Tag Archives: Wellbeing

Exploring the feasibility of a virtual wellness program for women after cancer

Since the start of the Covid-19 pandemic, workplaces and communities have been using online platforms more than ever before in order to stay socially connected despite physical distance. So how can this work in a wellness setting where support and connection is so key to success? We asked Dr Janine Porter-Steele from the Wesley Choices Cancer Support Centre and Dr Sarah Balaam from the University of Queensland about the latest EMERALD study, which is exploring the feasibility of the Younger Women’s Wellness after Cancer Program in Australian women.

What is the EMERALD Study and what are you trying to achieve with this trial? 

A team of leading Australian and New Zealand health researchers have been working together to pilot a virtual lifestyle intervention, the Younger Women’s Wellness after Cancer Program. This program aims to improve quality of life for younger women who have been diagnosed and treated for breast cancer. We aim to reduce treatment-related chronic disease risk for people taking part in the study and to determine whether this is feasible in the Australian context.

How did this Study come about? 

Partner trials of cultural-and language-adapted versions of EMERALD are currently underway in New Zealand and Hong Kong. The aim of this study is to test the feasibility of the Australian version of EMERALD in a similarly-aged, representative sample of women prior to a larger trial of the program across Australia, New Zealand and Hong Kong. Ultimately, we would like to see the wellness program embedded in clinical and community settings, making it easily accessible to those requiring post cancer treatment support.

Who can participate and how can they get involved? 

We are looking for women aged between 18 and 50 years old, who have had treatment for breast cancer in the previous 24 months, with no metastatic disease and have access to a personal computer, tablet device or smartphone.

Please visit us here to find out more.

 

One program doesn’t suit all – translating the WWACP in New Zealand and Hong Kong

Following the success of the Women’s Wellness after Cancer Program (WWACP) trials in Australia, Professor Sandie McCarthy had the opportunity to take Women’s Wellness outside of Australia when she took up a position at the University of Auckland back in 2017. We talked to Professor McCarthy about why there was a need for Women’s Wellness programs overseas and how the programs have been translated to be culturally appropriate and successful in different countries and regions.

What was the impetus for translating the programs for different cultures?

In 2017 I took up the role as Head of the School of Nursing at the University of Auckland. Given my background as a chemotherapy nurse in Australia and many years in research developing the Women’s Wellness after Cancer Program, it soon became very clear that there was no cancer research happening in supportive care in New Zealand.

The system was similar in terms of acute cancer treatment but, like Australia, it lacked the aftercare that women were crying out for. And the more I embedded myself in the system and heard from clinicians and patients, the more I realised the critical need for a program like the Women’s Wellness after Cancer Program in New Zealand.

How did you adapt the program for New Zealand and, in particular, Māori women?

I started talking to Cancer Trials NZ, who traditionally dealt with acute treatment, but who were very interested in exploring the development of a supportive cancer recovery program for women in New Zealand. At the same time, we identified that Hong Kong women were also hungry for a program. We successfully secured a grant to support New Zealand and Hong Kong to work together to build up the Women’s Wellness after Cancer Programs to be culturally appropriate and address specific needs in each country.

We worked with community leaders, health practitioners and academics to tailor the programs. In New Zealand, the program we run looks very different to the one we run in Australia. For example, in New Zealand our sessions are run in a Māori cultural space in groups, rather than individual sessions, to recognise that illness is shared by the whole family rather than just tackled by the individual who is unwell.

In Hong Kong, where alcohol is not really a health concern, we stripped that out of the program and the approach we’ve taken is much more direct to suit the learning culture. The Hong Kong program also focuses mainly on gynecological cancer with a strong emphasis on sexuality.

And what’s next?

The trials in New Zealand and Hong Kong have been hugely successful and we’ve since secured two grants to develop Hong Kong and Cantonese versions of the program. We also secured a grant from the Health Research Council of New Zealand to develop a culturally appropriate program for younger women in New Zealand with breast cancer. This trial has just been completed and was a huge success, finishing 12 months earlier than expected, even though it started 9 months late.

We are also really excited to announce that we will be implementing our Women’s Wellness after Cancer Program across a major health service in Queensland and will start to train more than 200 clinicians across their public and private services.

For more information about the Women’s Wellness Programs, visit www.dawncomplete.org.au

Intimacy, Sexuality and Cancer

Cancer can have an impact on just about every aspect of a person’s life but one of the more common long lasting effects of cancer, especially breast cancer, are issues relating to body image, intimacy, and sexual function. This supports the principle that these concerns need to be focused on and the opportunity created to discuss them at any stage of the treatment pathway.

There are many definitions for human sexuality and 1  how we feel about intimacy, sex, sexuality, and sexual relationships depends on a range of issues and it’s important to remember it’s not unusual to have sexual difficulties, even in times of good health and well-being. There are numerous reasons for this and often it can come down to inadequate information and education concerning sexual or reproductive health.

So why is it important to talk about sexuality and intimacy when diagnosed with cancer? It’s because this topic is very often overlooked and not discussed. This can be because it is often felt there are more important things to think about and discuss at this time, such as treatments and treatment schedules. Of course, it’s not going to be the first question someone asks their doctor but it commonly is an issue that comes to the fore at some point during or at the end of treatment. Understanding this will help you feel more confident to know when to talk more about it with someone who can help.

Living with cancer can affect a person’s sexual functioning in various ways, some of these effects may be due to the cancer itself, the treatments, or a person’s sense of self and/or their emotions at the time. Some of the sexual issues people with cancer have to deal with can be relatively minor, but sometimes they are ongoing and can be more serious and importantly, these questions change from the time of diagnosis, through treatment, and then into recovery.

As well as a cancer diagnosis, people may also have other conditions such as depression or hypertension, or they may be trying to manage menopause symptoms and along with this, their partners may be dealing with their own medical, psychological, and sexual issues. In fact, one of the best predictors of sexual concerns after a cancer diagnosis is to look at what a person’s intimate life was like before their diagnosis.

Sometimes, cancer can intensify these issues and while people may have managed different levels of desire before, cancer can complicate things and it can have an impact on both patients and their partners. People often say they experience loss of libido and interestingly, partners can too during this stressful time.

There are many solutions, and often a first step is knowing how to bring the topic up and ask for guidance. All patients should receive information about the possible side effects of the disease and treatment on sexuality and intimacy such as altered physical function and libido; problems regarding fertility; and menopause symptoms. It is, however, a difficult topic to bring up, not only for women but also for health care professionals who are also hesitant to initiate discussion and wait for the patient to voice their concerns –and consequently it often becomes an endless circle of inaction, frustration, and sadness.

It is also very important to acknowledge that these worries are valid regardless of a person’s age, whether or not they are in a relationship, the stage of their disease, and the type of cancer and surgery they are dealing with.

Here are some words you could use to help you bring the topic up.

How to bring up the topic with your health care provider:

“Is it safe to have sex / continue with our normal intimate relationship?”

“I have heard this treatment may affect my relationship with my partner.   Can you tell me what might happen?”

“My partner is worried he may hurt me if we have intercourse. Is this something I should be worried about?”

“I don’t feel attractive because of my scars and I’m worried my partner may not find me desirable any more. Can you recommend someone I can talk with about this?”

“I have developed vaginal dryness and its very painful and uncomfortable especially during intercourse – what can you suggest?”

And this may be helpful for health care professionals:

“I always ask how things are going with sexual relationships because it’s really very common to have difficulties after treatment. Is that something you would like to talk about?”

“I’m really pleased to hear the treatment side-effects are settling down. I find for most people at this stage another area of concern may be about intimacy and sexual function. Are there any issues you would like to discuss?”

If connection with a physiotherapist is available to you, their expertise can assist with advice relating to positioning and exercises to help improve pelvic floor strength. A breast care nurse or general practitioner may also be able to provide information regarding the appropriate use of gels and creams – and this is a topic we can provide more information about at another time!

Importantly, be kind to yourself and have realistic expectations.

1 W.H.O. Gender and reproductive rights: sexual health. 2002. who.int/reproductive- Health/gender/sexual_health.html. Accessed May 2007

By Janine Porter-Steele RN PhD and Leonie Young DUniv

This article first appeared in Reach to Recovery’s Bloom magazine, Issue 33 – December 2021.

Helping young people rebuild their lives after cancer

A digital program to support young people adjusting to life after cancer has been awarded $1.37 million from the National Health and Medical Research Council.

Dawn collaborator Professor Sandie McCarthy, from the University of Queensland’s (UQ) School of Nursing, Midwifery and Social Work is leading the project BALANCE, which will be developed by UQ in partnership with cancer support organisation Canteen.

Professor McCarthy said the aim of the digital program was to enhance the physical and mental wellbeing of young people treated for cancer by giving them the knowledge and skills to sustain a healthy lifestyle.

“Surviving cancer does not necessarily mean younger people can return to their former state of health – they must work at it,” Professor McCarthy said.

“Young people need mental health strategies to manage the distress associated with their cancer experience.

“As the program is driven by the needs of young people, it will be designed and delivered in consultation with them.”

For more information about BALANCE, contact Professor McCarthy at s.mccarthy@uq.edu.au

Video courtesy of Channel 10 News, airing 8 October 2021

 

The BALANCE program is supported by:

UQ Balance Program Supporters

So what is motivation ?

Motivation is the determination to reach our personal goals or desires. It is influenced by how much we want to achieve that goal, what we might gain from the achievement and what we from expect from ourselves.
There is little doubt that when it comes to health and wellness, the ability to stay positively motivated and continue with good physical activity and nutrition habits can be a struggle. Often we start out strong and then ‘life’ gets in the way and we go back to our old, perhaps not so good, behaviours. So here are some quick tips to help you stay motivated. 

- Self-belief to stay motivated is important as it influences our thinking. Developing a positive and high self-belief can create successful changes in our behaviours especially during exercise and help us reach our goals. Use positive self-affirmations.

- Find your reason why you want to achieve this goal, write it up somewhere and keep your focus on it, this is often a good way to stay motivated if you feel you are faltering.

- Set realistic, rewarding goals and regularly review them. This is a key aspect of keeping yourself motivated to get the positive benefits. To start with, it is sometimes helpful to just set one achievable goal and work it into your daily routine, break it down into manageable parts.  For example if your goal is to exercise, start by doing a daily walk for 30 minutes. Have a timeframe for when you want to have achieved this a s regular activity and then build on it.

- Keep a good and regular routine – Use an app or a reminder system so you can’t let the day escape before you have achieved your daily goal – some people make this work by creating a daily appointment for themselves just as they would for any other appointment for example the hairdresser, doctor, dentist or a friend. Being busy’ or ‘being too tired’ often causes a break down in the routine that was
initially set.

- Use your family and friends as support – tell them about your goals and encourage them to help keep you motivated. Buddy up with someone so you can help and motivate each-other or get yourself a mentor to guide you. Check your goals and your progress frequently. Seeing good progress is a great motivator in itself, and can also improve your self-confidence.

- Keep goals fun and reward yourself when you have achieved them, make a plan for when and how you will do this. Put a note on your calendar for reward day so you keep progressing towards the goal.

Remember …..
If you lose motivation for a day or two, don’t let that deter you. Pick yourself up and carry back on again, see it as a challenge not a failure, setbacks are normal.

Sexuality and Relationships after Cancer

Cancer doesn’t just affect the person diagnosed it has an impact on the people who are closest to them and it can also be very stressful for their partners. For many partners there will be a period of shock, anxiety and fear until they have adjusted to the situation. There are many tricky topics for couples to negotiate during diagnosis, through treatment, and beyond and one of those topics is sexuality and intimacy.

Being close to someone who has been diagnosed and treated for cancer can impact on all aspects of the relationship including the sexual and intimate relationship of a couple. There may be a number of concerns, including resuming sexual activity because you are afraid of hurting your partner, or concerned that initiating sex is inappropriate when they are feeling tired or unwell. You may be worried about showing shock at scar or other bodily changes due to treatments, or anxious that the chemotherapy and radiotherapy could have an effect on you. It may be that you are worried about the future and are fearful of losing your partner. All of these issues may play a role in diminished sexual intimacy.

Equally your partner may be concerned about whether you will still find her attractive, how you see her now, and if you will be comparing things to how they were before. These concerns are common, and you may be both making assumptions about how the other feels without knowing it. Communication with your partner is key and taking the time to discuss how she feels about intimacy, and when she thinks a good time might be to resume sexual activity. It is important to have an open and honest conversation that remains supportive to discuss fears and worries you both have, dispel some myths  and how you will overcome them and potentially show affection in other ways.

If you can relate to some of these points, it is really important to chat to a health professional, there are often simple strategies to help address these problems.

Below are some resources that may also be helpful:

https://www.canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/impact-breast-cancer-sexuality-and-intimacy

https://www.petermac.org/services/support-services/cancersurvivorship/survdirect/sex-and-intimacy

https://www.cancervic.org.au/living-with-cancer/sexuality-and-intimacy/sexuality-and-intimacy-overview

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/sex-and-cancer

https://breastcancernow.org/sites/default/files/intimacy_and_sexuality_for_cancer_patients_and_their_partners.pdf

Janine Porter-Steele

Janine is The Clinical Nurse Manager of the Wesley Hospital Choices Cancer Support Centre in Brisbane.  The centre offers support, sharing and information for women, men and their families affected by a diagnosis of cancer. For many years Janine has also been actively involved with the Women’s Wellness Research Programs as manager,  delivering the programs, supporting the development of resources, and co-writing a number of the journals.

Janine undertook much of her training in the UK as a registered nurse, midwife, health visitor and family planning nurse. She completed a Bachelor of Nursing at QUT, a Masters in Nursing Leadership at ACU and she is also Breast Care and Women’s Health Nurse. Janine believes very strongly in providing interdisciplinary and comprehensive support for people affected by a diagnosis and treatment of cancer and has a particular interest in younger, midlife and older women’s health. Janine completed her PhD studies in the area of cancer and sexuality linked with the Women’s Wellness after Cancer Program (WWACP). Her particular focus is in managing menopause, sexuality, body image and depression issues for women.

Lately, Janine has been working with Auckland University and the University of Queensland to deliver a program as part of a research trial providing a Women’s Wellness Program for young women in New Zealand  (NZ) diagnosed with breast cancer. She and the Women’s Wellness team have also been recipients of a grant from Wesley Medical Research. They are using this to replicate the NZ feasibility trial with young women diagnosed with breast cancer in Australia.

In her spare time Janine likes spending time with family and friends. She enjoys walking the local bush tracks in the area. Her favourite relaxation is wandering along the beach in Northern New South Wales and kayaking the rivers down there.

Leonie Young

We hear stories all the time about people diagnosed with cancer but when it becomes personal we’re never prepared.  Somehow, we seem to think we’re different and these things happen to other people.  Well I learned otherwise.  Cancer is what opened up another world and changed so much about who I thought I was.

Breast cancer was totally unexpected especially as I was only 32 years old.  I was busy enjoying being a mother to my two small daughters.  I certainly wasn’t ready to die, although like most people diagnosed with cancer, this is what I thought.

Just hearing the words You have cancer can be a devastating experience people usually remember for the rest of their lives long after they have forgotten all the details of medical treatment and tests that followed those words.

Often people are so frightened by the word “cancer” they hear nothing else.  Interestingly, hearing the diagnosis may actually be more traumatic for some, regardless of their diagnosis. That’s what having a cancer diagnosis is like – people aren’t necessarily brave or especially wonderful in what they do, they just do what they have to do to survive because there’s really no other choice.

My world soon changed to the previously unknown one of tests, surgery, and chemotherapy.  Cancer treatments aim to save lives but in doing so, they often bring life-changing side-effects.   I eventually found ways to make meaning of what I had been through  and found myself being involved with many aspects of cancer consumer advocacy, support, training, and mentoring.  I became interested in research because I believe evidence based practice is the only way we will see change and I have  been able to work along-side researchers  providing input from my personal experience as they develop their research projects.

Likewise, in my work at the Wesley Hospital Choices Cancer Support Centre (Choices) I help support people diagnosed with cancer from the perspective of someone who has “been there” and now with my work and through initiatives like the Women’s Wellness  Programs and the Younger Women’s Wellness After Cancer Program, this support is able to continue in a very rewarding way.

I’ve survived to see my daughters grow up, get married, and have children.  I have to confess I’m torn between wanting to stay young and knowing that growing older is a privilege many women still don’t have.  When I was that young woman back then I really wanted to be where I am today so I do try really hard to embrace the ever increasing grey hair and consequent extra trips to the hairdresser and wrinkles and all the other things that come with age.

Over time I learned to respect cancer, not fear it.  I discovered the power of the lived experience, the value of peer support, and about how I could make a difference.

I want breast cancer to go away so my daughters and grandchildren – and your children, grandchildren, sisters, mothers, friends can live without the fear of breast cancer.

Alcohol

Alcohol consumption is always a risk and the risk further increases if there is an excess on a regular basis or if binge drinking occurs. Excess alcohol consumption by women can cause issues in weight gain, high blood pressure, and increases risk for many health conditions including cancers and diabetes. Health and wellness in relation to alcohol does not have to take away alcohol all together for women, however promoting a healthy lifestyle whereby alcohol is not relied upon can ensure you are not consuming too much. These are some useful tips for the home and the workplace to promote this balance and provide positive healthy living messages surrounding alcohol intake:

1. Try not to make staff or other outings in places that promote alcohol consumption.
2. Always have water/other options available instead of alcohol at work functions.
3. Attempt to set goals to reduce the amount of standard drinks you have per day/week.
4. Avoid binge drinking.

These few tips can reduce the risks that come with consuming alcohol. Though avoiding alcohol all together would be the ultimate goal to avoid the many risks that can come from its consumption, remember there are other options. By placing smaller goals like specific weeks or months with no alcohol it is recommended to decrease the chances of getting a life-threatening illness and increasing overall health and wellness.

Goal Setting

Goal Setting can be an important action in ensuring health and wellness. Setting goals both large and small can provide direction and focus and promote healthy habits to provide positive outcomes. Here are five goals that the Women’s Wellness Program focuses on to encourage healthy change:

  1. Healthy weight and waist circumference.
  2. Physical activity.
  3. Reducing unhealthy habits.
  4. Healthy eating.
  5. Reducing stress.

Setting small goals within each area gives a starting point. Goal setting should start with goals that are not easy but not impossible. Starting with smaller goals allows you to put in the effort to do something and be able to maintain it. This can include reducing consumption of certain foods/alcohol/smoking daily or increasing physical activity per week. This can also lead into taking time in your day to attempt to reduce stress levels. From here goals can be increased and placed in more specific areas of weight goals, physical activity goals, and beating unhealthy habit (smoking/alcohol/caffeine) goals. Each of these is an important part of maintaining a healthy lifestyle and increasing overall wellness.