Leaving hospital

When a child or young person finishes cancer treatment it can be a time of mixed emotions. Often this is a long anticipated event, and when it feels like they should be happy and celebrating, families may also feel anxious and overwhelmed.

Leaving hospital and going home will be a different experience for each person, but Cancer Advisor has some resources on finishing treatment that may be useful.

Leaving hospital can be a scary time for a lot of families. They talk about leaving the safety net of the hospital, leaving their oncology family. Often losing this close support is the hardest part, as many other people in their life don’t understand that the journey doesn’t end when your child comes home. It’s not just the end of a really significant chapter, but the start of another chapter which brings new challenges” – Redkite Social Worker

For parents of children with cancer, you may wish to look at this resource from Redkite, which provides an overview of what to expect when your child finishes treatment. It might also be helpful to read personal stories from other parents about their experience at the end of treatment.

For young people with cancer, you may have been employed and working during treatment, or you might have questions about how to transition back into study or work. It might be helpful to look at resources like Battle Weapons: A coping guide for young people with cancer to get an overview of the different resources available to you.

It’s common for people to feel lonely and misunderstood after coming home from hospital. Often friends don’t understand that the end of treatment doesn’t mean everything just goes back to normal.

“There is so much emotional isolation for families at this time. Leaving the hospital is something families dream about for so long. They tell themselves they just have to make it through treatment, they count down the days until their child can ring that bell for their last lot of chemo … but when they arrive at the end of treatment, instead of the anticipated celebration, it is more often a time when families realise the journey doesn’t end when their child comes home” – Redkite Social Worker 

For the first time in months I also felt very alone … I think being so far from the Children’s Hospital made me feel very isolated and vulnerable. It was like I had no safety net, no back up or access to medical and professional support if I needed it.” – Rhiannon. You can read Rhiannon’s story here. 

 

“I sometimes tell families that it is all a big jigsaw. If they think about their life pre-diagnosis they probably have a snapshot of what their life is. Once their child is diagnosed, the jigsaw crashes and there are pieces everywhere. Throughout the journey they might find a few pieces that fit back together, or pieces that fit somewhere new. But there are some pieces that just don’t fit anywhere, and pieces that are lost forever. By the time the treatment is ending, it’s not uncommon for families to need to find an entirely new jigsaw. To make a new snapshot. To remember that jigsaws are difficult, and they’re trying to put together a 100,000 piece, three dimensional puzzle … So they need to be patient with themselves.” – Redkite Social Worker

Cancer treatment often suppresses the immune system, for this reason children who are undergoing or have completed cancer treatment are more susceptible to infection. You can read this factsheet or watch this video from Cancer Institute NSW to learn more about infection during treatment.

It can sometimes be difficult to return to regular activities after childhood cancer. Living with the fear of infection brings many challenges, and can often stop families from doing things they’d otherwise love to do.

Some families will no longer travel or visit different places, for fear of being too far from the hospital if anything goes wrong. Likewise, after watching their child experience cancer treatment, some parents become understandably protective, and stop their child from participating in activities that could cause infection.

For young people in remission, it can be hard to pick up where they left off before cancer. In particular, there might be fears about sex, relationships and intimacy. Likewise, returning to school or work may bring challenges for young people once they have finished cancer treatment.  Cancer Advisor has resources on these topics for young people who have had cancer.

After childhood cancer, many families fear the cancer coming back, also known as relapse or recurrence. This fear is completely normal, but you may want help navigating how to deal with this fear and ensure it doesn’t control your life.

This article from KidsHealth offers some practical tips for parents, like how to establish routines that can help your child adjust. It suggests including your child in activities and chores as much as possible, and tailoring these to meet your child’s abilities.

You may also want to look at the section on coping with feelings. This applies to siblings too, and Cancer Advisor has a range of resource available to help children with cancer and their siblings expressing emotions, including fear.

“The thought of after treatment, when they aren’t getting chemo and the cancer has a better chance of returning, actually scares me more than the chemo and treatment process. There are also after effects to worry about, wondering what my child will and will not be able to do because of this fight. It feels like the journey is never really over. So while people tell me we will get through it, I’m feeling like we will always be fighting, worrying, and going through it.― Sara Fernandez, Huffington Post

This article from OncoLink offers some suggestions on how parents can balance their fear of relapse with their family’s desire to have a ‘normal’ life:

  • Some degree of worry, nervousness and anxiety is normal. However, if these feelings start to interfere with your child or family’s daily life or coming to appointments, it’s time to talk to your healthcare team. You can also see what other support services are available to you.
  • Remember, your child has gotten through cancer treatment; take note of the resiliency and coping skills of your child and your family
  • Ask for help from your support community when you need it.
  • Be aware of triggers for anxiety related to the cancer experience, including the anniversary of your child’s diagnosis or completion of treatment, upcoming scans or blood tests and scheduled appointments. Pull out the things that help you de-stress during these times.
  • Explore deep breathing techniques, journaling, mediation and mindfulness as ways to help manage your thoughts and concerns. Teach these to your child.
  • Encourage your child to continue to live their life: go to school, engage with your family and friends, try a new hobby, or perhaps give back to the cancer care community by being a buddy or peer support. This goes for parents and siblings too.
  • Seek out help and support from family, friends, clergy, support groups, and social workers.
  • As much as possible, try to put this fear in the “backseat”. Help your family get back to enjoying life and each other. Acknowledge the experience, but don’t let it control the future. If cancer does come back, your family will deal with it. For now, enjoy life!
Going back to school is an important milestone for physical and emotional recovery. Whether you are a young person with cancer, or a parent of a child with cancer, chances are you have some questions about this transition.

Going to school can give purpose and the chance to have some fun, but it also gives a sense that things are returning to normal. If you are a parent, you can communicate with the school about the anticipated return date, and any other information they need to know about your child’s cancer.

KidsHealth have identified some other topics you may wish to discuss with the school including:

  • Side effects of treatment. Some kids who’ve received chemotherapy or radiation may have trouble with concentration, memory, and fine motor skills such as handwriting. Contact the teachers if your child is having difficulty.
  • Special accommodations. Some kids with cancer need special accommodations to help them achieve in school. These can include special equipment, help with certain physical activities, more time to complete assignments, rest time, or tutoring. If needed, a customised learning plan (called an Individualised Education Plan, or IEP) can be set up at any time.
  • Getting your child involved. Certain activities, like contact sports, might be off limits for now, but your child can get involved in other ways, like keeping score or acting as a coach’s assistant. Talk to school officials to find out how your child might still participate in activities.
  • When to reach you. Provide contact information and tell the school to contact you immediately if your child doesn’t look or feel well, has signs of infection (especially a fever), or if a contagious illness is going around school, which can be serious in a child with cancer.

If your child is nervous about going back to school or isn’t yet up to a full-time schedule, consider an initial schedule of a couple of days a week or just for half days. For added moral support, see if a friend can walk into class with your child on that first day back. It is important to ensure your child knows to let someone know immediately if he or she isn’t feeling well or is having any problems.

Your child may be worried about the questions people might ask about the cancer. You can talk to someone at the school to see if it’s possible for someone to talk to their classmates before your child returns. This may also help if your child’s appearance has changed. You can find more information about changes to appearance from cancer and its treatment in this article.

If you are a young person with cancer, you may not have stopped working during your treatment. Some people are able to continue working while receiving treatment for cancer, and find that continuing their work gives them meaning and purpose. You may wish to look at this article to learn more about employment and working through cancer treatment. 

Some people may not want to work through their treatment, or their treatment might mean they are unable to continue working. If you had to stop work during treatment, it might be useful to talk to your treating team about what your capacity will be when you want to return to work, or even start a new job. There can be many challenges when navigating this transition, and some things you may wish to consider are:

  • Do you need to return on a part-time basis?
  • What flexibility will you need to manage any symptoms, or side effects from treatment, that you are having?
  • If you have to cut your hours, how will this effect your income and budget?

Sometimes this transition can be hard. If you aren’t settling back into working life it may help to discuss this with your hospital social worker. You may also wish to consider what other support services are available to you. You can check out these pages for more information, and you can also contact Cancer Council Helpline on 13 11 20

When someone finishes treatment and is in remission, they are sometimes referred to as a cancer survivor. Some people like this term, and draw inspiration from feeling they’ve survived cancer. For others, the term makes them a little uncomfortable. Whether or not you identify as a survivor, you may find it useful to look at some of our resources on life after cancer. 

You can also find information on different resources, events, and community organisations from the Australian Cancer Survivorship Centre.

“Now, at 22 years of age and having been in remission for nearly five years, I am able to look back at my cancer journey and realise that the experience has shaped me into becoming the best version of myself. I am grateful for the life I lead now.” – Adry Awan, cancer survivor. You can read more about Adry’s journey here.

Leaving hospital can be a difficult time for many families, but there is support available. You can find information on Cancer Advisor about various support services including counselling.  You may also wish to read our personal stories, or even share your own. Many young people find comfort and support in connecting with others who have been there before, so you might want to consider any peer support groups that you could join too.

Cancer Advisor has a range of resources on finishing treatment, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.

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Koala Kids

Planning for your child’s end of treatment should also be cause for celebration! Koala Kids has provided Celebration bells at The Royal Children’s Hospital and Monash Children’s Hospital Children’s Cancer Centres. We also provide a Smash Cake or chocolate pizza and if given enough notice, can customise your with your child’s name on it.

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