Nola's story of care

Nola cares for her partner, Nick, who was diagnosed with cholangiocarcinoma. She reflects on her experience as a carer, sharing the challenges, emotions and realities of supporting a loved one through cancer.

The feelings Nola experienced while caring for a loved one with cancer

There are so many emotions that come and change and circle around and mix up, it’s hard to put a finger on any one thing. The reaction to the first diagnosis of the tumour in the bile duct was shock. There had not been symptoms to suggest something of this magnitude was wrong. It was an incidental find, so it felt difficult to process. This was followed by major surgery, a six-month treatment of chemotherapy and clear PET scans. Three and a half months later the cancer had not only returned and grown, but metastasised. This time it felt devastating, and a sense of urgency and limited time felt quite overwhelming.

Support Nola came across during her experience

The service that has supported Nick and, thus, supported me specifically regarding biliary cancer has been Pancare. The counselling made available has been so valuable, giving Nick a confidential space where he can share his thoughts and feelings without worrying about the impact on those close to him.

Whilst I haven’t sought out counselling for myself, it has been helpful to know that there are a number of avenues through which I can access that support should I wish to. Pancare and other cancer services like Cancer Australia, plus carer support services, are available to offer that support.

In addition, having an early referral to the local palliative care team has been very useful. Their support in referrals to allied health services and advice regarding other local services that may be of assistance has been wonderful. They are there to support living as well as possible for as long as possible and to support changing needs over time.

Family and friends are also important supports to both of us and are in regular contact.

Hope guiding Nola forward

The cancer's progress had been stabilised, with some shrinkage of tumours and no further spread for a few weeks, but sadly tests indicate that period of stability is ending and the next stage of looking for clinical trials has begun. Current treatment is once-a-month immunotherapy.

The experience of cancer is different for each person and the length of time involved also differs. Over time the routine of life living with cancer takes on its own rhythm. Appointments, blood tests and treatment guide the diary. One of the main challenges for me is living with the uncertainty, hoping for positive outcomes, but understanding the statistics of this type of cancer. I try to plan where planning is possible but also try to be much better at accepting that there will be change and that I cannot control everything, and certainly not outcomes.

I try to practise patience, although not always successfully. A lesson for me has been that the impact of having cancer and having treatment has not always been what I expected and has brought other unexpected changes that I have needed to try to adjust to.

Words of encouragement from Nola

It may sound like a cliché, and others will, I'm sure, be saying this to you about looking after yourself, but it is true. Whilst you care for your loved one, and that care may mean taking on more roles than have been yours in the past, it is important to find what it is that brings you some emotional fuel for your wellbeing.

At times cancer can seem to run your life, but time out, taking a break and doing ordinary, or even extraordinary, things when the opportunity arises is important. Making the most of things, both for yourself and together.

We are all different in how we care. I have always believed that some people are natural carers and for others it may be a tougher role to take on. Be forgiving of yourself if you are not always your best self.

Treatments and new medicines are constantly being researched and evolving. Cures might not be possible, but living longer with quality of life could be. Keep hope and make the most of what you can.

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