Foundational Insights

We imagine you have already received a lot of information about your cancer, cancer treatment, and the most common side effects associated with your treatment. Most people report feeling somewhat overwhelmed by the amount of information they receive from their initial diagnosis and throughout their treatment. Often, people don’t know where to start and how to find the most relevant information to their situation without having to navigate through websites or booklets.

The main question on most people’s mind when managing their side effects are: How long will this last? When will this improve or go away? Is this my ‘new normal’? and these are all important questions!

At Valion, we understand that what often lies behind these questions is how to manage expectations (your’s and others) about your recovery, how and when you are likely to be able to return to work, when you will regain your independence, and what to expect in terms of your physical and mental capacity, so you can get back to doing the things that are most important to you. 

The purpose of this topic is to start a conversation with your Valion Oncology Care Coordinator to help you better understand your side-effects and ensure that you have the right information and support to give you greater confidence and control about how to manage your side-effects and what to expect at whatever stage of your cancer treatment or recovery you are at.

What are the most common side effects?

We understand that cancer is complicated, and there are many different types of cancer and ways of treating cancer. Your Valion Oncology Care Coordinator has extensive experience across all cancer types, treatments and has access to great resources to link you with the most relevant and helpful information to address your specific needs and side effects. 

Research tells us that cancer-related fatigue is one of the most common and debilitating symptoms reported by patients. The majority of cancer patients report that fatigue adversely affects their ability to work (61%), interferes with their usual activities (51%) and interferes with their ability to take care of their families (42%). You may like to read more about the impact of fatigue on wellbeing here before your next session.

We recognise that side-effects are very real and unique to your cancer experience, stage of life, and gender. Your side-effects will look very different depending on what stage of treatment or recovery you are at when you join the Valion Program. 

We have the experience to support any level of side-effects whether it needs immediate management (acute) or is more persistent (latent effect), and help you to take a proactive approach to either prevent or reduce the risk of certain side-effects developing or persisting! 

Whilst this is not a complete list of side-effects, below are the most common side-effects that people typically discuss with our team:

  • Fatigue (acute and persistent)

  • Changes in thinking, concentration and memory and brain fog

  • Peripheral Neuropathy – Changes to Sensation and Coordination 

  • Early onset Menopause

  • Sleep Changes 

  • Low Blood Count – 

      • Low white blood cells (Neutropenia) – Infections
      • Low Hemoglobin (Anemia)
      • Low Platelet Count (Thrombocytopenia)

  • Changes in appetite, taste and smell or dietary preferences, nausea and vomiting

  • Mouth changes – painful mouth, change in saliva production (too much/or dry mouth)

  • Bowel changes – constipation, diarrhoea, urgency

  • Skin, Nail, Hair and Eye changes 

  • Hearing changes – ringing in the ears, hearing loss

  • Weight loss or Weight Gain

  • Sexual problems due to physical or psychological side effects of cancer treatment (desire, sexual function, erectile dysfunction, vaginal dryness)

  • Fertility issues

ACTIVITY: 

Write down in what ways these side-effects are having the most impact on your daily life at the moment (i.e., enjoyment, your relationships, your mood, sleep) and consider those side-effects that you feel least confident managing at the moment.

Consider: What advice or information have you already been given? Where you are getting stuck? Which side-effects are you concerned will have the most impact on your ability to return to work? 

You can discuss this with your Valion Oncology Care Coordinator during your next session.

What are the main challenges in managing side effects?

We recognise that there is often a lot of information that is discussed in your medical appointments at the hospital or when visiting your GP. Patients are often unsure who they should be speaking with about their symptoms or concerns, or forget to raise or discuss their concerns with their doctor due to either short appointments or addressing other priorities such as explaining your treatment or results. Pain and fatigue are especially important side-effects that need to be proactively managed as they can negatively impact your mood, outlook and quality of life.

People often don’t know where to start or find information too general and do not offer any meaningful or specific advice about how to manage how the side-effect is uniquely impacting them and their current situation.

Patients often feel:

  • concerned about appearing ‘ungrateful’ for the care they receive or have received
  • they may be seen as ‘weak’ or a ‘difficult patient’ and that they should just put up with certain side-effects and get on with things. 
  • the problem may be considered trivial or minor in the bigger picture of treating their cancer!
  • family and friends are tired of hearing them talk about their fatigue and other symptoms and stop sharing what they are experiencing.
  • frustrated that their friends and family continuously ask “how do you feel?” or misinterpret signs of fatigue with “are you okay?”, “are you upset?”.
  • they need to ‘push through’ side-effects as they do not want their family to see them struggling or they want to show they are being positive.

TIPS: What is the best way to manage side effects

  • Write down your concerns in one place! Each time you experience a side effect or a concern that you think would be helpful to discuss with a health professional. 

  • Share with your family, don’t try to managing things on your own

  • Consider using a tool to track your side-effects such as Abby 

  • Exercise has been shown to have a positive effect on fatigue, but it can be difficult to know where to start – we will explore this during the program!

  • Explore complementary therapies such as yoga, relaxation therapy, mindfulness based interventions or acupuncture.

  • Stay on top of side-effects such as nausea and pain! Many patients express concerns about taking lots of medications and avoid proactively managing meditations to stay on top of side-effects leading them to get stuck in a pain or symptom spiral.

Resources to help better understand and manage your side effects

Your Valion Oncology Care Coordinator can help you register to access AbbyHealth (Patient Support & Insight Tool)

Print and use the Valion Health Fatigue Diary 

Resources to help better understand and manage your side effects

We have developed a number of key resources that might assist you in exploring more about some of the key side-effects that have the greatest impact on everyday functioning and most likely need to be well managed to support your return to work. 

Your Valion Oncology Care Coordinator will talk with you about and direct you to the most helpful and tailored (specific) resources that they think will support your needs so that you can confidently manage your symptoms during treatment and into your recovery and rehabilitation.

Want to take a deeper dive into Managing Cancer-Related Fatigue or brain fog?

Places I can go to access more support

  • Talking to your treating team – if you don’t have an appointment coming up you might consider contacting the team to make an earlier appointment

  • Contact your treating hospital to see if they offer cancer-specific rehabilitation programs or have allied health professionals that you can make an appointment with.

  • Speaking with your GP, they can prepare a Team Care Plan and refer you to a specialist or allied health professional in the community such as an  occupational therapist, incontinence physiotherapist, speech pathologist or oncology dietitian.

Key takeaways’s 

  • You are not alone! 

  • Whilst ‘common’, side-effects are unique to you and very real

  • It is important to continue to talk about your concerns with your team and supports no matter how long symptoms persist.

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