When your wife refuses conventional cancer treatment
By Dr Ranjana Srivastiva for Life Matters
When I met Desiree and Leslie Lobo I desperately wished they could stay together forever.
But the bond between these two, which struck me as devoted, genuine and strong, was recently cut short.
Desiree Lobo died of ovarian cancer late last year. Her husband Leslie was by her side throughout her illness — loving her, caring for her and supporting all of her decisions.
I spoke with Desiree a few weeks before she died. She told me when her diagnosis came in early 2016 it was completely unexpected.
“We had gone camping and when we came back I started to feel ill and feverish, and that is how it all started,” she said.
At the time she was working and running a busy household. She’d experienced no signs of illness and had no family history.
“That night that we got the news saying that it is cancer — ovarian cancer — I can’t really pinpoint exactly how I felt because it was a whole lot of mixed emotions.”
She was stunned, and soon underwent the major surgery her doctors recommended.
While Desiree recovered well from her operation, she was told the cancer was aggressive and she would need chemotherapy to improve her odds of survival.
Initially she was willing to undergo the treatment. She attended the education session with chemotherapy nurses and was about to begin months of intensive therapy when something in her clicked.
She realised she was apprehensive about exposing her body to toxins and chemicals that are part and parcel of chemotherapy.
Desiree chooses a different path
At this point, she met a friend at a party who told her about alternative therapies and gave her examples of people who had benefited from using natural products.
“Two days before I was due to start, I had a friend who said ‘it’s up to you, it’s an alternative therapy, would you like to think about it’,” Desiree said.
The conversation made Desiree reconsider chemotherapy. She postponed her next few appointments with her oncologist, and soon she stopped going altogether.
She told her loved ones she was going to pursue alternative cancer treatments.
Leslie and the rest of the family “100 per cent” supported her decision not to have chemotherapy.
“It’s not a dignified way to live, you know, because it still restricts you from doing what you normally do, especially something that’s so aggressive,” Leslie said.
“This at least accorded her the quality of life, the dignity of having that choice and making that decision, and still looking as beautiful as she does without the chemicals going into her body.”
You see this wasn’t Leslie’s first encounter with cancer. His brother experienced recurrence after recurrence of lymphoma for nearly 15 years before he died. During this time, he received multiple rounds of chemotherapy and radiotherapy.
While some would argue the treatments gave Leslie’s brother an extra 15 years of life, Leslie believes his brother’s death highlights the limitations of chemotherapy.
So when Desiree made her decision, he did not once question it. He didn’t ask her to reconsider and or seek a second opinion.
Instead, he believed that he was there to support her in whatever decision she made.
“Nothing is a sure shot fix. So what do you do? You take a chance. You make a choice. You find something you want to go for, believe in it. We all supported her.”
Leslie left his job to care for his wife at home.
“I gave up my job and said ‘I will be with her — in sickness and in health and, a very long time from now, until death do us part’. I’m now with her all the time, so it’s a different life compared to the corporate life,” he said.
His days revolved around her needs. Pressing her to eat and drink, ensuring her many visitors were made welcome, placing the chair in the garden just so for her comfort, and driving her to her appointments.
Treatments included vegetable juices
For several months, Desiree consulted alternative providers and tried a range of different treatments.
“I chose to do different therapies rather than just go with one therapy,” she said.
“I did juicing, carrot juice, kale, celery, pomegranate … basically vegetable juices. I did the coffee enema. I did the black salve.”
The treatments didn’t make her feel any better and her tumour markers, a sign of cancer activity, kept rising consistently. But Desiree believed her alternative health practitioners when they reassured her.
They told her the rising tumour markers were a sign her body was responding to the treatment. The worsening wound in her abdomen, where she was applying the corrosive black salve ointment, was a good sign.
But the cancer never responded to these alternative therapies, the blood test results never improved and the tumour was never expelled. Instead, Desiree was left with a gaping wound in her abdomen.
Eventually, she became so malnourished and weak that she had to be rushed to hospital, where scans confirmed her cancer had advanced.
Her heavily swollen legs made walking impossible. Her abdomen was swollen and painful and the wound on her abdomen needed meticulous cleaning and antibiotics.
In the hospital, doctors told Desiree she was no longer deemed fit for chemotherapy, because the risk of serious toxicity outweighed the benefit.
They told her she had between two weeks and two months to live and she went home with palliative care services.
‘No regrets and no judgment’
As an oncologist, I meet patients like Desiree fairly regularly. People who forsake conventional cancer treatments and medical care to go the alternative route.
Chemotherapy treatment can be incredibly tough and the side effects can be harrowing for patients and loved ones alike. Sometimes things go wrong with chemotherapy too.
But with extreme alternative therapy, they inevitably go sour and people end up in a terrible condition. They often find themselves in debt and without support or explanation from the practitioners who encouraged them to persist with alternative treatment.
As well, many patients feel aggrieved, cheated and foolish when they find themselves back in the very hospital system they did not trust.
But Desiree said she did not feel angry about the situation.
“I did go through that phase but that was a while ago. I don’t have any regrets. I don’t judge any therapist. I don’t judge any doctor. I don’t judge anybody who’s treated me,” she said.
How cancer changes a relationship
I ask how cancer had changed their relationship. It hasn’t really, Leslie answered. But Desiree said if it had changed, it had changed for the better.
“I think he is much more attentive to detail. We are so much more sensitive to each other’s needs now. I feel I sometimes overwork him, so he needs his rest. Doing what he’s doing now is a 24/7 job,” Desiree said.
They confirmed what was already obvious — they were a tight unit, each lending the other strength.
“It’s not the destination. It’s the journey. Every day can be a good day, a happy day. A day that you can get by,” Leslie said.
Desiree Lobo died not long after she spoke to Dr Ranjana Srivastiva. She was 48. Dr Srivastiva is an oncologist and author. This is second feature in her series An Illness in the Family. Read the story of siblings Harry and Sophie Ryan.
Originally published at www.abc.net.au on February 12, 2017.
