What’s it like inside the mind of someone who’s just been diagnosed with cancer? How can you deal with that information? Dr Toni Lindsay, a clinical psychologist and allied health manager at Lifehouse, sees hundreds of patients in this exact situation every year, and is uniquely positioned to describe the process.
“We know that after people hear the word ‘cancer’ they don’t process much else of what they hear,” says Toni.
When people are first diagnosed, Toni says, they mostly describe a sense of knowing what is happening to them – going to appointments, talking to doctors and making decisions – but feeling entirely disconnected from the process.
“One of the analogies a patient of mine once gave me that I have never forgotten is the comparison of the cancer experience to feeling that they are speaking a language that is different from everyone else,” says Toni.
In the early stages of treatment, Toni explains, people can feel easily overwhelmed, as most of their mind is occupied by the cancer and worry about the future.
“Another thing that people consistently talk about is the sense of uncertainty and unknown that now exists in their world,” says Toni.
“Cancer is very good at stripping away lots of things for people that are really important, and so reconnecting and engaging with sustaining and activities that feel important, helpful and purposeful is paramount.”
The Lifehouse psychology and counselling service works with patients, their family and carers through all aspects of the cancer process – whether receiving or finishing treatment, or at times when people are approaching end of life. Anxiety, depression, difficulties sleeping, and needle phobias are some of the difficulties that the service helps with, but Toni says, very frequently people are just trying to make sense of a difficult situation, and looking for some strategies to help them manage through where they are.
“One of the challenging things about cancer is that most of the time the anxiety that people are experiencing is very reasonable,” says Toni. So, the strategies that would normally work for anxiety might not be as helpful in this situation.
Naturally, default coping strategies vary from person to person. For some people, it might be a Netflix binge, says Toni, for others it might be making plans and preparations. Most of the time, people will find ways that work for them, and engage strategies that have helped them in other difficult situations.
It’s Toni’s team’s job to help people navigate the cancer journey in the best way they can. “Sometimes we give people the opportunity to work through the situation by talking through it, and sometimes people may come to us for support in making decisions about what treatment to do, or whether to do treatment at all. In this situation, we don’t tell people what to do, but provide a structured framework around looking at the pros and cons of situations to help them work out what to do next.”
“Quite a lot of what we do is simply translating some of the medical information for people that they have heard and may not have entirely understood,” says Toni. “Lots of the time, the most important thing that we can provide is a safe space for people to think and talk through what’s happening for them, and providing some strategies around how to cope.”
Diagnosis aside, finishing treatment and the lead in to the next scan can be another unexpected time of uncertainty and stress for patients and their carers – particularly when everyone around them is excited that the treatment is done.
“At the completion of treatment, the reality of everything that has happened over the months before, as well as a new uncertainty and worry about the cancer coming back, can feel very overwhelming,” says Toni. “In this situation it’s very important that the people around them are able to support them in the way that they need, and this is often not about celebration.
Don’t assume that because the patient has finished treatment and is going back to work that it is all over. In fact, it’s generally the opposite – that’s when people need the most support.”
One of the things Toni finds the most difficult is advising friends and family what they can do to help. Although many of her patients appreciate that there are many people around them trying to help, consistently people will express that it’s hard to communicate to others about what it feels like to be diagnosed.
The most important thing, says Toni, is to ask and listen. “People generally tell me that they don’t need problem solving, and they don’t need solutions, they just want someone to listen… It can be tempting to ask for lots of information, but it’s helpful to ask yourself whether you are asking the question because it will be helpful, or because you want to know the answer?”
“The patients who tell me the stories of people who are really helpful are the ones who do the unexpected – organizing to pick up the kids, dropping a hot casserole on the porch and texting to let them know it’s there, coming home to a mowed lawn or just the text to see how they are going.”
At the beginning of treatment, Toni says, there will always be so much support it will feel overwhelming, but it’s in the middle or the end of treatment when it drops off that people really need it, patients and carers alike.
Cancer can be incredibly confusing, challenging and complex, and Toni explains that many people find that the best way of understanding it is by talking openly with a professional.
The counselling service is free for patients, their carers and families, and the team’s psychologists and counsellors see thousands of people every year.
When asked to describe herself as a cartoon character, Toni describes herself as Lisa Simpson crossed with the Road Runner – a combination that sets her in good stead given that the counselling service receives, on average, 60 new referrals a month.
“It’s very rare that I meet someone where cancer is the only thing going on,” says Toni. “Mostly they have other big stressors – work, home, kids, disabilities, chronic pain, financial, bereavement and trauma. But I never meet people who don’t work out how to manage it.”
This article was written by Sorry Thanks I love You, who is accepting coin donations for gift wrapping in both of its Sydney stores as part of its Random Acts of Kindness Program. Sorry Thanks I Love You has raised $1,500 which equates to 10 patient sessions with Toni and her team and is continuing to take donations and support us in other ways throughout the course of the year. We’re so grateful for this support – sincere thanks.