Helen Fivelman – The beauty of life

Helen Fivelman shares how she is handling metastatic pancreatic cancer and how the diagnosis has made her more aware of the beauty of life.

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Helen Fivelman (66) lives in Glenhazel, Gauteng. She is a widow and has one daughter and three grandchildren. 

Last year May, Helen was diagnosed with pancreatic cancer; this came after a series of medical investigations. Three months prior Helen was fatigued which she put down to the fact that she swam five times a week and that her age was catching up with her.

However, after experiencing a shooting pain through her thorax in the early hours one morning which left her only being able to sit and not lie down, Helen went to the gastroenterologist who has treated her for ulcerative colitis for 15 years. It has been well-managed with mesalazine.

A gastroscopy (test to check inside the upper part of the digestive system) as well as an MRI was done, which revealed pancreatic cancer. This news came as a massive shock to Helen as there is not a trace of cancer in her family, besides her husband passing away from lung cancer caused by smoking. 

The doctor explained that the pancreatic cancer wasn’t linked to the ulcerative colitis.

“I still told the doctor that I think he had gotten his patients mixed up. My daughter was with me and after hearing the news, she was a total wreck and had a complete meltdown, so my focus was on pacifying her. In that moment, I told myself I will deal with this,” Helen explains.

Helen adds that perhaps the distraction of her daughter was a positive. 

Treatment

Three weeks later after a port was inserted, Helen started 22 cycles of chemotherapy. She would have one cycle over three days, the first day was done at the oncology unit then she would come home with a chemotherapy pump for the next two days. This took place every two weeks and took over a year to complete.   

Due to the cancer being in the body of the pancreas (not the head) and surrounding the pancreatic artery, surgery wasn’t an option. 

In January this year, once the chemotherapy had shrunk the cancer enough, Helen had stereotactic radiosurgery. This is a precise form of therapeutic radiation that carefully aims beams of X-rays at the tumour through the skin from multiple directions, to treat the cancer in her pancreas as well as four lesions that had spread to her liver. 

Given six months to live 

Unfortunately, Helen had a very unpleasant experience with the first radiation oncologist she consulted. 

“I was told that she can’t help me and that I only have six months to live but she would only charge me half her fee. This was all the while her massive desk separated us,” Helen explains.

Helen refused to accept this and consulted with a new radiation oncologist, who she says is wonderful.   

Stereotactic radiosurgery

“I remember the new radiation oncologist saying he had been waiting for two years to treat a patient like me. The stereotactic radiosurgery was a success in regard to the liver as it’s a stable organ but there was a slight delay with the pancreas due to it being an unstable organ, meaning it moves around so it’s hard to target,” Helen explains. 

Helen was advised to adopt a special diet to stop gas from forming in her gut to help stabilise her pancreas. She consumed gluten-free foods and avoided fruits and vegetables. Exercise was also prescribed so instead of swimming (Helen was concerned about swimming with a port in), the 66-year-old walked 5km every morning in the parking lot before the session. Thankfully, this stablised her pancreas and the remaining session could be performed. 

Helen continued to manage the ulcerative colitis during treatment. 

Maintenance chemotherapy

Helen’s oncologist gave her the option of having maintenance chemotherapy until she went for her next scans. Helen opted for the oral chemotherapy tablet (capecitabine) in June. Though, due to the severe side effects (neuropathy; peeling of face, palms of hands and soles of feet; severe diarrhoea), the oncologist stopped it in August. 

A new small lesion was seen in the liver on the latest MRI, which will be treated with external beam radiation.

Moved in with daughter

When Helen was diagnosed, her daughter suggested Helen sell her house and move in the cottage on her property. Helen agreed and says it was the right thing to do as during treatment she was too weak and fatigued to live on her own. The plus side was that she had the constant love and care of her very protective grandchildren every day. 

Helen, who is a nurse, stopped working while on treatment but adds, “I read 54 books; my Kindle even burnt out,” she says laughing.

This August, Helen started working again as a post-partum wellness nurse. She adds that even though she is a nurse, she chooses to wear the patient hat during treatment. 

“Being on the other side (a patient) would have made me a better nurse. 

I have far more compassion and now know that holding a patient’s hand when they’re feeling terrible would have made a bigger difference than just giving another pain killer. I’m also more astute and aware of the beauty of life,” she says. 

Helen chose not to go to a support group. “I’m mentally strong and attribute my successful outcome due to medical personnel, family, friends, and a positive attitude,” she says.

In memory of her husband

Helen hopes to go into palliative care nursing in memory of her husband. She recalls her last moment with him, “He had lung cancer but was a passionate smoker, he could shower with a cigarette in his mouth without it going out. He died peacefully at home. He asked me to light him a smoke. He took a drag, smiled, and passed away.”