help me to move on, but now I feel like I'm in limbo, which I have done since my diagnosis."
One patient said the experience had changed her. "I used to be such a fun, bubbly person - fit, healthy and full of life," she said. "I don't recognise myself any more."
Another said she no longer wore what she wanted to wear and had stopped doing things she liked doing. "It's also stopped me from having a relationship because I don't feel comfortable explaining what is wrong with my chest," she said.
One woman said she was grateful she had survived, but claimed a lack of sufficient resources at the health board had allowed her cancer to extend further than it should. "The journey has been more difficult than the cancer," she said.
Another of the patients said she was receiving psychological support to help her feel more positive about herself and her future, while another said her mental health had been impacted greatly. "I understand that due to the pandemic the wait was unavoidable - however, I do feel if there was better communication from the health board then my anxiety would have eased slightly," she said. "It's really difficult not knowing if the surgeries are going ahead or when they will be starting again."
Another woman said her life felt on hold. "I'm 55 now so have not got forever to wait," she said. After the experiences were narrated on a video, Gareth Howells, the health board's interim director of nursing and patient experience, said it was really important to hear the views of people waiting for surgery.
Mr Howells said there was not a "magic answer," but that it struck him how the cancer journey did not end until reconstruction surgery had taken place. "To have that hanging over is really challenging," he said.
Board chairwoman Emma Woollett said the women's story was "harrowing", and added. "This is a particularly vulnerable group of individuals - it just does reinforce the number of people who are suffering at home."
Independent board member Reena Owen said she could understand the patients' feeling of angst, but added that a consultant for breast reconstruction and plastic surgery had been appointed very recently. "Hopefully they (the surgeon) will have an impact on the waiting list in the future," she said.
Mark Hackett, the health board's chief executive, said the stories were "completely distressing". He said surgery was being moved from Morriston Hospital, which was struggling to deliver emergency operations promptly at the moment, to Singleton Hospital.
These planned surgical operations will restart in the summer at Singleton, he said, which should increase capacity and reduce waiting lists. Mr Hackett said the health board would try to extend surgery times into Saturdays.
He added: "We are doing surgery at Morriston but it's not at a level that is needed to address these long-term concerns that women in this position have."
