Our Education and Support Program is here to help – and empower
The Leukaemia Foundation works closely with healthcare professionals to connect people living with blood cancer with our services.
A major part of this is the educational and support resources we produce, to support patients and their loved ones navigate specific areas associated with a blood cancer or blood disorder diagnosis.
Linda Saunders is the Leukaemia Foundation’s Education and Support Program Lead. She has a background in social work, with 23 years’ experience in hospitals and rehabilitation centres – 16 of those in the cancer and blood cancer realms. Linda also has extensive experience running support groups for the Leukaemia Foundation in regional areas.
“This interest led me to participate in a project within the Leukaemia Foundation, looking at running support groups nationally,” says Linda. “Around the same time, Covid came along, and community-based, face-to-face support groups were put on hold as we transitioned to national online support,” she says.
The Leukaemia Foundation’s online program continues to focus on health and wellbeing. It provides an added layer of information and support for patients, their caregivers and loved ones, particularly when they transition out of the acute treatment space.
The catalysed shift online has meant more people than ever have access to Leukaemia Foundation’s education and support services, aiming to assist people in managing blood cancer at home and in everyday life.
“Our webinar recordings are very popular – covering broad and relevant topics to many people with blood cancer.
“Topics around fatigue and nutrition are always high-value and well-received. Our men’s online support group is also well subscribed to.
“We also run targeted online support groups that cater to populations that have unique needs.
“We run these at varying times and days during the work week, including some evening sessions to accommodate those who are unable to attend during the day.”
Other seminars and webinars have covered topics such as fertility, sexuality, intimacy, palliative care, and bereavement.
There are plenty of advantages to being engaged in the program. “Patients and caregivers can make more informed decisions, gain strategies to self-manage, improve quality of life and feel less isolated.”
The 2023 education and support calendar has been developed based on consumer feedback. “We will be launching a support group for young adults specifically in April and for carers in October. We will also be rolling out closed bereavement support groups.”
Upcoming webinar topics look specifically at challenges for people with chronic blood cancers and disorders, fear of recurrence, autografts, aged care, and complementary therapies.
Expert Series: Associate Professor Nada Hamad on the importance of clinical trials
When talking to her patients, clinical haematologist and researcherAssociate Professor Nada Hamad always considers their eligibility for a clinical trial.
“If there’s a study that’s good for someone, I’ll advocate for them to get access to that,” says A/Prof. Hamad. Regardless of whether the right trial for them is available at her centre, St. Vincent’s Hospital in Sydney, or any other centre in Australia or the world even. And the reason?
“We know that patients on a trial do better than patients who are not.”
A/Prof. Hamad has a strong interest in clinical trials. She’s the Director of the Haematology Clinical Research Unit at St. Vincent’s Hospital, President of Australia and New Zealand Transplant and Cellular Therapies, and the former Chair of the Bone Marrow Transplant and Cell Therapies Group at the Australasian Leukaemia and Lymphoma Group (ALLG).
“One of the most valuable things as a haematologist is to participate in clinical research,” says A/Prof. Hamad.
“By developing research or delivering it, as a site that refers patients to other trials, or by participating in the research world, defining the agenda, and moving the field forward, because that is what is best for patients.
“And the research side of clinical trials is a very important arm of our treatment arsenal as haematologists.”
A/Prof. Hamad believes she brings her own “unique perspective” to the impact she has as a world leader in the field of bone marrow transplantation and cellular therapies (TCT).
“In this working environment, you don’t usually have people who look like me, and I believe in representation.
“I try my best to lead where I can and where I have something meaningful to contribute. It means I’m very busy, but it also means I have to be very smart about how I work and have efficiency in the things that I do.
“The transplant cell therapy space is an area that’s always been considered highly specialised because of how complex it is.”
She is “very grateful” for the specialty training she received at the University of Toronto at Princess Margaret Cancer Center in Canada.
“It gave me a different way of looking at the role of transplant and cell therapy. Once upon a time it was a treatment option when the patient had no other treatment options.
“A transplant doesn’t quite work the same way in everyone and it’s not as easy to deliver safely in everyone.
“Having the opportunity to study transplant in a very high-volume centre meant I got to appreciate and learn the nuances of managing different diseases with transplant.
“I got to see a lot of patients and learn how CLL (chronic lymphocytic leukaemia) transplant patients experienced this process compared to, for example, acute myeloid leukaemia (AML) patients. And I learnt that this treatment modality needs to be delivered in the context of what is available or becoming available in the therapeutic landscape.”
What is a clinical trial and what do clinical trials offer?
A/Prof. Hamad describes a clinical trial as “a study of treatments for a particular disease”.
“A treatment may be a well-established, in terms of how well it works and how safe it is, so the question of the study might be… how well does this established treatment work compared to some other established treatment?
“We call that a Phase III study which compares one option with another option.”
“The two options may be reasonably effective; we just don’t know which one is best.
“Those trials are fantastic because they offer patients clearly effective therapies, whether you’re on one side of the trial or the other. That’s what we call randomisation.
“Patients get a lot of benefit from the support of being on a trial as well. You’re getting the support of the research team, which does a lot of the heavy lifting, including organising appointments, supporting patients for travel, and making sure the patients are monitored very regularly and with great detail.
“A clinical trial offers a very high level of scrutiny and observation of how patients are doing on a study. This has to be rigorous, so patients on a trial often have better outcomes.”
“That’s probably because of the high level of care because it’s research and we need to gather very detailed information.
“In Australia, trials allow patients to access treatments that we know work but are not available on the Pharmaceutical Benefits Scheme (PBS) or are in the later stages of clinical trial research internationally and not available in Australia,” says A/Prof. Hamad.
There are other kinds of trials where the treatment has been shown to be effective and safe, but the effective drug dose, or the best dose to offer, may not be clear yet. These are called Phase I or Phase II studies, where A/Prof. Hamad said, “there’s still an exploration of the treatment strategy or the drug that’s being studied”.
“Those studies tend to be offered to patients who really have no other option, and access to a promising new treatment that could work for them when nothing else has been shown to work offers hope.
“That is one of my favourite aspects of clinical trials; being able to offer a lifeline in what sometimes can be a hopeless situation.”
A Leukaemia Foundation webinar, Understanding clinical trials, discusses the what, why and how of clinical trials to help you make informed decisions.
The role of clinical trials in progressing research
What people don’t realise, said A/Prof. Hamad, is the investment that is made in a clinical trial.
“It’s a very long process, making sure that the best minds in the world and the best science in the world come together to design and develop a clinical trial,” she explains.
“Often, we have sub-studies that run in parallel at the same time; new ways of diagnosing a problem or looking for biomarkers or blood test results that might give us a more accurate representation of what’s happening with the patient.
“So while clinical trials offer the patient an immediate treatment option, they actually provide the broader world of science and research, now and into the future, with more tools to deal with cancer, to improve the way we diagnose and the way we prognosticate and treat patients.
“There is a ‘greater good’ element that patients can contribute to, which is really quite immeasurable.”
“It’s the right thing to do for the future of the science that’s helping patients now.
“A lot of what we do now has come out of clinical trials, in terms of the kinds of blood tests we do, the diagnostic tests we use, and how we offer patients prognostic information.
“When a patient asks, ‘I want to know what I can get out of it’, I say, ‘CLL patients live with CLL for a long time and the research they participate in now may actually help them in the future.
“You’re really helping yourself in a bigger way when you have a longer-term disease like CLL by contributing to the research field which feeds into the bigger picture of how we treat blood cancers now, in the future, and forevermore. It’s part of history and it’s a very benevolent cause to be part of.
“Individually, you have a lot to gain by the detail that is required for clinical research. Every time you are in a study, the way that you’re examined by your physician, the blood tests that need to be done, have to be very detailed.
“The questions you get asked are documented rigorously, so nothing is left unasked, no stone is left unturned because for clinical research to be conducted well everything has to be extremely accurate and well-documented. That rigour should offer people a sense of confidence and accountability in how they’re being managed in a trial.
“The way clinical trials are supported financially means there are resources that sometimes we don’t have in the general healthcare system.
“We’re not going to pay you to be on a study,” said A/Prof. Hamad, but indirect financial support is provided to make sure patients are able to meet the requirements of participating in a trial.
“Not all trials will offer travel support, accommodation support, or carer leave support, but some trials do offer that because we understand how valuable that contribution to science is.
“The resources we direct towards trial patients tend to be well above and beyond what we have in the healthcare system outside of clinical trials.”
A/Prof. Hamad also emphasised that a clinical trial is not always the right thing for everyone.
“Not everyone who’s offered a trial should go on a trial. But if you have the opportunity, it’s really important to take it seriously and really consider it in collaboration with your care provider. Because the right decisions for you have to be the right decisions for you and not for a research study.”
Common misconceptions about clinical trials
A/Prof. Hamad said there were two misconceptions around clinical trials that she wished to dispel.
“The most common misconception is that people will be treated like lab rats, or they’re being experimented on,” she says.
“We’ve created such a rigorous level of oversight and governance and safety standards for clinical research conduct that the chances of that happening in Australia are essentially zero.
“And the international community has come together to develop principles and good clinical practice strategies to make sure that patients are never taken advantage of or exploited as has happened in past. The NHMRC and the medical profession take this very seriously.”
A/Prof. Hamad said another misconception is that patients often feel that if they decide or commit to a clinical trial, then they can’t stop or leave the trial.
“You can always exit a clinical trial,” she says.
“You can always decide it’s not the right thing for you – anytime, anywhere, at a drop of a hat. That is entirely the right of the patient.”
She also suggested that “with every trial, a patient talks to their clinician about what advantages it offers them, whether it’s directly or for the greater good, and what the patient’s rights are in the study, and what their obligations are”.
“Sometimes, a patient really wants to do a study for the hope it offers in terms of the treatment that it offers. For example, say you want to have CAR T-cells for CLL, and that doesn’t exist in Australia unless you’re in a trial.
“But if the burden of frequent visits and hospitalisation for the study are too hard for you to meet because you’ve got commitments to your family or the potential risks are unacceptable to you, then that trial may not be the right thing for you.
“So, the risk versus benefit to the patient and obligations and the rights of the patient within a study are really key components of discussions between a patient and their doctor,” says A/Prof. Hamad.
“It’s also important for us to support patients who are going through a clinical trial and to take as much time as they need to talk through everything and that they understand the information before they consent to participate in a trial.
“It’s about feeling comfortable with the decision to proceed.”
“To be honest, most of my patients jump at the chance. They are excited about it because they’re looking for opportunities and options, and I’d like to see more of that so patients understand that trials are a way that they can benefit and not a way that they are exploited.”
How do you find out about clinical trials you may be eligible for?
According to A/Prof. Hamad, there is no better advocate for you than your haematologist.
“That’s the right person to go looking for you because they know you with intimate detail and will be able to tell whether a study’s inclusion and exclusion criteria fit you or not,” she says.
“It’s much less efficient to go around asking multiple hospitals if you fit a study when you don’t really know the details of the study, but your haematologist will know you well enough to know what would be suitable for you or not.
“You have to ask them clearly, and say, ‘I am interested in clinical trials, I am willing to travel. Can you please find out what’s out there that I may be eligible for?’.
“And it’s important to let them know if you’re willing to travel, and whether you’re willing to travel to a different hospital or even interstate. Some patients even say they are willing to go international, so they would say, ‘please find out what is available for me anywhere in the world’.
“I do that for my patients because I’m the patient’s partner on their journey and I’m their advocate.”
“Most of my patients understand their disease, its stages, its severity, and what prior treatments they’ve had. They can do some of the research themselves if they choose.
“I’m very big on empowering patients to seek reputable resources for their education. There’s also clinicaltrials.gov, which is an international repository of all the studies in the world.”
A/Prof. Hamad said most international studies register with this website and there’s a ‘Search All Trials Here’ button on the homepage.
“If you enter a disease it will come up with all the studies available, their protocols, inclusion/exclusion criteria, and where they are being run, which is all public information.
“Obviously, local information is best, so asking your physician to help you find out what you would be suitable for is probably the best advice, but it doesn’t hurt, if you feel interested in pursuing other things, to go looking. But make sure you look at reputable sources.”
The need for more comprehensive patient data collection
Based on her academic work in intersectionality*, A/Prof. Hamad understands that sometimes there are at-risk groups that are invisible.
“I’m very focused on making sure that we’re inclusive of any form of vulnerability, and the way to do that is to think about what barriers to high-quality care might exist for individual patients,” she says.
“Even rural/regional patients are not all exactly the same. We tend to have a desire to homogenise vulnerable people; all women, all elderly, and all rural/regional.
“They’re not all the same. Some of them have more intersectional identities or vulnerabilities stacked up on top of each other that compound and make it very hard for them to get access to care.
“Some of my rural/regional patients are very financially stable, in fact privileged, so they can hop on a plane and come to St. Vincent’s Private and get the best and fastest therapy that they need. Some are not so I can’t really call them all the same.
“But what I can think about is making sure that healthcare outcomes are looked at with that lens.
“When we do an analysis of all the patients in a unit, and it’s very hard for us to do this kind of research in Australia, in my experience we’re not collecting that information in a way to help us make that analysis.
“For example, if you collect a patient’s ethnicity – if they’re Aboriginal or Torres Strait Islander – and you do an analysis, you might find out that they do better, or they do the same, or they do worse.
“But if you don’t collect that piece of information, you’ll never know because it’s in a big pool of data.
“What I’d like to see is a collection of data around a whole group of social determinants of health, including ethnicity, rural/regional status, gender, also financial status, literacy and migrant status, that are extremely important in a patient’s outcome.
“We know, from the literature and population health studies across the world, that for the best treatments we have available, some patients just can’t achieve those amazing outcomes.
“That’s a problem and we need to understand why that’s happening,” says A/Prof. Hamad.
“To answer the question around vulnerability, it’s really important to collect data and understand what are the vulnerabilities that we’re not seeing traditionally and start to proactively mitigate some of those risk factors, as if they were disease risk factors, because ultimately, they are.
“We know diabetes, and depression, increase your risk of a heart attack, so we try and manage those things.
“And we know your risk of getting a good outcome from your blood cancer is worse if you have certain social determinants of health characteristics, so we need to mitigate those also.
“I’d like a more concerted effort in our cancer plan nationally around that.
“I think that’s beginning to develop. The recent cancer plan identified the need to look at Aboriginal and Torres Strait Islander outcomes, and I’d like to see that grow a bit more so that we’re more inclusive of other potential social determinants of outcomes, so we can manage them as well.”
* Intersectionality is the acknowledgement that everyone has their own unique experiences of discrimination and oppression (gender, race, class, sexual orientation, physical ability, etc.) and offers a framework that focuses on the ways these multiple axes of inequality intersect and compound at macro and micro levels to produce a broad range of unequal health outcomes
Dealing with the emotions of clearing out a home after a loved one dies
Feelings of helplessness and confusion are common after losing a loved one and everything you need to do can be overwhelming.
On top of the rollercoaster of emotions during grief, the need to clean out the home of the person who has died, as well, can seem unsurmountable.
For those who have no choice in this situation, the following may help.
Read the will
While this may seem obvious, reading the will before you get started can be overlooked. What is stated in the will is not optional, it is a legal document that expresses the wishes of the decreased regarding distribution of their assets and personal effects.
Give yourself some time if you need to
Cleaning out a house within days of losing a loved one will only result in more grief and will make the process more difficult. Decisions around what to keep and what to give away or throw away, when everything has an emotional connection to the departed, can be challenging. Unless you are legally required to clean out and sell the house immediately, consider waiting a few weeks before getting started.
Ask for help
A sibling or close family member who also is grieving can be a good ally. They will understand the loss and can help you decide if an item has a real value or if you are sentimentally holding on to everything. Having one or two other people along to help you deal with the emotions can assist greatly.
Go through the big items first
Furniture, electronics, paintings or other decorations are less likely to have an emotional connection. Decide whether to keep, donate, sell or throw away items as you go through each room. You can use coloured stickers to mark your intention regarding different items. For example, red could indicate ‘sell’, so anything with a red sticker will need to be appraised or put up for sale.
Also, remember to go through everything before throwing items out. Many valuable items have been found in places where you might not ordinarily think to look, such as in the pockets of clothing, in books, old birthday cards, and filing cabinets. People have been known to place a substantial amount of money in different spots all over the house.
Start in the room that holds the least meaning for you
If the bedroom is where all the personal items are, begin in the kitchen or bathroom first and discard anything that has no sentimental value first. Old food or cleaning supplies and things like broken china shouldn’t be as difficult to remove. It helps if you give yourself permission to let go of things even though they were connected to a loved one who is no longer around.
Set items aside in piles
When you finally attempt to sort through the more personal items, such as clothing, art, jewellery or personal letters and paperwork, start by grouping similar items together. Also, don’t directly start throwing these things away or you may have regrets later. When things are grouped together, go through each pile, and keep only one or two items from each of them. And if you’re unsure about keeping or discarding something, put it in a box and store it away. After a month, go back to it and make a decision then.
Take a photo as a reminder
For any items that you need to give away or sell but that have a special meaning to you, take a photo of them. This means you can access them visually when you are wanting connection with your loved one.
Lastly, remember this is an emotionally draining time and, depending on family dynamics, can be fraught with tension and conflict. It’s a time when emotions are high and it’s important to take time to listen and try and understand the feelings of others while working out a compromise where possible. The last thing anyone wants to do is to lose family members over what is essentially ‘stuff’.
Grief is very much part of our lives – it’s not something separate and it’s not just about dying or death, it’s around endings, according to psychotherapist, Dr Stephanie Thompson.
“There are lots of endings in our lives, within our relationships, at work, or different life changes,” she says.
Grief, loss, and bereavement support are among Dr Thompson’s clinical areas of interest. She is based at the Tasmanian Specialist Palliative Care Service in Hobart and has a private practice with the Hobart Counselling Centre where she is also a psychotherapist, hypnotherapist, registered music therapist, mediator, clinical supervisor, and researcher.
“When you are recently bereaved, it’s the shock that there can be a way forward, when at the time it feels like there isn’t, and when it feels like life will never be the same again,” she explains.
“Life won’t be the same again… it’ll be different.
“What we do is we learn to live around our grief.”
“The grief is very much part of us, but we have to go through these grieving experiences, not discount them, or get rid of them, or bury them somewhere.
“You still have a relationship with the person who’s just died. It’s a different relationship. They’re not gone from our lives completely. We can still talk to them, we can still include them, but we include them in our mindset.
“Suddenly, it’s dealing with the empty chair that’s at the table. It’s very different, so we learn how to start doing things differently… cooking for one, going to things on our own, and it’s coming to terms with loneliness.
“The most important thing is to still savour the routine. We still have a routine, we’re still getting out of bed every day, still having breakfast, still having lunch. It’s maintaining that routine so we’re maintaining ourselves because it can feel like we’ve died as well, but we’re still here.”
Dr Thompson describes grief as a wild tiger – “some days we feel okay and other days, we think goodness, where did that come from?”.
“There’s always a memory, and memories can be triggered by scents or images or music.
“We feel like we’ve seen the person we love in the street, and it can take our breath away.”
Dr Thompson says that life also can feel very slow, as if it’s almost stopped a bit because everything’s just changed. We’re not sure how things are working again and what it’s going to be like.
She emphasises what helps is acknowledging ourselves in some way every day, whether it’s having a hot bath or going for a walk or buying a bunch of flowers or having a nice meal.
We may have lost someone we love and we may have done a lot of caring during their treatment, which is exhausting. We don’t have to be the carer anymore, we become the person that we need to care for.
“Often when we’ve been caring, we’ve ended up having to take a back seat because there wasn’t time for anything else. We need to put ourselves in the picture if we can,” says Dr Thompson.
“That can be quite a hard thing to do, to suddenly make ourselves a priority.”
Dr Thompson said people who are grieving are feeling “many complex emotions and are usually feeling quite stuck, very lost, or trapped, and sometimes they’re not sleeping”.
“They may have tried many different things, and music therapy may help because it’s so different.
“It can be beneficial as a form of psychosocial emotional support because it’s such a creative process.”
To find out more about the healing power of music therapy, read our Expert Series article in which Dr Stephanie Thompson delves deeply into how music is used to actively support people of all ages to improve their health, functioning and wellbeing, to manage their physical and mental health, and enhance their quality of life.
“Music is very much part of our lives” and that’s why it’s such a useful and effective tool in therapy, according to Tasmanian registered music therapist, Dr Stephanie Thompson.
“Music is a different language, and music therapy is like having a conversation, but we use music instead of words,” explains Dr Thompson, who is also a highly qualified psychotherapist, musician, hypnotherapist, and researcher with the Tasmanian Specialist Palliative Care Service, in Hobart, and the Hobart Counselling Centre.
Dr Stephanie Thompson: “There’s absolutely no need to be musical to take part in music therapy or to benefit from it”
Music therapy is a form of psychosocial and emotional support for a wide range of people, from those recently diagnosed with a blood cancer or going through treatment through to the recently bereaved. Many others benefit from music therapy too, including children with disabilities and people with dementia.
“We can get stuck with words, and the beauty of music is that it’s another, creative way of expressing how we feel.”
“It’s therapy using music and people don’t necessarily think about it as an option. They tend to think, ‘I can’t do that because I’m not a musician’ or ‘I don’t really like music’, or ‘I can’t play an instrument’.
“That’s not the case at all. There’s absolutely no need to be musical to take part in music therapy or to benefit from it.”
Playing an instrument, songwriting, a calming background to enhance sleep, a guide to somewhere peaceful in our mind, even avoiding a tune that triggers a strong emotion. These are all forms of music therapy which Dr Thompson says, “isn’t a new thing”.
While it didn’t emerge as a profession until the 1940s-50s, music therapy dates back to ancient Egypt hieroglyphs and has been used through the ages to heal.
“Often the shaman was a musician and would use music to heal.”
In the mid-1850s, doctors noted significant results in the recovery of patients injured in the Crimean War after musicians played to them in London hospitals. Later, during World War II, when music was used to treat returning servicemen suffering from shell shock and complex trauma, they experienced a sense of calmness.
“There’s plenty of credible evidence-based research to illustrate the efficacy of music therapy.”
Music motivates, persuades, and is emotive
“Music can be a really good motivator and it can be very persuasive,” says Dr Thompson.
At the gym, people work faster and harder on the equipment as the speed of the background music increases, and when driving, hearing a tune we really like can motivate us to press down on the accelerator.
We learn advertising jingles because we hear them over and over again, and in films, a change in the music score can signal the baddies are coming or a love scene.
“And music is very emotive – that’s why it’s useful in therapy, because everybody can relate to it, and because the brain is multi-wired, we can still respond to music, irrespective of having an illness or injury.”
In mourning, in pain, or in emotional distress, music therapy can help them to feel differently, says Dr Thompson
Music as a form of therapy
Music therapy can reduce a range of conditions including loneliness, anxiety, depression, insomnia, agitation, restlessness, even wandering, and it can be used to improve speech, memory, and language.
For someone who has tried many other therapies, Dr Thompson said music therapy may help because it’s so different.
A music therapist works as part of a multidisciplinary team, just as an occupational therapist does, or a physiotherapist, or psychologist, attending multidisciplinary meetings and providing feedback.
“We use music to actively support people of all ages to improve their health, functioning and wellbeing, to manage their physical and mental health, and enhance their quality of life,” says Dr Thompson.
She uses music therapy differently in different clinical settings and because of the dynamic nature of this intervention, Dr Thompson works with whatever is going on with a person at the time, and how well they are too.
“My music therapy practice interventions in grief and bereavement and in palliative care are very different to how I would use music working with a child with special needs, because each of their needs is different.
“If somebody is recently diagnosed or recently bereaved, my role is to spend time with them, in the clinic, at the bedside or in their home, and I find out what’s going to be useful for them.”
For those in mourning, in pain, or in emotional distress, music therapy can help them to feel differently.
“It can be calming, it can soothe us to sleep at night, and it can give us a bit more control. And for those going through treatment, music therapy can reduce nausea and vomiting.”
Music therapy is a creative process and there’s no sense of getting it wrong. It’s a fluid practice with many different interventions and ways of working. And, during a music therapy session, which may vary in time from 10 minutes to an hour, the silence can be just as important as the sound. Listening is really key, said Dr Thompson.
The violin is Dr Thompson’s principal instrument and the piano is her second
Stephanie Thompson’s training to become a registered music therapist
Music therapy is live music “because it’s dynamic… it’s in the moment”, it’s not pre-recorded.
Therefore, Dr Thompson says, “you need to know something about music before you can even think about training as a music therapist”.
“To do music therapy, you need at least grade eight standard in one instrument and grade five in a second study instrument.
“Violin is my principal instrument, and the piano is my second.”
Everyone in Stephanie’s family plays an instrument and she was seven when she first picked up the violin.
She began a music degree at the Conservatorium of Music in Hobart before transferring to the University of Melbourne where she could combine music and psychology – something she’d always wanted to do. After completing the four-year degree in music therapy, a scholarship took her to the UK, with placements in London and Hertfordshire before doing a master’s degree in psychotherapy.
When Stephanie returned to Australia, her PhD combined music therapy and psychotherapy with research focused on women living with breast cancer.
Instruments and interventions used in music therapy
Dr Thompson feels the rewards of being a music therapist every day.
“It’s a privilege being with somebody and providing sessions for them because I know it’s never easy for them to come into the room or to allow me into their space.
“And it’s a privilege to support somebody at such a delicate time.”
“Anybody can benefit from music therapy if they’re willing to give it a go because we can all respond to music,” she explains.
The chord harp has a scale that’s easy to use
“We use a number of different instruments and use different musical scales, and a pentatonic scale [a musical scale with five notes per octave] is commonly used which allows people to improvise feely. As it doesn’t matter how they’re played, you can get satisfaction and achievement from being able to play an instrument.
“Even if you don’t have a background in music, you can still make a sound and play something.”
Dr Thompson has adapted the chord harp for music therapy by removing the bars and tuning it to a scale that’s easy to use.
“When patients play the chord harp they can also feel the vibrations in their legs, which is really important if they’re bedridden or for someone who feels disconnected from their body,” she explains.
“We can use elements from nature as well, like leaves, feathers, rocks, and stones to create a particular soundscape to depict and externalise how someone’s feeling.
“What I do, as a music therapist, is encourage my patients to play and then I play with them. It’s like having a conversation but it’s a musical conversation, and it’s improvised.
“I think sometimes we can get really caught up with trying to find the right word. By being creative we can bypass that and get to the core of something.”
A music intervention Dr Thompson uses is music and imagery, and she gave an example, working at someone’s bedside.
“I play my guitar according to their respiratory rate, then manipulate the music to bring a person’s breathing rate down to a deeper level, that allows the music to guide them, so they can travel in their mind to somewhere that’s peaceful and beautiful.”
Other interventions include music and movement which can be used to improve a person’s gait (their walking pattern), a musical life review looks at songs and recording memories, and there’s composing, which is writing music.
For people who are bereaved, Dr Thompson said memory recall can unpack some of their memories by encouraging them to catalogue the music that was significant to the relationship they had with the deceased person by recalling significant events and the songs that went with them, or that person’s favourite music.
“It’s like having an anthology of the relationship with living sound. It can be quite comforting at times and it’s another way of sharing what we know about that person with other family members.”
Externalising our feelings through songwriting
The purpose of music therapy as a psychological intervention differs according to the different clinical populations Dr Thompson works with.
“In palliative care, working with people who are in pain, it’s to help reduce their pain. If they’re feeling emotional distress, it’s to help them to externalise and process what’s happening to them.
“Sometimes words can feel like they get in the way but by externalising something through music, we get to the core of it and we’re able to have a sense of relief in another way.
“Songwriting enables people to externalise their own feelings or how they feel for someone else by putting them into a creative artform.”
Dr Thompson does a lot of songwriting with people who are grieving, which she says, “can be very powerful” for them.
She helps them create a song about how they are feeling now, what they remember about their life with the person who died, their love for that person, and their relationship now.
“For me, it’s such a privilege to be somebody’s voice, and for the person I’m working with, it can be quite transformational.”
Dr Thompson shared an example of the songwriting process and outcome for a man whose daughter was dying. He was feeling helpless because he couldn’t change what was happening with her health and he was grieving about not seeing her grow up.
“The song he wrote was about his hopes and wishes for her and his love for her.”
“We had several sessions together. He would cry a lot, then he’d talk to me about her – what she was like, what she loved, and what they liked to do together.
“I’d write down everything he said, then read back and ask, ‘what’s the most important thing that stands out for you?’
“We organised the words he mentioned and grouped them into phrases, and he decided on the musical style he wanted.
“It was very much his process. He shaped the whole piece,” she explains.
“To finish, I played it back to him, made any changes he wanted, then I recorded it because he found it too hard to sing.”
When he listened to the recording, it was his voice he heard about what he wanted and his wishes for his daughter, and he asked Dr Thompson to sing it on his behalf at his daughter’s funeral because he wanted his words to be heard for his daughter.
“It isn’t ever easy to sing at someone’s funeral, but it’s an enormous privilege and I make sure I rehearse a lot,” laments Dr Thompson.
How music therapy can help
Music therapy can help so many people because most people can respond to music in some way which can be useful.
“When we’re deep in grief, we’re more sensitive to everything around us – to songs, sounds, scents – and almost everything reminds us of that person,” said Dr Thompson.
“With music we can have a bit of control and take care of ourselves when we know we don’t want to listen to some pieces of music because they’ll transport us back to somewhere we’re just not ready to go to yet.
“If we can’t sleep at night and it feels very lonely, music can help us with our breathing, in terms of relaxing and filling in that silence. If we can find a piece of music that’s soothing in terms of its meter and has a regular structure, it can have the effect of being quite calming.
“The reason I play something repetitive is that music tells a story, and we listen to where the story is going. When music is repetitive, you don’t have to listen to what’s happening next in the story so you can feel you’re in a safe environment, in a space that’s completely contained, and just relax and give in to the experience.
“And if I’m working in somebody’s house, I’ll say, ‘I’ll let myself out’.”
“There may be other family members in the room as well and everybody can just be in that space together without the need to say anything, just closing their eyes and having an experience of being supported.
“Often, if people are in pain, they’ll notice the perception of their pain changes too.”
For someone with a neurological impairment, Dr Thompson said music therapy can improve memory. She shared details of a person she is working with who has advanced Alzheimer’s disease, who can’t dress themself or make a cup of tea and has forgotten where they live.
“They are not able to care for themself but can still play their harp. Each week, when I see them, they’re able to focus for a whole hour and improvise [on their harp] and initiate and express themselves. That is meaningful for them because they feel that they’re a functional human being.
“They know who I am, they know who their relatives are, and the ongoing effect lasts for several hours afterwards.
“That has an impact on the family as well. They see this person coming to life; they’re suddenly back again.”
Find a registered music therapist
Music therapy is an evidence-based allied health profession. You can be referred to a music therapist by your GP, another therapist or you can refer yourself. There are more than 300 registered music therapists in metro and regional/rural areas across Australia. A directory of registered music therapists is available on the Australian Music Therapy Association’s website: austmta.org.au.
Lorie and Troy were on their way to the GP for results – hours later Lorie was in ICU
In February 2021, Lorie Sarson was diagnosed with anaplastic large cell lymphoma (ALCL), putting her and husband Troy in immediate financial distress due to treatment and transport costs.
Lorie Sarson and her husband Troy Broadhurst
Navigating a blood cancer diagnosis was not how Lorie Sarson and Troy Broadhurst expected to begin their 2021.
At the beginning of the year, Lorie was experiencing symptoms of depression and visited her GP to apply for a mental health plan.
“She wanted to do a blood test and mentioned that I didn’t look physically well at all,” says Lorie.
“I was meant to return the following week for the results, but we never made it back. She met us halfway [between the clinic and home] and said ‘get to the hospital’.”
Just like that, Lorie and Troy found themselves navigating a shock blood cancer diagnosis as they made their way to the Bendigo Cancer Centre.
Hours after a routine visit to the GP, Lorie found herself in intensive care.
After Lorie was stabilised, she was moved into a different ward to begin chemotherapy. Eventually, Lorie and Troy faced a 40-minute commute to and from Bendigo several times a week for treatment.
“We found ourselves needing to commute from Inglewood to Bendigo quite regularly, which is nearly 90 minutes up and back. It became very difficult,” says Troy.
They eventually found a rental property in Bendigo so they could be close to the hospital. However, while their problems were eased logistically, rental costs loaded more financial pressure on.
Lorie needed to receive further treatment at Melbourne’s Peter MacCallum Cancer Centre, increasing travel to and from appointments.
“We just managed to get a house in Bendigo which was close to the hospital, and then we found ourselves needing to do trip after trip to Melbourne for stem cell harvesting,” says Troy.
Lorie and Troy at a family lunch just days before commencing treatment
Lorie and Troy found themselves needing to put another roof over their heads in Melbourne, that’s when they were referred to the Leukaemia Foundation.
“Peter Mac wanted us to stay in Melbourne, and that’s when the Leukaemia Foundation really got involved,” says Troy. “They found us accommodation and organised fuel vouchers for us. Without that help, I wouldn’t know what we would have done. There’s no way we could have paid for rent in Melbourne.”
Fuel vouchers eased the financial burden for Troy, who was still living in Bendigo for work. He needed to travel to and from Melbourne every two days.
Having a Blood Cancer Support Coordinator from the Leukaemia Foundation proactively reaching out made a huge difference.
Lorie and Troy after Lorie’s stem cell transplant at the end of last year
“We hate asking for help,” says Lorie “If people ask us how we’re going, we just say ‘yeah good, thanks’. That’s why Jo from the Leukaemia Foundation was such a big help. She was constantly messaging and reminding us that the Leukaemia Foundation was there for us.”
Jo provided much needed emotional support for the couple, helping them navigate the heavy mental toll.
After undergoing a stem cell transplant in November 2022, Lorie is in remission.
When asked about what they’re expecting for 2023 and beyond, Lorie’s answer is simple.
“To be a lot better than the last four years,” she says.
“Our whole attitude and outlook [on life] has completely changed over the last 12 months. We’ve just been grateful for every day that we’ve been given, and now we’ve got a grandchild! We’re doing things for us for once, not for everyone else.”
After experiencing how valuable and life-changing emotional support can be for somebody experiencing hardship, Lorie and Troy have decided to give back to the industry that helped them. They are both commencing Certificate III in Community Services.
“We want to give back and support other people that are going through not only cancer, but any mental hardship that we’ve had experience in,” Troy says. “We’d like to help other people get through what we got through.”
Do you or somebody else require support from the Leukaemia Foundation? You can connect with us by filling out the below form, and a Blood Cancer Support Coordinator will be in touch.
If you or someone you know is living with blood cancer, please fill out this form.
Healthcare professionals wanting to refer a patient, please complete this referral form.
In her grief, Nerys is finding “little bits of joy” again
For Nerys Welch, “grief sucks” in so many ways. And she says, “it never goes away”.
She will always miss her late husband, Richard, who she affectionately calls Rich, and not just in the past but in the present.
“This photo is of me, Rich, and our dog, Casper in 2004 in Broome, WA, when we spent 2½ years living in a caravan travelling around Australia, before kids”
“You miss that they are not there, at all future events,” Nerys explains.
Special days, anniversaries, and birthdays “are really rough but sometimes it’s the things you don’t expect to hit hard, like signing Christmas cards without his name and it just feeling wrong”.
For Nerys, it’s also waking up every day and remembering her husband is no longer there. It’s having a nightmare about waking up alone and realising the nightmare is actually real. And when the calendar year changes, “you realise you are living in a whole new year that they never lived in”.
Decision-making is hard for Nerys without her Rich there to talk to and having “widow brain fog makes it hard to think or concentrate”.
“We’ve got three kids who are now 16, 15, and 13. They all have special needs – different types of autism, and I’m their full-time carer,” says Nerys.
“I’ve got no family around and I also home-school them, so it’s full-on. My life’s crazy.”
“All of us in 2017, on our block in Bauple where we have built the house the kids and I now live in”
Her husband’s diagnosis with blood cancer and years of treatment
Richard, who was diagnosed with T-cell acute lymphoblastic leukaemia in mid-2012, was “very sick for many years” and had a lot of complications.
“For the seven years until he passed away, we were always going to the hospital,” says Nerys, and there was only one point when his appointments got down to being a month apart.
She never thought he wasn’t going to make it, so his sudden death in Brisbane in August 2019 was a “massive shock”.
“It was so unexpected and at that point I was exhausted, I was a zombie,” says Nerys about what turned out to be Richard’s final time in hospital in Brisbane.
He was there because he needed special permission to access a new medication which hadn’t yet been released in Australia. While Richard was being treated, Nerys and the children were living at the Leukaemia Foundation’s Clem Jones-Sunland Village. The family hadn’t been home to Bauple (three hours north of Brisbane) for three months.
Jaguar, Cougar, and Cobra during a visit to see their dad, Richard Welch, when he was in hospital in 2019
Two weeks after starting the drug, Richard’s haematologist told Nerys that “it wasn’t looking good”.
“It was the first time there’d been any mention that things were not going to turn out well, and that maybe in the future they’d have to start thinking about palliative care,” says Nerys. But Rich just kept getting worse.
“I was in shock when he passed away [four days later] and being at the leukaemia village was good. The people there are amazing. They helped with practical stuff – working out who I had to contact, and just as a support.
“Rich was cremated, and they let me stay another two weeks until I got his ashes so we could all travel home together, which was really nice of them.”
For Nerys, who was sleep-deprived, this extra time in Brisbane gave her the ability to sleep a lot and to pack up and get sorted before going home.
Living regionally with blood cancer
Before Richard’s diagnosis, when the Welch family spent Christmas 2010 at a friend’s place in Sydney
Nerys said the family had lived “in the middle of nowhere” near Goondiwindi prior to Richard’s diagnosis.
“When he got leukaemia, he was like… ‘we’ve got to move somewhere better, somewhere closer to Brisbane’, but we didn’t have much money,” says Nerys.
Richard was a builder and in 2016 the couple bought a block of land at Bauple. They moved there and lived in a caravan while they built their house themselves.
“When Rich died, the house wasn’t finished. It wasn’t anywhere close to liveable,” says Nerys, and it took her two years to complete the build, thanks to money raised through GoFundMe.
“Obviously there was a lot of stress. I don’t really remember those first few years. You’re just in survival and your brain doesn’t work. It’s this fog, and it takes a long time for that fog to lift. You’re surviving and a lot of it is blurry.
“I just focused on getting the house done so we could move in. I had to keep going and I had to look after the kids; none of that day-to-day stuff changed, so I wasn’t able to fall apart,” she says.
“I definitely had crappy days, butI haven’t had the full-on bawling-your-eyes-out-for-days thing because I haven’t had that chance.”
“In some ways, I feel like that’s still got to come. I’ve got to feel the feeling, if that makes sense?”
In 2012 when Richard was having treatment, the family stayed together at the Leukaemia Foundation’s Clem Jones-Sunland Village accommodation centre in Brisbane
Moving in and moving forward
Finally, in mid-2022, Nerys and the children moved into their new home.
“Now I’m just starting to be able to concentrate or think, and to feel a bit more human.
“I’m connecting with other people, with other widows, and it’s good to start that process.
“Now I can actually read a book again and I’m reading more books about grief, which have been really helpful. And I’m starting to focus more on what I need, rather than just pure survival.”
Late last year, Nerys took part in a four-week Bereavement Support Group that was presented and facilitated on Zoom by the Leukaemia Foundation.
“There were about 15 of us and we’d all lost someone to blood cancer. The first week we talked about how our person died, the second week we talked about what they were like, and we all brought a photo, which was really cool,” says Nerys.
“My duck Marvin on Rich’s urn. He lights up and keeps me company”
“The hardest thing I’ve found, as time’s gone on, is that nobody talks about him [Richard]. People don’t mention his name. And we all felt the same – it was just so precious to say their name, show a photo and share stories. It meant so much and that was my favourite session of the four.
“In the third week we learnt more about grief, and the last one was about self-care and what the future could look like,” says Nerys.
“It was really good because we all had the connection of grief, but the connection of the blood cancer as well.”
“That’s the biggest thing that’s helped me – having contact with other people who get it, because you just feel so lonely and you’re the only person who’s in this weird, messed up world and everyone else is carrying on as normal.
“But then when you go to that [support group series] and you hear others’ stories. Everybody’s different and everyone’s coping differently and there are little bits from each person that you can connect with.
“At first you feel like, oh I can’t go to this, but you participate as much as you want to. There’re people who don’t talk much and who listen, and you get a lot even if you just listen to other people, or you share stuff if you want to.
“It’s a really safe place where it’s okay to cry and it’s okay to be happy. You’re not being judged, and you can say something, and people already get all that background stuff.”
Richard’s urn: “the kids chose the colours and photos and what went on it so it represented him. One of the photos on the top is of a painting Rich did.
“So, if you say, ‘the tap was leaking and I fixed it’, people get how huge a deal that is. You don’t have to explain… ‘my husband died, and he always did this’… they already know all that. So yeah, it was great.”
“Bits of joy” are appearing again
Nerys is starting to feel more functional and more able to process her grief.
“The fog is lifting. That’s the biggest thing that’s changed, and now I can connect with other people and I’m more confident and capable in myself to go to a Zoom meeting and interact with others.
Joining an online widow’s book club was something that wasn’t essential and wasn’t for the kids. It was something she wanted to do, and Nerys described that as a big “widow win”.
“Actually choosing to do something that I would get enjoyment out of was a huge step.”
“That’s where I’m at. I’m starting to look at life, like… okay, there can be bits of joy in it. I’m still sad, it still sucks, but I can find little things that make it just a little bit better. You’ve got to grab those when they’re there.
“It’s like… this is now my life – he’s not coming back. It takes a while to sink in, to be able to process it all.”
Having Daddy-themed days together
Nerys said she and her three children are really close, and while they are all different in how they are each coping with their father’s death, they love talking about him. And when birthdays and anniversaries are coming up, they sit down together as a family and make plans.
“Everyone gets to say what they want to do or don’t want to do, then we work it out together. It’s good to be open and honest and to have those discussions,” says Nerys.
Daddy-themed days are a favourite – it’s a day at home doing daddy things.
“We get food that Daddy likes, the fizzy drinks Daddy likes, we have a meal he likes, and watch a movie he liked or play on the Xbox. We love doing that and talking about him,” says Nerys.
“And they’ll bring Daddy out.”
Nerys is referring to the custom-made urn that contains Richard’s ashes. She and the children chose the colours, photos, and a piece of Richard’s artwork that decorates the wooden box, to represent him, and it has its own little cushion.
“He comes out and watches the movie with us.”
Advice to other people who are grieving
Nerys says, “there is no right or wrong way to grieve”.
“Whatever you need to do to help you get through that day, that hour, that minute, that second, is the right thing to do.
“If you need to be distracted and to keep busy, or if you need to sit and look at the photos and cry, nothing is wrong, nothing’s right. It’s whatever works for you and what works for your family,” she says.
“And for other people who are trying to help [someone who’s grieving], it’s not a problem to be fixed.
“You can’t make it better. You can’t make it go away. You can’t change it. But you can be there for that person. If they’re sad, just sit with them, listen to them. If they want to be distracted, help them be distracted, but do what the grieving person needs at that time, not what you think they need.”
Grief-based resources that have helped Nerys
On Facebook, Nerys joined the Widow Wives Club, which has an unofficial mascot – a duck-shaped lamp called the ‘Existential Crisis Duck’.
“I bought one and it’s ridiculous, but it brings me comfort because I can look at it and know other widows are out there with this duck… it’s that connection, and it helps.
“It’s my little buddy now. I’ve named him Marvin, after the robot from The Hitchhiker’s Guide to the Galaxy, who’s always really miserable. It’s adorably cute but just looks so sad, which sort of sums it up.
“Being a mum of kids with autism, when I talk to other parents of kids with autism, you’ve got that connection and it helps. Grief is no different. It’s finding the people that can help and each group is different.
“You’ve got to try different groups and find the one that fits with where you’re at in your journey,” Nerys suggests.
“It’s the same with books on grief. If I’m in an angry kind of feeling of grief, I have a certain person whose podcast I’ll listen to, and I’ll read their book because it’s simple and it just works for me.
“And then, if I’m feeling a different way, I’ve got others, so it’s finding things that work for you in the different emotions you get.
“Honestly there are so many books, podcasts, and groups, so it’s a matter of trying different ones and finding what makes sense for you at that moment in your journey.
“Some helped earlier and some help more now, and some just depend on what kind of day I’m having.
“Here are some, in no particular order,” offers Nerys.
Widow we do now? and Widow Wives Club. “They have a Facebook page and an app with everything in one place which is very helpful – podcasts, music, and monthly Zoom hangouts.”
Modern Widows Club. “Also on Facebook, and the website has a lot of Zoom meeting options for meeting other widows, a monthly book club and art club, and other groups, and a virtual group too that meets online monthly.”
My Person Died Too – John Polo. “A podcast he does with an Australian grief coach. He has written a few books and has a Facebook page.”
David Kessler. “He has written books, has a Facebook page, podcasts, and has virtual meetings with others but you have to pay, so I haven’t tried that part.”
Refuge in Grief – Megan Divine. “Has a website, Facebook group, and a book, It’s OK that you’re not OK. This was the first book on grief I got. I found it hard to read because I couldn’t concentrate at the time but the biggest thing that helped me was the statement, ‘grief is not a problem to be solved’. That helped me a lot in the early part because everyone wants to fix you, they want to fix this problem, but grief isn’t something that can be solved.”
There are Australian-based Facebook groups run by other widows. “You just have to try and see what works”, and the Leukaemia Foundation’s Grief and Bereavement Community on Facebook.
Increased melanoma risk in CLL patients means regular skin checks critical
People with chronic lymphocytic leukaemia (CLL) have a sizeable 600% higher risk of the most dangerous form of skin cancer, melanoma, researchers have found.
As a result of this discovery, data from several international research studies recommends clinical teams caring for CLL patients actively monitor for melanoma as part of routine care, so skin cancer is identified early and managed with targeted therapies.
Management of melanoma in patients with chronic lymphocytic leukaemia
The most likely cause of CLL patients being more susceptible to melanoma is their suppressed immune systems, according to haematologist, internationally recognised researcher and CLL expert, Dr Clive Zent, from the University of Rochester Medical Center in the U.S.
“Normally, in people with healthy immune systems, malignant skin cells might be detected and destroyed before they become a problem. But in CLL patients, failure of this control system increases the rate at which cancer cells can grow into tumours, and the likelihood that they will become invasive or spread to distant sites,” said Dr Zent.
He was commenting on a study by a Wilmot Cancer Institute scientific team, which he led, that discovered a 600% higher risk of melanoma in a large group of people with CLL when compared to a similar group of age- and gender-matched people from the general population. The study results showed 22 melanomas diagnosed among the cohort of 470 people.
Although a higher risk of melanoma had been shown, this study (published in Leukemia Research in 2018) was the first report of analysis of detection rate and treatments among CLL patients.
Risk factors for skin cancer and solid tumours in newly diagnosed CLL and the impact of skin surveillance
The following year, an article published in Leukemia & Lymphoma on a retrospective Canadian study of 587 newly diagnosed CLL patients found they were four to five times more likely to develop aggressive skin cancers one year after their CLL diagnosis. Skin cancer was developed in 28% of the study cohort – about a third before being diagnosed with CLL and two thirds after their diagnosis.
The first skin cancers began to increase five to six years before the CLL diagnosis but continued to increase after diagnosis. There was a disproportionate increase in the rate of melanomas (four-fold) and squamous cell carcinomas (five-fold) compared to a three-fold increase in basal cell carcinomas.
The researchers said the increased number of skin cancers was a result of the haematological malignancy (CLL), demonstrating the immunosuppression that predisposes these patients to skin cancer is present prior to the diagnosis of CLL.
Men aged 70 or older, and receiving chemotherapy, were predictive factors for the development of skin cancer.
The study also found 27% of CLL patients developed a solid tumour including breast, prostate, lung, colon, and bladder cancers. These cancers were the major cause of death during the seven-year follow-up period, ahead of CLL and infections.
Development of a skin cancer did not increase the risk of developing a subsequent solid tumour and only 10% of patients developed both.
Chronic lymphocytic leukemia, skin and other second cancers
Commentary on this research by Australians, Professor Stephen Mulligan, Associate Professor Stephen Shumack, and Associate Professor Alexander Guminski, said immune failure in CLL leading to infection and second malignancy arguably now limits overall survival more than the CLL itself.
They said CLL patients at Royal North Shore Hospital (Sydney) have a higher rate of mortality from non-haematological malignancy than from their CLL.
“As the survival from better CLL disease control improves further, second malignancy will likely become an even more dominant factor for long-term survival for a higher proportion of patients, and it will require more focus from the CLL community.”
They noted the different UV exposure in Canada compared to Australia, and said, “In Australian CLL patients, this translates into an NMSC [non-melanoma skin cancer] mortality rate 17 times that of the general population”.
In response, combined CLL and dermatology clinics “provide an ideal environment and opportunity to educate patients regarding the need for strict sun avoidance as well as their regular surveillance, and rapid, multidisciplinary intervention when skin cancer occurs”.
The risk of melanoma in patients with chronic lymphocytic leukemia; a population-based study
A more recent population-based study of the risk of melanoma in CLL patients included patients diagnosed between 2000 and 2015 and registered in the Surveillance, Epidemiology and End Results (SEER) database of the U.S. National Cancer Institute.
According to the research paper published in the journal, Current Problems in Cancer, most of these patients were males (77.6%), white (98.2%), married (62.2%), and aged between 65-84 years when diagnosed with CLL.
Of the 48,876 CLL cases reviewed, 474 developed a second primary melanoma of the skin. The increase in melanoma risk was higher within the first five years following CLL diagnosis and it was higher in males compared to females and in people aged 45-64 years. Analysis also showed that of the 7827 CLL patients receiving chemotherapy, 70 later developed melanoma.
It was noted that out of 1048 CLL cases observed in Asian patients, none of the cases was later followed by a melanoma.
The study concluded that CLL increases the risk of developing melanoma, so it is crucial to keep rigorous screening, high-suspicion, and close follow-up for recurrence in consideration while managing these patients.
Also, that further research is required to better understand how immunosuppressive agents and immune-modulating biological medications affect the course of treatment and to assess the need to reduce these drugs in certain settings.
Acknowledgment: the limbicwas a source of information for this article.
Patrick Griffin during a train trip on the Royal Scotsman train in 2009
I was 59, a managing director of an international luxury hotel company, and not willing to face my mortality.
I was fortunate that I had an annual health check, which discovered the CLL. Being rather cavalier and told no action was required but to wait and watch, I continued with life as if there was nothing wrong. And I listened to the comment of a friend, “if you must get cancer, this is the best one to have!”.
On this positive note I started out feeling there were others a lot worse off than me, and that with the continual advances in medicine there had to be something that would help to control the cancer. This has come to pass, and in the meantime, staying positive and cheerful was the finest medicine of all.
Then in 2008 I was also diagnosed with prostate cancer. After a radical prostatectomy and being told I was in remission, I was hopeful of convincing myself I was cured of that cancer, which has turned out to be true.
The CLL started becoming more active in 2011. Again, I treated it as a matter of mild concern but felt that, at the age of 65, it was time to retire. I moved to Thailand to fulfil a dream of building my own small luxury hotel on the banks of the Mekong River.
Every three months, I kept a check on my bloods, but after about 12 months I became seriously ill and was admitted at Bangkok’s leading hospital. As I had no health insurance, it was agreed that I should return to Australia, so I left Thailand and went to Perth, being the closest city, and it was fortunate I have a sister living there.
Patrick, earlier this year, with his family who he says “have all been very supportive”
On arrival I went to the ICU at Sir Charles Gairdner Hospital, under the care of Dr Julie Crawford. It was September 2012, I was diagnosed with diffuse large B-cell non-Hodgkin lymphoma and the prognosis was not good – I was given eight months to live!
I had a lot of treatment, and the first six cycles of chemo included a spinal injection of methotrexate. Then, due to the headaches I was having in December that year, I had a scan which showed blood around the brain. It was a chronic subdural haematoma [one of the most common neurosurgical conditions] and I had bilateral burr hole drainage [a procedure where small holes are drilled in the skull to drain the haematoma].
Patrick’s hotel, Amoon, while under construction in Thailand in 2012
At this time, given my prognosis, it was suggested that I consider a bucket list. And, as I listed things that friends who had sadly faced similar situations had selected, I realised just how fortunate I had been. Instead of a bucket list, I decided to write ‘the’ book – an autobiography – that many people think of doing, but rarely do, and this proved to be so cathartic.
Nine months later, in May 2013, the lymphoma was in remission. Obviously, the amazing treatment I received in the hands of Dr Crawford and her team must be given the credit. But more than this, I believe the writing down of all the wonderful memories of people, places, and events that I had been fortunate to encounter in my life to date gave me such a positive feeling that this was not yet ‘the time’. There was still much to do, and this was confirmed by my recovery.
In 2015, Partrick and Gan were married
In December 2017 the CLL returned, and again Dr Crawford worked her magic with more chemo. I was admitted to hospital and started 1000mg infusions of obinutuzumab (Gazyva®). I went back into remission in April 2018… so life went on.
Unfortunately, in July 2020, the CLL again returned. I was treated with the oral drug, acalabrutinib 100mg (Calquence®) together with a cocktail of other drugs daily, and no chemo thankfully.
This treatment continues today and is ongoing indefinitely. I continue having a check-up every three months and my bloods are currently maintained as ‘normal’. I do feel tired and rather listless and have put on substantial weight, but at 77 this may be a case of age, and the surrounding problems of the COVID pandemic.
Having overcome prostate cancer, then lymphoma, Patrick began treatment for CLL when it returned in 2017
I am of the belief that still it is not my time and am enjoying life to the full. I have become far more aware of my mortality and am constantly reminded with a regimen of 14 pills a day. I also have sleep apnoea that involves the use of a continuous positive airway pressure(CPAP) machine. This combined with the side effects of the radical prostatectomy, results in numerous trips to the bathroom during the night, and a small level of incontinence does have an impact on any holiday or day away plans.
I do try to be the eternal optimist, but on occasions, especially when reminded of one’s mortality by friends (including Olivia Newton-John) and others you know ‘passing on’, one can experience a little depression.
I have always been a very open person and enjoy chatting, and as such have never been apprehensive about talking of personal issues and this has helped me – ‘a problem shared is a problem halved’. My family and friends have all been very supportive and talking of challenges in an optimistic way helps. I try never to complain or sound hard-done-by as people don’t want to continually hear a complainer. And in the same way, I avoid negative people who want to tell me of someone who had what I have and died!
Since 2020 Patrick has continued to take acalabrutinib and a cocktail of other drugs to treat his CLL
I read scientific articles and medical updates about CLL. Back in 2005 my specialist gave me publications to read, and I’ve found other material myself around the cancer centres. When I was first diagnosed, I looked at the internet for information about CLL but found a lot of conflicting stories and they were not always positive, particularly around life expectancy, for example.
One thing that has been amazing in maintaining a positive and cheerful approach to life are the books* I wrote at the time when I was first seriously ill and at my lowest, dealing with a concerning prognosis. As mentioned, when considering a bucket list, I found that I had experienced such an exciting and fortunate life, I wrote it down. And as egotistical as this may sound, and I hope I will be forgiven if I admit that during times of challenge when I get the odd ‘down moment’, I actually read my own books just to remind myself of how lucky I have been and of the good fortune I have had.
Having had a career in luxury hotels, I enjoy travel, fine dining, and I try to maintain contact with the young people I have worked with. They are now older and more established, and I like to think I helped them along in their own careers.
Last September, Patrick (second right) and his wife, Gan, (second left) attended the marriage of one of his sons, Tim to Carol (both centre) along with another son, Charlie (right) and his fiancée, Susie (left)
Overall, I would summarise my experience with CLL as “irritating”, but I have not allowed it to be a major negative in doing what I want to do.
I fight to accept I’m getting older, and I am starting to struggle with the reality of closing in on 80, plus my medical and medicine issues. Travel is becoming more questionable. I had hoped to go to the UK to catch up with my elder brother with whom I was close, but he died in October. All my brothers have gone now and I’m next in line.
I want to stay around to care for and enjoy the happiness and companionship I have with my wife, Gan, who is younger than me and she keeps my mind young! I have been married three times and have a rather unusual family with six ‘international’ children who I spend time with. Seeing my eldest son marry last September and my younger son’s engagement are recent highlights.
“I knew Olivia Newton-John quite well and she spoke to me when I first discovered I had leukaemia and her positivity and approach to the challenge gave me a lot of strength”
Along with my family, writing my books, which are now published and will be on some bookshelf somewhere forever, is what gives me the encouragement and inspiration to keep going on my journey with CLL.
When the pandemic began in 2020, we were just focused on our move from Western Australia back to Gosford in NSW, to be closer to our family in Sydney, and were more concerned about border closures. Being a rather isolated state, WA was also rather remote from the problems of COVID, and apart from the loo paper panic, there seemed little concern.
I have followed the government advice and, no longer being social animals, we did not go where the crowds were and always wore masks when shopping. I have had all the appropriate vaccinations and with precautions avoided contracting COVID-19 until late last year.
After Gan had tested positive on December 24, I tested positive with a rapid antigen test three days later. I immediately sought the antiviral drug that I had been advised to take within five days, in the event of a positive result. My haematologist instructed I take molnupiravir capsules in preference to the current drug as she felt that might have an effect on the cancer drugs I am taking.
Over the years, Patrick has been photographed with a host of identities including Desmond Tutu, the former prime minister, John Howard, and Prince Charles
COVID has affected me far worse than expected.I started the antiviral on December 30. At the time I felt OK but as the days progressed, I became short of breath and had a lot of coughing. On January 4 I went to Emergency at Concord Hospital and was put on oxygen and x-rayed. I was diagnosed with COVID-19 pneumonia and given dexamethasone. I also had immunoglobulin intravenously as per my haematologist due to having hypogammaglobulinaemia.
I was discharged on January 6 and had a negative RAT as of January 10. Since then, I have felt totally lethargic and at times so very tired. My breathing has improved but is still tight. I had not expected to feel so tired and hope this will improve although it seems to be a long process. It was suggested that I had ‘long COVID’ but this was not in the hospital discharge papers.
As I have faced each diagnosis and bout of treatment, I’ve felt a little more tired and less fit, not helped with the problems of aging. Overall, I feel I have coped well, albeit with a little more reality, such as getting my will in order and planning for what comes to us all… in time!
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* The Grand Life is the title of Patrick’s trilogy. Parts I, II, III are available at: www.patrickgriffin.info
