People came out of the woodwork when Joy T Barnum started singing at the St Georges Christmas Shop N Stroll on Sunday afternoon.
Passers-by stopped in their tracks to listen to her medley of Christmas songs. Even Santa Claus showed up.
But halfway through her set she got a little teary-eyed and had to pause.
“Two months ago I couldn’t do this,” the singer told the crowd. “I’m back …”
She has spent the last 21 months fighting for her health.
The first sign of trouble happened in March 2020 when she awoke to find blood in her bed.
“I was like what the deuce is happening,” she said. Because the blood was near her head she thought maybe she was having a brain haemorrhage. Then her mother decided she had bed bugs.
Ms Barnum had her bed steam cleaned.
“For two days everything was fine,” she said. “Then there was blood again.”
It was a full month before she put all the pieces together and realised her left breast was leaking bloody fluid.
By then the island was in full lockdown because of Covid-19. A quick bit of googling revealed that bloody discharge from your breasts can be a sign of cancer, but her doctor’s office was closed because of the pandemic. The minute it was open again she scheduled an appointment.
Her general practitioner took her symptoms seriously and ordered a mammogram. It came back clear.
An ultrasound also found nothing.
“The people at the scan said you’re fine. There is nothing wrong with you,” Ms Barnum said. “I went back to the doctor and said, I’m not fine. I’m bleeding. The doctor said I’m going to order another test for you.”
Her doctor called for a biopsy, but because Ms Barnum’s previous scans had come up clean, she could not have one.
“I understand now, if they don’t see where a mass is, they don’t know where to guide the needle,” she said. “So I get it. But also, now I understand that we have the iPhone 4 of machines here. And we paid a lot of money for them. We are trying to get enough insurance money to pay that off, but just like a car that you take off the lot, the next year there will be a new version that is better.”
The doctor’s next move was to send her to her gynaecologist. He seemed dismissive of her symptoms, saying all women had a little bloody discharge from their breasts, from time to time.
“I said no, that is not normal,” Ms Barnum said. “Then he said I am going to take samples of it. I said at that point I could fill up a shot glass. I was just squeezing blood out of my chest too fast for him to suck it up with his equipment.”
Again the tests came up clear of cancer.
A friend put her in touch with a doctor at a clinic in Texas. That doctor recommended she see another doctor in Bermuda and arrange a breast MRI. She took her advice, and had a breast MRI and a biopsy. This time there was something, an adenoma and a papilloma, small non-cancerous tumours.
Her gynaecologist said he would take out the papilloma, but not the adenoma. He told her it was too small and he did not have time to look for it. He told her that these things usually had a “little cancer”, but it was nothing to worry about. Feeling this medical professional was being too cavalier with her health she found another gynaecologist.
But then she had to put thoughts of surgery and testing on hold, when she lost the job she kept solely to maintain health insurance. With numbers down due to the pandemic they did not need her.
She took out her own full coverage insurance with a new insurance company, but soon learnt that they would not cover the surgery to remove the small masses until she had been with them for a full year, because they considered it a pre-existing condition. So after two months with the new company, she cancelled her insurance with them and went onto HIP, paying for supplemental coverage. Because she was unemployed, her mother helped her pay for it. With this insurance, she only had to wait three months before her health insurance would pay for surgery.
She grew depressed during this time.
“I did not have a job or anywhere to go and I could not wash my dishes,” she said. “I felt there was something wrong with me and I was dying and no one would tell me what was wrong with me. It was pretty awful.”
She took solace in her twin eight-year-old nieces, Elizabeth and Grace. Her love for them made her fight for a diagnosis.
One day, through Facebook she told her friends what she was going through. Many people reached out offering suggestions or encouragement. Then, she got a call offering her a new job doing deliveries for a pharmacy. The job came with full health insurance through a group policy. It was with the same company she had used before the pandemic. They offered her the same coverage she had had before the job loss.
Now she reached out to Dana Farber Cancer Hospital in Boston for further testing.
“I just called Dana Farber and said is there a way to get in?” she said.
There was. She could be tested at Dana Farber’s sister hospital, Brigham & Women’s Hospital in Boston. With a referral from her gynaecologist insurance would cover it all. Dana Farber would handle her care if she was officially diagnosed with cancer.
“My mother and I went to the appointment and the doctor said we have looked at your things,” she said. “He said it is great that you sent us everything that you needed from October, but we can not read the MRI. I had the MRI done at King Edward VII Memorial Hospital. That is when I found out that our equipment is not up to date.”
At Brigham & Women’s she had various scans done of her chest, including an ultrasound. When the radiologist spotted something on the screen, she started to cry.
“I said they told me in Bermuda that there was nothing wrong with me and to handle it from home,” she said. “He went ‘how in the world are you supposed to handle this from …’ ”
A year after she first noticed blood in her bed she finally had an answer. Her left breast was riddled with stage one cancer. The good news was, there was no sign of it in her right breast, and it had not spread to the rest of her body.
“They said they could try to save my nipple but there was a mass behind my nipple that was a precancerous tumour the size of a golf ball,” she said.
She believes it was initially missed because the equipment in Bermuda, while not old, is already outdated.
“It should not be this way,” she said. “But I don’t know what it is going to take besides private donors to get it where it needs to be and be able to up keep it continually.”
“Healthcare should not be a rich person’s thing,” she said. “Life should not be for someone who has money. During the pandemic, the government gave me a $100 a week for 14 to 16 weeks and I was grateful. If they can find that then there is a way we can find money so that everyone is insured.”
And she said the policy of saying you can not get a biopsy unless the scans show something, is inherently flawed.
“Talking to doctors in Bermuda I felt difficult because I wanted care so that I could live,” she said.
She persisted in her fight to get diagnosis and treatment, but she worried that other women would give up.
“There is no such thing as no,” she said. “There is always going to be a different avenue.”
After doctors discovered the problem, her treatment was transferred to Dana Farber.
She would need surgery to remove her left breast and reconstruct it. She would not need chemotherapy or radiation.
She went home for several weeks to await her first surgery. She spent the summer singing, then had her left breast removed on August 16. Her breast reconstruction, using her own stomach fat, was done on November 6.
“In between surgeries I heard about Flora Duffy,” she said. “I decided to write her a song.”
Recording it in the studio was challenging, because she was still recovering from her first operation. She got breathless and light headed and had to sit down after making the recording. On Flora Duffy Day on October 18, she was very proud to sing the song for the Olympic athlete.
She told doctors at Brigham & Women’s that she always wanted to have a baby. Staff at the Brigham & Women’s fertility clinic helped her make a plan to reach this goal. She went through two rounds of IVF, thanks to some financial backing from a friend, and harvested four eggs which were put on ice. Because her cancer is Oestregen driven, she will be on a drug that causes menopause for the next five years. After that, she can try for a baby.
In the meantime, her focus is on her singing. She is now selling a collection of her Christmas music including a new song written by Bim Bademosi called the Gift, on a USB drive for $20. It is available at Pull My Hair on Front Street, at Long Story Short on Water Street in St George, through www.Iamplantbased.store or directly from her.