Dr Sharon Alikhani has learnt that, sometimes, the smallest gestures can make the biggest difference.
As the medical director at PALS Cancer Care, Dr Alikhani is tasked with visiting patients and families as they grapple with the devastating news that their cancer is terminal.
“I sometimes go and see patients, and honestly I feel like I’ve done absolutely nothing,” she said.
“I’ve gone and sat in their living room, and I’ve spoken to them for 20 minutes and oftentimes symptom-wise they’re OK, but they’re just quite anxious.
“We end up talking about let’s say the colour of the sea – mundane things – and I leave thinking, I didn’t do anything, and I’ll sometimes apologise and say I’m sorry I didn’t have anything concrete this week.
“And they say, ‘You have no idea what your visits mean.’
“That’s because it’s a lonely road sometimes, especially in Bermuda. You can feel very isolated, very alone and quite scared, and so when the nurses and I go and say, ‘Would you like a cup of tea?’ and you sit down and you take time to talk about just normal things, they say, ‘You have no idea the difference that made.’”
Coming to terms with traumatic news is an immensely difficult part of the journey for terminal cancer patients and their families. One of the best ways of coping is contact with other people.
“As human beings we live and thrive on connections,” Dr Alikhani said.
“If you can keep a social connection, if you can make cancer not that taboo Big C, and find your people, find the people who give you joy.
“I visited a lady yesterday – she is the most inspiring person I look after. She’s in her 80s. She said, ‘I have two or three friends that visit me every week, and they’re the only people I let visit me other than family because they are joyful and positive, and they fill my life with good things. Anybody who hasn’t got that hasn’t got room in my life.’
“It’s amazing. She has figured that out. She doesn’t need people who come and say, ‘I’m so sorry, it must be terrible.’
“We need to remind ourselves we are on this earth to hopefully lead a good life to enjoy. Despite having cancer, you can still do that, even if you’re limited.”
All this might be easier said than done, however, for families of terminal cancer patients. How can they provide that vital support and positivity while, underneath, they are gripped with their own sudden wave of fear and anxiety? There is no easy answer to that question.
Colleen English DeGrilla, executive director at PALS, said: “If it’s your loved one, you’re like, ‘What can I do? How can I help What do they need?’ There are so many questions for the patient and then for the loved one.
“Oftentimes the family are thinking, ‘What can we do to fix this? Is there a cure? We want to try every treatment we can to keep our loved one alive.’”
As well as critical health-related decisions, you might have financial worries, especially if the patient is the breadwinner or the treatment is costly, as well as the dilemma of breaking the news to family members and countless practical decisions.
Unsurprisingly, one of the early coping mechanisms is denial.
“We see this often, where people flip-flop from denial to complete reality and acceptance, back to denial, all within the space of maybe half an hour,” Dr Alikhani said.
Yet generally, according to Ms DeGrilla, most families get there in the end.
“You can’t argue with what’s happening in front of you,” she said.
The good news for patients and families in Bermuda is that PALS is there to help.
“We have six nurses, we have a doctor, we have a social worker, we have a whole team,” Ms DeGrilla said.
“We also have connections in the community if someone needs therapy or anything else going forward.
“We try to be there as early as possible. We can support whenever and however they need. Medically, psychologically, financially. Anything they need, we try to help with. And we don’t charge them for anything we do.”
Dr Alikhani said: “If I was in a position where I had a cancer diagnosis, I would find it very scary and I would want a lot of people to help me through it, hopefully to my cure.
“If my cure does not happen, which unfortunately does not happen for many people, then we are there with them, for however long with whatever needs they have.
“If those needs evolve change, our input and how we are involved in that particular person’s life changes as well.”
Coping strategies are individualised and seek to take advantage of Bermuda’s cultural and natural environment.
Ms DeGrilla said: “In Bermuda, there’s a strong sense of religious belief. A lot of people get incredible security and comfort from those beliefs and will tap into their specific churches or ministers. Those communities can be incredibly helpful.
“I don’t think you need to broadcast it to everybody, but if your nearest and dearest know what’s going on, it will help. Tell people what you need.
“Bermuda is beautiful. If you can get out there in nature, we know that helps calm people. There are also lots of other strategies like mindfulness medication, music and art.”
One of the hardest things is telling young children that they will lose a loved one.
Ms DeGrilla said: “We use a lot of therapists in the community that help with kids, but we also try to encourage families to be honest.
“The kids are going to see it, they are living in the house, they see what’s going on. Be as honest as you can according to their age.”
For all its patients, PALS is in it for the long haul.
“Once you’ve been referred to Pals,” Ms DeGrilla said, “you remain in our family forever. Our family just keeps growing and growing.”
For more information, visit www.pals.bm
