Many people in our communities face lasting impacts from their treatment.

Through looking at other resources and talking to people with a lived experience of cancer we noticed a lack of emphasis on the after effects of hospital treatment. Many people are left dealing with life changing impacts and can sometimes find themselves surviving, but not thriving or feeling vitality. Some people will find it difficult to find support for the impacts they are experiencing (see: community support). We heard: 

• Some people might feel ungrateful for struggling with the impacts of their hospital treatment. Or to avoid seeking medical care for these impacts due to medical fatigue. 

• Regardless of how medical systems may define your current status you might find it helpful to refer to yourself as still being in treatment. 

• You might view the ongoing impacts from your treatments as chronic illness or injury.

While everyone is impacted by cancer differently, there are some shared experiences and strains.  Sometimes good things come out of cancer. Your priorities may change.

Financially, strain can continue if you can’t work or can only work a small amount. Some people can’t or don’t return to the work they did before cancer and might have to go back to work sooner than they’d like to due to financial pressure. There are costs that come along with accessing on-going care (for example, accessing physio, dental work, mental health support, using the gym, being on a special diet). Financial support that’s available through your cancer treatment might not continue after your treatment has ended. Depending on your cancer type some of your treatments may be covered by medicare. Read more about financial assistance and returning to work at Cancer Council Victoria.

Relationally, cancer can change the dynamics in our relationships. In romantic relationships, the feeling of being a patient can stick around. While some relationships won’t survive cancer, cancer can also bring new relationships or new dimensions to existing relationships. 

Physically there are many things that can change permanently with the way your body works in daily life and sexually. Read more in intimacy and sexual function or in body image and identity. You might not be able to return to the kind of movement or exercise you did before cancer, or, you might need to find new ways. 

We also heard about positive impacts to people’s lives. This is sometimes called post traumatic growth (PTD). Some of the positive impacts included being more present to life, more focused on what they want (and don’t want), having a deeper spirituality, having healthy habits stick better than before and strengthening relationships.

Coming out of the haze. After hospital treatment there can be a big process that is less about fighting the cancer and more about acknowledging and beginning to process what happened to you. The shock, the grief, the loss and changes to your body and lifestyle. 

It can take time to connect with how you feel. There is no right way but many ways, for example: 

• Spending time alone thinking, drawing or writing 

• Talking with other people who understand (see support groups) 

• Making art, music or accessing art therapy

• (Re)connecting with culture and cultural ways

• Working with a therapist, counsellor or another healer 

• Taking part in cancer advocacy, consultation or co-design 

You might need to process what you’ve been through separately to your partner/s and the people who have cared for you through your treatment. The people who have cared for you might need to process their experience separately from you.

After cancer it takes time to re-find your way- to yourself, to intimacy and sexual function, in relationships, to queer and other communities, to your senses (e.g. taste, smell, touch that may have been affected through treatment), to work, to nature or Country, to spirituality, to your changed body, or to other parts of who you are now. It’s normal to be worried about cancer coming back. 

As well as finding ways to process your experience in a way that’s helpful for you, there are ways to recalibrate, navigate life, intimacy and your changed body. There is no right way.

We know finances can be a big barrier and some care is expensive. 

As you spend less time in treatment and with health providers, community care and connection becomes even more important. We know that some people are isolated from queer and other communities through their cancer and might struggle to find accessible ways to connect again. 

We heard the following things might help from the people we co-designed with: 

• Releasing expectations about living or being the same as before and acknowledging grief and loss that comes with those changes.

• Finding kinds of community connection that feel safe and accessible, for example, joining a queer bookclub, x or x. As you spend less time in treatment with health providers, community care and connection becomes even more important.

• Finding movement that’s accessible for your body now, for example, if you were a runner but your body isn’t ready to run you might do yoga, tai chi or aqua aerobics instead. This can involve releasing and resetting the expectations you have about your own body.

• Exploring different kinds of intimacy and different kinds of sexual expression, for example, sex with strangers, self-pleasure, emotional intimacy. Read more in intimacy and sexual function.

• Getting more help from mainstream and complimentary medicine providers, for example, you might explore functional or cosmetic treatments, acupuncture, x and x.

• Noticing what feels healing and reconnecting, for example, spending time in nature, writing, making art of music, gardening or something else. 

Some people will be recommended ongoing preventative care, which might include medication, regular scans, and ongoing support from health providers. 

For trans and gender diverse folks.

If you’re recommended medication, you might ask:

• What can I learn about other people’s experience of being on [name of] medication long-term? (e.g. reading blogs, talking to others) 

• Who can I speak to who can explain in-depth the short and long-term effects of taking or not taking these treatments? 

• If I choose not to take preventative medications, what is the likelihood that my cancer will return? How much is the risk lowered through this medication? 

Support 

As you spend less time in treatment and with health providers, community care and connection becomes even more important. We know that some people are isolated from queer and other communities through their cancer and might struggle to find accessible ways to connect again. 

We share some ideas below.