Tereena goes to her “happy place” when she’s in pain or discomfort
Tereena Cocks, 52, has practised meditation and visualisation almost as long as she’s been living with blood cancer, and that’s more than half her life.
She was 24 when she was diagnosed with essential thrombocythaemia (an MPN) and has had many different therapies over the years on watch and wait.
“My disease was ‘recalcitrant’,” said Tereena, “I’d constantly swing between really high counts and really low counts, with episodes of extremely painful clots or nasty bleeds.
“My maintenance therapy was a knife’s edge; it was very difficult for my haematology team to manage,” said Tereena, who lives with husband, Craig, on acreage, an hour south of Adelaide, with their two German shepherds and two alpacas.
Learning to manage pain
“When I was first diagnosed, I had a lot of bone pain. At a pain unit, I learnt self-hypnosis and autogenic relaxation*.
“Back in those days, I was an ambulance paramedic and didn’t want to have anything that would interfere with my cognition.
“So, I learnt other ways to cope with the discomfort, by natural means, rather than by taking opiate-type drugs,” she said.
“I’m an hour away from the nearest major hospital which means I’d have at least an hour of severe pain, and meditation helps a lot with that.
“And during admission, when I’d have tests like having a needle stuck into a joint, I’d just go off to my happy place.”
Benefits of relaxing deeply
“When you’ve got a bad illness and the doctors are all fluffing over you, your life is in a bit of a spin and you tend to lose control,” said Tereena.
“This whole relaxation thing helps when you’re out of your comfort zone and there’s nothing you can do about it. You just calm your whole body down. I find that to be absolutely wonderful.”
“I mainly do visualisation and autogenic relaxation,” she said.
“It involves finding a comfortable, relaxed position, and having a mantra that you go through in your mind.
“You think about your toes first, give your toes a bit of a wriggle, and internally say, ‘my toes are warm and relaxed’, and you wriggle them and let them relax.
“Then you give your calves a bit of a flex and say to yourself, ‘my calves are warm and relaxed’.
“You work your way up and through lots of different areas of your body and it’s amazing where you’ll find you’re holding on to tension.
“There’s a breathing part and when you get to your lungs, you take nice deep breaths in and out. It’s a really relaxing thing to do.”
Tereena said the amount of time she devotes to this practice depends on how much time she’s got and what she’s using it for.
“You can do it very quickly when you need to, but you can also take as much time as you like when you’ve got no other things to do. It’s just a matter of training.”
Myelofibrosis and leukaemia
In October last year, Tereena found out her disease had transformed to an aggressive form of myelofibrosis. Then two weeks later, she was diagnosed with acute myeloid leukaemia.
She used visualisation a lot while she was away from home for her transplant. And she had “a bit of assistance”.
“I’ve got external security cameras at my house and I can use my telephone to access my cameras when I’m away, in hospital.
“I have that in the background, and when I’m lying in the hospital room, I can picture myself at home and being well – it’s such a comfort.
“I can hear all the familiar noises of home and the sounds of the animals outside and the birds flying over.”
For people without home security cameras, Tereena suggests they record the sounds of home to listen to during lengthy periods of time in hospital.
“I was in a really bad state when I was in hospital. I had Grade 4 mucositis – the worst it can possibly get.
‘I couldn’t eat or drink a single thing and had TPN nutrition. It was really painful, and that’s when I’d go into my happy place, to get me through all of that.”
Coping with cancer
Having worked in the health industry all her life, Tereena knows the benefits of a good mental state.
During challenging times in hospital, she thinks to herself… “each minute is a minute I don’t have to have again”, “I don’t have to do the last five minutes again”, and “today’s a different day and one day closer [to recovering]”.
“I just plod on, one foot in front of the other, always steps forward,” said Tereena.
“And I live each day to the best of my capabilities, enjoying the little things and not worrying about what I can’t change.”
Soon after her diagnosis, Tereena read a book about living in the moment, written by Vietnamese Buddhist monk, Thich Nhat Hanh. She’s still got The Miracle of Mindfulness on her bedside table.
“You can learn some amazing things from it,” said Tereena, who practises mindfulness daily, usually in the morning.
“It puts you in a really good mental attitude. You feel good about the day, before it starts.
“I honestly think that if you put all this positive stuff in and around you then that’s what happens in your day… it comes back to you.
“It’s not just for when you’re in pain or unwell, it’s something good to use in life every single day.”
September is Blood Cancer Awareness Month, helping to raise awareness of every blood cancer. Learn more.
* A technique that involves progressive relaxation of the body’s extremities, heartbeat stabilisation, and maintenance of slow, deep breaths.
Cancer-related fatigue – what it is, how it can affect you and how to manage it
For many people living with blood cancer, cancer-related fatigue (CRF) is a side-effect that has an enormous impact on their quality of life.
What is fatigue?
In these videos, a Leukaemia Foundation Blood Cancer Support Coordinator, Andrew Smith talks about fatigue: what it is, how it can affect your life, and what you can do about it, including practical tips and strategies.
CRF is very different from normal, everyday tiredness and fatigue, where a good night’s sleep means you feel energised and refreshed the next day.
Despite sleeping for long periods, people with CRF wake feeling exhausted and don’t have enough energy to face the things they need or want to do in their everyday life. This type of fatigue has a negative impact on their day-to-day life.
Physically, CRF can feel like a heaviness or weakness, or a cognitive or mental feeling of fogginess, and of not being ‘switched on’.
The cause is not usually just one thing, but several. The blood cancer itself and cancer treatment can contribute to CRF, as can your previous level of fitness, overall health, previous medical issues, or a medical condition such as having a low red blood cell count.
It is important to get the latest up-to-date information to understand what CRF is and isn’t.
The effect of CRF can be mild, moderate or severe in how it affects you. Work out where you sit on this spectrum and whether it’s affecting your work or daily life.
If it’s highly-moderate to severe, consider asking one of our blood cancer support coordinators to connect you with a relevant health professional in your local community, such as an occupational therapist, exercise physiologist or a physiotherapist, who is good at managing this side-effect.
Also, map your energy levels throughout the day and across the week, to identify persistent low energy levels, and look for patterns in your energy levels.
Then you can apply the ‘three Ps’ – planning, prioritising and pacing – an energy conservation technique to maintain your health and well-being.
There’s always something you can do for yourself to improve your quality of life and lessen the effect of CRF. This includes getting quality information, connecting to the right people, and getting specialised support.
Self-isolation, social distancing, home quarantine – we’re all adjusting to new words and a new normal as this health pandemic sweeps the globe. However, for many people with a blood cancer, these practices are often second nature as they manage everyday life with compromised immune systems.
We all react differently to stressful situations. As a person living with or beyond blood cancer, you might be experiencing feelings of isolation, uncertainty and anxiety. As a caregiver, you might be feeling overwhelmed with navigating your loved one’s care while looking after your own needs. And as a family member, you might be feeling unsure of how you can help. This is all understandable, and you’re not alone.
The Leukemia Foundation is here to help. We encourage people living with or beyond blood cancer, caregivers and families to get in touch with us on 1800 620 420 (8.30am to 5pm Monday to Friday) or firstname.lastname@example.org.
14 ways to looking after your health and wellbeing
These are a few things you can do when experiencing isolation, uncertainty and anxiety as well helping you to feel your best.
1. Contact your cancer team if you’re concerned
Treating teams are already putting new processes in place to keep you and the staff safe. Knowing what they’re doing may be reassuring.
2. Take breaks from the media
Watching, reading, or listening to the news and social media about the pandemic constantly can be upsetting. Perhaps choose just once-a-day to check in on the news and remember to stick to trusted sources to avoid misinformation.
3. You don’t have to put on a brave face
This situation can be stressful and acknowledging that is okay. Most people find uncertainty difficult and it can be useful to think about ways you’ve handled stress in the past, such as through meditation or talking to someone.
Acknowledge. Notice and acknowledge the uncertainty as it comes to mind.
Pause. Don’t react as you normally do, don’t react at all. Pause and breathe.
Pull back. Tell yourself this is just the worry talking, it is only a thought or feeling. Thoughts are not statements or facts.
Let go. Let go of the thought or feeling. Imagine them floating away in a bubble or cloud.
Explore. Explore the present moment, because right now, in this moment, all is well. Notice your breathing and the ground beneath you. What can you see, hear, smell and touch – right now. Then shift your attention to what you need to do, or were doing, or do something else mindfully with your full attention.
5. Practice good hygiene
There is no evidence to show that people with blood cancer are at a greater risk of catching the virus, but because of your diagnosis there may be a greater risk of getting sicker if you do get it. Be extra vigilant with recommended precautions such as hand washing, not touching your face, staying at home and cleaning your home routinely.
6. Eat well
Good nutrition can support a healthy immune system. Follow a healthy menu that incorporates a variety of vegetables and fruits, whole grains, lean protein, and healthy fats. Eat small, frequent meals throughout the day to stay energised and ensure your body is getting enough calories, proteins, and nutrients.
7. Get enough sleep
Make sure you’re getting good, quality sleep if you can. Adults should aim to get seven hours or more every night. If you have trouble sleeping, try a few simple tips like going to bed at the same time each night, avoiding large meals before bed and if you need rest, keep naps to 30 minutes or less. If you’re concerned speak to your healthcare team.
8. Exercise regularly
Regular exercise can help support your immune system and promote good heart health. Aim for 150 minutes of moderate activity or 75 minutes of vigorous activity a week. Depending on your age, where you are in your treatment, and your present state of fitness, you might need to modify exercise routines, but spending some time moving and being active is great for physical and mental health.
9. Stay in touch
Use video calling tools such as FaceTime, Zoom, Facebook Messenger or Skype to communicate. Call friends and family as often as possible and let them know how you’re feeling so they can offer the support you need.
10. Enjoy calming activities
Cozy up with a good book, start an arts-and-crafts project or listen to music. Try streaming services, board games or online games for more entertainment.
11. Express yourself
Putting pen to paper, blogging, capturing videos or scrapbooking and journaling can help with how you’re feeling.
12. Get organised
If you’re working from home, create a dedicated space for work and break up tasks into bite-sized pieces.
13. Ask for help and accept help when it is offered
Ask someone to pick up groceries or medications for you. If you’re a caregiver, find support here.
14. Your GP is there to help
Your primary care team plays a vital role in managing many aspects of your overall health and wellbeing. If you feel you need any advice or guidance relating to your general health and wellbeing (including your mental health) please speak with your GP as there may be specific recommendations or referrals they can make.
Last updated on April 8th, 2020
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.
As significant progress was made in blood cancer research, Professor David Joske became concerned a decreasing focus on the ‘patient experience’ meant the humanity in healthcare was being left behind.
Dr Joske has dedicated 20 years to humanising the treatment journey for Australians with blood cancer.
It began with his observation as a young consultant in the mid-90s at Sir Charles Gairdner Hospital (Perth) that “we were making a meal of this business of managing people with cancer”.
“I witnessed a lot of distress with delays with appointments and poor communication,” he said.
“My colleagues and those in nursing felt we were getting less and less time with our patients. We couldn’t express that we cared for them… we tended to make people feel they were on a production line.
“I have pretty much dedicated my whole professional life since then to trying to find ways to improve the cancer journey.”
A chance comment from a patient in 1998 prompted Dr Joske to challenge the status quo; to embrace a more personal, open-minded approach to care.
“A lot of my patients were trying complementary and alternative therapies but felt they couldn’t discuss them with their medical team,” explained Dr Joske.
“This wasn’t acceptable and created a barrier between me and my patients. I needed to become a doctor who showed an open mind on this.”
Reading up on an area traditionally rejected by modern medicine, Dr Joske found more evidence than he expected in the field of complementary therapies.
Not complementary medicines (herbs and supplements) which Dr Joske believes are “best avoided in mainstream treatment” but diet, stress and exercise, which he said are “terribly important”.
Developing a new approach to mainstream care
The chance came to develop and introduce a new approach to mainstream care with the opening in 2001 of the Cancer Support Centre at Sir Charles Gairdner Hospital with:
A quiet meeting place where volunteers from all walks of life assist with patient queries.
Information and resources for patients on support services, like those provided by the Leukaemia Foundation.
A range of safe and supervised complementary therapies, “that major medicine had rejected for thousands of years”, including acupuncture, yoga, music therapy, massage, reflexology, aromatherapy, Qigong, craniological massage and hands-off massage techniques.
The therapies were not only offered to patients, the effects were measured because there was a lot of push back and scepticism.
“The best answer was to gather as much evidence as possible,” said Dr Joske.
“Even the most sceptical general practitioners will respond to good quality evidence if you can provide it.”
There is a huge demand for these complimentary services. The centre sees 100-150 people each week and as it grew and research progressed, it became Solaris Cancer Care in 2006, then the Cancer Support Association with an off-health campus facility where the focus is on survivorship initiatives.
Traditional treatments remain essential
While Dr Joske is a big advocate for complementary therapies, he acknowledges that traditional treatments like chemotherapy are an essential part of a patient’s treatment journey.
“I regard chemotherapy, which is still the main part of most people’s initial treatment, as an investment, like a bank loan,” he said.
“It’s a long-term investment and you make the investment in terms of the short-term costs; feeling crappy, needles, drips, blood tests, and all the visits to hospital.
“But the return on investment can be life itself… so the short-term all-in cost on the immune system is well worth it.”
Dr Joske said the key to surviving and thriving through a diagnosis is the patient realising they have the right to manage their cancer in a way that is best for them.
Lifestyle management of cancer
“As I’ve matured as a consultant with the grey hair, I’ve come to see this topic as the lifestyle management of your cancer. I talk to people under my care with a very open mind on what they want to try,” said Dr Joske.
“We’re going to improve cure and remission rates, but there’s always that personal experience: the worst day of your life where you’re told you have cancer.
“You have to get your head around your life changing forever, then come up with how you’re going to manage your situation.”
The right exercise prescription
Dr Joske’s most important advice is to exercise.
“In the bad old days we told cancer patients when they felt tired during treatment, they needed to rest. Turns out that was not good advice,” he said.
“Then we went through a phase of telling people to go on walks. Turned out that wasn’t going to cut the mustard either.
“What’s needed is some resistance exercise as well, because cancer drugs and steroids tend to dissolve muscle and the only way to get muscle back or to maintain it is to use it,” explained Dr Joske.
“I’ve had patients several years out from their chemotherapy who still feel exhausted. Then, when you give them the right exercise prescription with some light weights and a gym program, within 4-6 weeks they start feeling like their old selves again.”
Watch the below video of Professor David Joske’s presentation on Humanity in Healthcare at the Leukaemia Foundation’s National Blood Cancer Conference (Melbourne, September 2018):
Fourteen years ago, when Dr Louella Crawford was being treated for Stage III breast cancer, she had a “full frontal” realisation – the mind plays an enormous role in your health.
She started to meditate, to have massages, and embarked on more study – enrolling in an arts degree majoring in philosophy of the mind and an advanced diploma in holistic counselling and psychotherapy.
“Fascinated by how the mind is involved in health, I began reading widely on everything I could get my hands on to do with psychology, the role of religion in health, spirituality, quantum physics, physics, quantum biology, neurobiology, neuroplasticity, neuroscience, psychoneuroimmunology, and epigenetics,” said Dr Crawford.
“Medicine is very objective. It’s about fixing things that can be measured and observed and is pharmacologically focused.
“Few doctors have the time to really inquire about what’s happening more broadly in a patient’s life… how is it for you, what is happening at home, what’s going on? And by and large they don’t recognise that stress, or more importantly how one deals with the vagaries of being human and having human experiences – good or bad – affects health. That is changing, but very slowly.
“I was looking for a bridge that spoke the language of science (medicine) and the wonderful and complex story of a person’s inner life… for want of a better word, ‘The Spirit’,” said Dr Crawford.
Evidence-based studies on the benefits of meditation
“Some interested scientists and doctors decided there was something to meditation but realised no one would take an eastern spiritual practice seriously unless there were some tangible studies.”
According to Dr Crawford, there are now thousands of “good studies” on the effects of meditation on all kinds of people, from beginner meditators to Buddhist monks and nuns. Using fMRI machines that look at functional brain anatomy, and EEGs (electroencephalography), measuring brain waves, they have found definitively that meditation changes the brain.
“What these studies show is that meditation, and as little as 10 minutes a day for three weeks, actually changes a lot of parameters physiologically including the way your brain functions1,” she said.
Meditation has been proven to reduce depression and anxiety, and increase empathy, compassion and meaning in life. It increases the depth of grey matter and changes brain waves, increasing coherence. It also increases high-level thinking and the capacity to focus.
“We all have cancer from time to time; cancer cells rise up and fall away. They disappear because our immune system is functioning well,” said Dr Crawford.
Meditation boosts your immune system
“I think what is interesting and important for people who have a cancer, is that meditation actually changes your immune system and been found to increase the number of natural T-killer cells (a type of white blood cell) and one of their functions is to mop up metastatic cancer.
“Meditation also reduces inflammation and there’s a lot of science indicating inflammation is possibly the underlying pathogenesis (development) of many illnesses including cancer, Alzheimer’s and heart disease.
“Meditation also reduces pulse rate and blood pressure, and a small but good study of Afro-Americans practising transcendental meditation showed it reduced the incidence of heart attack and stroke by 30%.
“So here we have a practice that is not only free, it has no side-effects, and as a medication, it does an enormous amount of good,” said Dr Crawford.
“If meditation was a drug, you’d have pharmaceutical companies falling over each other trying to get it to market.”
Stress reduces and meditation increases telomerase levels
In 2009, Tasmanian-born Elizabeth Blackburn won a Nobel Prize for discovering an enzyme, called telomerase, that repairs the telomeres2 on the ends of DNA. As we age, our telomeres shorten.
Prof. Blackburn teamed up with psychiatrist, Elissa Epel, who had a theory that stress might have a role in reducing the level of telomerase. Together, they designed a study showing that stress actually did reduce the level of telomerase, which Dr Crawford described as “paradigm changing”.
“Not content with this, they then decided to see if reducing stress via meditation actually increased telomerase levels. They looked at two groups of people – those who meditated and those who didn’t,” said Dr Crawford.
“The results were stunning. Not only did meditation increase telomerase levels, it also reduced neuroticism (the propensity to worry constantly), increased mindfulness (living in the present moment; a very spiritual attribute) and increased one’s sense of meaning in life. Meaning4 can be the simplest moment or action in life; something that gives a person a reason to go on despite the most terrible circumstances.
“What was even more extraordinary was that the increased levels of telomerase were purely and directly related to an increased sense of meaning in life. In other words, having a sense of meaning in life increases the repair of our DNA.
“To me this is an absolutely extraordinary and significant study3 that directly links the qualitative spiritual value of our inner world with our objective measurable physiology.
“How wonderful would it be to combine and marry treatment of our measurable physical problems with understanding and caring for our amazing complex inner worlds? The best of everything… that’s the way forward. It’s not an either/or thing,” said Dr Crawford.
Positive psychology, resilience and spontaneous remission
More than 20 years ago, in the U.S., Marc Barasch and Caryle Hirschberg5, were fascinated by the concept of spontaneous remission from cancer; when someone outlives a dire cancer diagnosis by many, many years or completely recovers.
Their study on spontaneous remission found a series of human qualities, including resilience, termed ‘hardiness’ in 1979 by Suzanne Kobasa, one of the first people to look at positive psychology. These qualities enabled people to respond appropriately and cope under stress.
They had a sense of control about how they responded to a situation (different to being a control freak); they lived wholehearted lives (they had spiritual qualities like gratitude, forgiveness, living in the present moment, a sense of awe); they had a sense of meaning in life, and they had a sense of not feeling alone… in other words, they felt connected to something, be it friends, family, animals, the divine, or even nature.
“What I find fascinating,” said Dr Crawford, “is the huge crossover here between the study of positive psychology and resilience, and what they found in spontaneous remission in cancer”.
Dr Crawford now works as a GP concentrating on mind/body medicine through the practise of ‘process work’6 – a form of psychotherapy that sprang from Carl Jung’s work and believes the mind and body are not separate, but simply different sides of the same coin.
“The more I practise, the more I absolutely know this to be true… the mind and the body are completely in sync. Obviously, it’s also what you eat, whether you exercise and what genetic predispositions you have.
Epigenetics and our DNA
“I focus on trying to speak the language of science and there is now an overwhelming number of studies in the area of psychoneuroimmunology that joins up psychology, the immune system and neurology, as well as epigenetics that says genes aren’t the only things that determine people’s health.
“Bruce Lipton7, one of the pioneers of epigenetics, says our beliefs, thoughts and feelings are entwined and affect the expression of our DNA.
“Epigenetics teaches that the DNA is like a set of architect’s plans that needs a builder to decide which parts of the plans to implement. This is incredibly empowering, to think that we may have some input or control over the expression of our DNA,” said Dr Crawford.
“Epigenetics is a burgeoning field that needs to be incorporated into medicine. It explains and looks at how we interact with our environment on every level, including nutrition, exercise, thoughts, beliefs and feelings, and how these affect the expression of our DNA.
“Nothing is the complete answer… it’s a very broad collection of a whole lot of things.
“In my practice, I advise people to meditate, but you’ve got to do the work on the stuff that you bring with you, and we’ve all got it – baggage.
“I have lots of anecdotes about people who changed how they viewed the world and how they existed within the world and environment, and it made a dramatic difference to both their psychological wellbeing and health.
Louella’s personal experience with cancer
“For me, it took the drama of being diagnosed with cancer before I thought – what’s going on here?
“I felt very grief-stricken on a whole series of levels. I’d get in the shower every morning because it was the only place I could cry without upsetting my children and husband.
“I was lucky. Friends gave me interesting books such as The Tibetan Book of Living and Dying8 and intriguing books on the mysteries of quantum physics. These stimulated my interest in areas of thought I never knew existed and began my quest into understanding the mysteries of our minds.
Finding peace enables healing
“However, it’s those hidden emotions – sadness, grief, anger, powerlessness, etc., and their expression that is the beginning of what is not an easy journey, but one that is so important to take… to find the peace that, at the end of the day, is all any of us wants. It is my belief that it is this peace that also allows our physical body to function and heal as best it can.
“I began to listen to myself and to my intuition, and to do what did and didn’t feel right for me. I learnt to say “no”. This is not being selfish, as we so often think – it’s about self-care.
“Before cancer, I always did what other people wanted me to do. I was completely disconnected to my own inner world and never listened to what I wanted or what I felt.
“I went into my healing space, and if people rang me and said, ‘can I come and visit you?’, I’d think to myself, I don’t have to say ‘yes’ to this, so I could say ‘no’ without guilt. And it was like – oh my god, this is so fabulous. I’d never realised you could say ‘no’ and it felt so good.
“Of course, this was my journey. Everyone has a different path to travel but whatever it is, it’s important.
“The difference between me now, and 14 years ago, is the awareness I have about my mind.
“In my practice, I teach three things that you need:
1. Awareness about how you exist in the world (this is where my practise as a psychotherapist is enormously helpful)
2. A will to want to change, and
3. You’ve got to practise it.
“Practise is what changes your brain and your physiology.
“In my view, how we exist within and respond to our world and environment, and how we incorporate every aspect of our mental and physical worlds, including our genetic makeup, nutrition and exercise, is what determines our health.
“And that is what science is starting to tell us. This is a truly holistic approach to living a long, healthy and happy life.”