Rhi's story: adjusting to a new normal after cancer treatment

My son Connor was diagnosed with cancer at three years old. Thankfully he is currently in remission. Now that I finally have spare moments to breathe and reflect upon the whole traumatic journey of childhood cancer I have to admit that one of the most difficult parts was coming home.

When my son was diagnosed with stage IV neuroblastoma

At the time of diagnosis we lived in Collinsville, a small mining community in rural North Queensland. Initially we were flown to Townsville hospital. After three days and much investigation we were transferred to Brisbane via Royal Flying Doctors.

Our oncologist was up front from the start and told us that Connor’s protocol for stage IV neuroblastoma was aggressive and would take at least 15 months. He advised we wouldn’t be taking Connor home during any of that time.

Connor, two weeks before diagnosis

Connor, two weeks before diagnosis, January, 2014

As devastated as we were, I decided then and there that I wanted to create a new normal for our family – we also had our 18-month-old daughter Isla to consider. So we rented a house close to the hospital and filled it with donated and second-hand furniture.

I put Isla into family daycare one day a week. We explained our new home away from home to the kids by saying how lucky we were; we had two homes, one in Brisbane and one in Collinsville.

Juggling two homes and two kids  

During treatment when Connor was an outpatient we would all be together at our Brisbane home trying to live normally – away from the hospital and the reminders of childhood cancer. After a few months my husband Gordon started flying back and forth to Collinsville to keep our business running but the kids and I never returned home during Connor’s treatment period.

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The day Connor started chemo, February, 2014

The oncology team and support staff along with the Children’s Hospital Foundation volunteers became like a second family to us. Connor enjoyed going to hospital, he was never afraid or upset even though none of it was easy. He didn’t complain during many of the extended periods of hospital stays.

Over time I became so entrenched with our new normal of looking after Connor, along with managing his medical appointments and treatment routine that my desperate need to go home to Collinsville faded. In reality I was more devastated of what Connor was missing out on, and the life we once had. Just as the oncologist had said, Connor rang the end of treatment bell after 15 months in Brisbane. After removal of his central line we excitedly packed our car and trailer (we had accumulated a bit of stuff) and drove the 16 hours north to our home in Collinsville.

At home at last – but it wasn’t the same 

Entering the house was a bit like a time warp – nothing had changed as only Gordon had been living there for short periods of time. The house was exactly as we had left it nearly 16 months earlier when I had rushed out the door with Connor and a small suitcase.

Connor after BMT with a virus, September, 2014

Even though we were very happy to be home together as a family, it once again took a while to get used to our new life and routine. A big part of me was still so sad, everywhere I looked were reminders of what our life had been like before diagnosis – we had been so happy, carefree and confident of our family’s future. I became very anxious and worried constantly about so many “what ifs” regarding Connor’s wellbeing … What if Connor gets sick? What if he gets teased at school because of his hearing aids? What if he struggles to make friends?

And then there was the constant guilt … Why aren’t I feeling happy and grateful? What about all the other families whose children didn’t get to come home? Am I giving Isla enough attention?

For the first time in months I also felt very alone. My routine had changed once again, Gordon was back at work full time, I was pregnant with our third child and in sole charge of two children – one who had been seriously ill and was still dealing with side effects from treatment. 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 – I missed my ‘oncology family’.

Connor gets the all clear in his last review, April, 2018

Those first few months back home were quite a daunting time for me as I fought off sadness, fear and loneliness. I wanted to talk about my fears, feelings, and Connor’s health. But at the same time I felt that I couldn’t burden my friends anymore, that I had to stop talking about cancer because we were home and Connor was thankfully in remission. I felt it was hard for people to understand that even though Connor had come home from hospital with no evidence of disease there were still so many hurdles for him and our family. We would never be a normal family ever again.

Finding a new home and embracing a fresh start 

I had to remind myself every day to be grateful and look towards a positive future, not back on what we had been through. I believe Connor’s three monthly checkups in Brisbane were a good start of the healing process for me. I would look forward to walking into the hospital, feeling the security blanket of the oncology team surround us. It felt like I was back to something I knew and close to the people that saved my son’s life – when I was there I was able to push aside all my fears especially when they would give me the good news that Connor’s tests and scans had thankfully come back clear.

Rhiannon, Connor (8), Freya (2), Isla (6) and Gordon, August, 2018

Six months after we returned home, we decided to relocate our family to a bigger town nearby. It was a new home and a fresh start for all of us and couldn’t have come at a better time. Since then everything has slowly started to fall into place. Connor transitioned well into his new school where he has made friends and Isla settled easily into daycare. I became so much more positive and less anxious as we were close to the airport, had access to medical services, OT, speech and other specialists as required.
It has now been two years since that move and we are going great, Connor and Isla are both loving school and Freya family daycare. I have gone back to work part time, which is wonderful for my wellbeing and confidence. We have a caring group of friends who stand by us and support us when we are trying to make a difference by raising money and awareness for childhood cancer.

As I sit here thinking and writing about coming home from hospital with Connor and our family, I believe I possibly suffered, and maybe still do, from PTSD as it was such an emotionally difficult time for me. Support from my close friends and family who have been by our side the whole way has been my saviour, along with Connor continuing to stay healthy and being the best big brother he can to his two gorgeous little sisters.

If you are looking for resources to help you going home after cancer treatment, Cancer Advisor has a range of content on support services.  And if we have missed something, please let us know.

However, Cancer Advisor is also looking for more content from families who live remotely. If this is you please share your own story or recommend a resource.

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Comments

Adry Awan

What an inspiring story illustrating the strong bonds between a family going through their incredibly difficult journey with childhood cancer. Thank you Rhiannon for generously sharing your experience in supporting Connor every step of the way, and painting an honest picture of what it is like coping with a ‘new normal’.

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