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- 2023 & What we have planned so far
- Legs Out for Lymphoma
- Our partnership with Dermal Therapy
- Patient Treatment Support Kit
- Welcome to our New Nurses
- Sex, Intimacy & Sexual Health
- EOI - Languages other than English
- Latest PBS submissions
- ALLG
- Upcoming Support Groups
- Caryl's Coaching
Photo: Nurses Left to Right: Nicole, Wendy, Erica, Lisa, Emma
Our Plans for 2023
Dear Everyone,
As we move into the new year, at Lymphoma Australia we are excited to announce our plans for 2023. We have a variety of educational events, support groups, and fundraisers planned. Lymphoma Australia are also working to expand our reach and resources to better serve our lymphoma community. Our commitment to providing the most up-to-date information and resources to anyone impacted by lymphoma will continue to be a priority through 2023, whilst also offering a supportive network.
As always, please reach out to our team if you need assistance 1800953081 or nurse@lymphoma.org.au
Educational Events: We have a number of disease specific webinars with talks from the experts happening online. To see what is planned check out our Events Calendar or watch our for our monthly educational update.
Support Groups: There are regular online support groups planned throughout the year as well as some in-person groups starting. To keep updated on when, see the bottom of this newsletter or check out our Events Calendar.
Awareness / Fundraising Events: Currently we have Legs Out for Lymphoma happening in March & April - You can take part as an individual or create a team with family, friends, your school or co-workers. In September we have GoLIME for Lymphoma to encourage awareness in the community for Lymphoma.
Health Professional Education: We are constantly visiting your treating hospitals, educating the staff about Lymphoma subtypes and how we can support patients. We also have an Annual Nurses Conference - so mention us to your nurses next time!
Resource Updates: We are regularly updating our Subtype Brochures and website information. So check out our website for all of the up-to-date information on your specific subtype.
Legs Out for Lymphoma is a great way to have fun, smash some fitness goals and support patients and their families across Australia living with lymphoma. The event is taking place during March-April and registration is FREE!
You can take part as an individual or create a team with family, friends, your school or co-workers. Choose your own legs out challenge: run, walk, row, cycle – your activity can be unique to you.
REGISTER TODAY and "legs get together" for lymphoma and CLL patients and families.
Partnering with Dermal Therapy
We are proud to announce we have partnered with Dermal Therapy! Dermal Therapy have supplied our patient community with award winning sensitive skin care in our Patient Treatment packs. They are supporting the nurses caring for lymphoma patients by providing specialised skin products distributed through our hospital visits.
Dermal Therapy is an Australian skincare brand with an extensive range of affordable and effective products, delivering proven results against all skin concerns from dryness and sensitivity to Eczema and Psoriasis. The range is recommended by dermatologists nationally and is made with the highest quality ingredients. You can find Dermal Therapy products in most major retailers ie. Woolworths, Coles & Chemist Warehouse, as well as most other pharmacies.
We thank them for their generous donations to our patients and nurses!
If you would like to learn more about Dermal Therapy's amazing products or go in the draw to win a hamper click here.
Are you currently undergoing treatment for your Lymphoma?
Then you are eligible for one of our patient treatment support kits...
This kit contains many essential items for anyone undergoing treatment for Lymphoma, such as a reliable thermometer, soft toothbrush, mouthcare products, specialised skin products and more. Plus it comes contained in a convenient bag that can be reused for medications or information for appointments.
If you require one, please fill out this form or call the nurse line:
1800 953 081.
Welcome to our new nurses!
Nicole & Emma
We would like to introduce the newest members of our nursing team - Nicole & Emma. Both of these amazing nurses come to us with a wealth of experience and knowledge. Nicole is NSW based and Emma is based in Melbourne, will focus on VIC and SA. You may speak to both of these ladies via our Nurse line or emails or on our Facebook support group.
Let’s talk about sex!
Sexuality, intimacy, and Sexual health
Sexuality is the way we express ourselves sexually from the way we feel about ourselves, the way we dress, the way we move, the way we have sex and who we have sex with.
Sex is the physical way in which we express our sexuality.
Intimacy is the physical and/or emotional closeness to another person. Intimacy can be expressed in different ways and is not just physical.
Sexuality, intimacy, and sexual health is an integral part of who we are whether we are in a relationship or single. Majority of people living with lymphoma report changes in sexuality and intimacy.
How does lymphoma impact sexuality?
Lymphoma can cause a physical, psychological, and social imbalance which impacts on sexuality and intimacy.
Some physical changes may include:
- Low oestrogen levels
- erectile dysfunction
- vaginal dryness
- pain
- nausea and vomiting
- nerve damage
- skin sensitivity
- sleeping problems
- fertility issues
- orgasm difficulties
Some psychological changes may include:
- role changes in a relationship (eg. Partner and partner vs patient and carer)
- fatigue
- anxiety, stress, worry and fear
- altered body image and low sexual self-image.
It is also very important to note that treatment which lowers the immune system can cause a re-emergence of previous sexually transmitted infections such as genital warts and herpes.
What causes this impact?
Treatment including chemotherapy, radiotherapy, surgery, hormone therapies, immunotherapy, targeted therapies, and supportive medications may lead to a decrease in your libido and arousal, effect your ability to orgasm and decrease your desire for physical and emotional intimacy. Some side effects from treatment such as weight loss/gain, hair loss can change how you feel about yourself.
What can I do? Adapting to the ‘new normal’
It is hard to predict how lymphoma and its treatments may affect your sexuality and intimacy and for how long. For some it is a short-term disruption but for others it can mean needing to adapt long-term. Rather than striving to return to pre-lymphoma normality, it is important to concentrate on finding new ways to maintain intimacy and sexuality.
Some ways that may help you adapt to this new normal include:
- Allow yourself to grieve the loss of familiar sexuality and sexual response
- Practice talking openly about sex, sexuality and intimacy with your partner or someone you trust
- Investigate use of sexual aids - vibrators, dildos, lubricants
- Focus on pleasure not performance
- Consider pain relief and positioning
- Create a relaxing environment (meditation and relaxation techniques may help)
- Try exploring sexuality on your own through self-touch and masturbation
Who can I talk to?
Whilst the majority of individuals living with lymphoma experience these changes most will not seek advice from their healthcare professionals. These changes are as important as any other side effect! Hospitals and treatment units can be tricky environments to have these conversations, but all healthcare professionals will be able to help you with your questions and concerns or at least refer you to someone who can. If talking about this topic is something you are not used to, sometimes it is easier to start the conversation with someone you feel comfortable with, this person could be your partner, friend, or family member.
Useful Links:
Lymphoma Australia Sex and Intimacy Brochure
Sexuality, Intimacy and Cancer Sex & Lymphoma - with sexologist Chantel Otten
Sexuality & Lymphoma - with Sexual Health Nurse Simone Sheridan
Expressions of Interest
Do you speak a language other than English – We are looking for Volunteers
Did you know that more than half the people living in Australia, or their parents were born overseas? Or did you know there are more than 300 different languages spoken in Australian homes?
To keep with our mission to make sure that no one faces lymphoma alone, LYMPHOMA AUSTRALIA IS GOING MULTILINGUAL!
We are going to be adding a translation function to our website in the coming weeks, but we want to know that the translation makes sense to you.
If you fluently speak and read another language and would like to review a webpage or two for us in a different language, please send an email to nurse@lymphoma.org.au. When you email make sure you include the following details:
- Subject Line: Multilingual volunteer
- Your name
- What language/s other than English you fluently speak
- What language/s other than English you fluently read
- Are you a patient, carer or health professional?
- Your subtype of lymphoma if you are a patient.
We will be in touch with more details once we receive your email.
Latest PBAC Submissions
PABC or the Pharmaceutical Benefits Advisory Committee, is a meeting that provides recommendations on whether to list a certain medication for public funding to the PBS. As part of our advocacy work, Lymphoma Australia regularly supplies submissions to ensure all Australians have access to the best publicly funded medications. to the Pharmaceutical Benefits Scheme (PBS) in Australia, calling for better access to treatment options for lymphoma patients. The latest submissions included access for four drugs:
- Calquence® (ACALABRUTINIB) - for Relapsed or refractory chronic lymphocytic leukaemia (CLL) or small lymphocytic lymphoma (SLL).
- Ledaga® (CHLORMETHINE HYDROCHLORIDE) - Mycosis fungoides-type cutanous T-cell lymphoma (MF-type CTCL)
- Brukinsa® (ZANUBRUTINIB) - Chronic lymphocytic leukaemia (CLL)/Small lymphocytic leukaemia (SLL)
- Imbruvica® (IBRUTINIB) - Chronic lymphocytic leukaemia (CLL)/ Small lymphocytic leukaemia (SLL)
Overall, the submissions from Lymphoma Australia highlights the need for better access to treatments for lymphoma patients and the importance of ensuring that patients have access to the most appropriate treatment for their specific type of lymphoma.
ALLG News
ALLG News is for people interested in clinical trial research and the Australasian Leukaemia and Lymphoma Group’s (ALLG) mission to create better treatments and better lives for patients with blood cancers. The ALLG’s international clinical trial collaborations bring new treatments to Australians and New Zealanders; including patients like New Zealander Hemi Frires, a Royal New Zealand Air Force pilot who joined an ALLG clinical trial for the treatment of his Hodgkin Lymphoma. You can read Hemi’s story, and more, in this newsletter.
As the only non-profit collaborative clinical trials groups in Australia and New Zealand for blood cancers, the ALLG has the capability to run independent doctor-led clinical trials in Australasia and, crucially, to participate in international trials; allowing greater access to new drugs with the potential to make a significant impact on patient outcome.
You can subscribe to future editions of ALLG News here.
You can also find ALLG on the following social media channels:-
Upcoming Support Groups
Are you struggling with finding yourself amongst the chaos??
Regardless of where you are up to in your treatment experience, coaching support will be helpful. Lymphoma Australia has a free coaching support service provided by Caryl. Caryl can assist in coping with challenges, ease your feelings, help enhance your relationships and learn to understand your priorities to find a sense of peace.
Caryl has been mentoring and coaching for 2 decades and she is a lymphoma survivor and a volunteer with Lymphoma Australia. Caryl understands your experience and will help you find your direction amongst the chaos. Caryl will provide caring guidance to support you.
For more information on coaching click here
