A little over four years ago my husband Brendan was diagnosed with an undifferentiated pleomorphic sarcoma in his right femur. Our lives changed forever. We went from having a comfortable, carefree family life, that we had worked hard to achieve, to facing an unknown future and finally — losing Bren on August 31st, 2017. His cancer diagnosis shocked us to our core.
Many things have shocked and surprised me about cancer. As much as I thought I knew, it turns out I know nothing. Even now 4 and a bit years on from Bren’s diagnosis, I can only know how it has all affected me personally. Although I had been beside Bren every day, as he fought for his life, I can’t possibly know how it felt for him to be facing his own mortality, as the cancer ravaged his body. And I guess I will never really know how it has effected our children to see their father suffer all he endured throughout his cancer treatment. Maybe, one day as adults, they will tell me. Now there are the fears they face as they live their lives without him.
Reflecting on my personal experiences, these are the things I know now…
- Cancer can’t steal happiness
Even as it filled our life with trauma and turmoil, cancer couldn’t take our happiness. We were able to maintain a normal level of fun and frivolity, a lot of the time. It was important to us to do that for the kids sake. Our lives did became very limited toward the end though, even so, we were still a happy, grateful family. We didn’t want Bren’s end of life to become sad and morbid. We kept things as light and gentle as we could. We focused on kindness.
With everything cancer changes, it didn’t changed us. It did, however, show us things that increased our happiness in many ways: Brendan was still hilarious, people were and are amazing, we were and are loved beyond measure and we knew we were strong. Inspired by my amazing husband, the kids and I continue to be happy most of the time, even with such a great loss to live with.
Bren and I always maintained a sense of hope, good humour, a big love and an unbreakable partnership. And we have great kids. There was a lot to be happy about.
- Telling our story lessened our burden
We decided I would share updates on Brendan’s treatment and progress for family and friends through social media, early on in Bren’s cancer story. This lessened our burden in practical ways. We wanted everyone to hear all relevant news regarding our situation straight from us, so there could be no accidental misinterpretations or exaggerations of what was going on, as unfortunately, very early on, one of Brendan’s friends was mistakenly told that he had passed away; and we didn’t want that happening again.
Sharing Brendan’s updates removed the awkwardness of telling people about what was going on with him when we were out and about, or through endless phone calls during and after treatments. Our family and friends got all updates straight from us, as soon as we had time to share them, and the kids didn’t have to constantly listen to conversations about their dad’s cancer.
- We were busier then when we had a social life
Over the course of his cancer treatment Brendan underwent three major operations. The first was to remove the primary tumour from his right femur. The second was a resection of the lower lobe of his right lung — to remove a secondary tumour, and the third was an above the knee amputation of his right leg — to remove a very large recurrent tumour at the original site.
In the two years following his amputation, cancer treatments continued – we went into every operation, round of chemo, radiation and finally the immunotherapy trial hoping that that treatment would be the one, the cure. We continued to hope for a miracle to very end.
It was a busy blur of clinics, consults and treatments (at three Sydney and two local hospitals) with an oncologist, orthopaedic surgeon, radiologists, thoracic surgeon, clinical nursing consultants, nursing practitioners, ward doctors, treatment doctors, chemo nurses, palliative nurses, social workers, nutritionist, physiotherapist, amputation clinicians, councillors, blood collection, PET Scans, CT Scans and the trial professor and his team. Although it was exhausting we were grateful to have met many amazing people including other patients and carers, whose paths we wouldn’t have crossed otherwise.
- Fear doesn’t have to be your default setting
I would be a liar if I said that I haven’t had moments of fear throughout Bren’s cancer story. At his first consult with his oncologist he was told that his cancer was both treatable and life threatening. We knew that this disease could be life ending. But took faith in the fact that cancer was no longer an uncommon diagnosis and we have friends and family members who have beaten it. Although Brendan’s cancer was considered incurable we held onto the faith that it wasn’t always going to be. I decided that fear would not be my default setting. It was a choice I could make. I woke up most days and thought about what I had, and not what I might lose; I set my intention and enjoyed each day that I had left with my husband to it’s fullest..
- Some cancers just aren’t talked about
Thankfully most of us are aware of the more common cancers such as prostrate, bowl, breast and lung cancer. We also know of melanoma, leukaemia and lymphomas, as these are cancers that are more generally talked about. Sadly I had only a vague knowledge of sarcoma prior to Brendan’s diagnosis, not to mention that there are different types of sarcoma. As rare and uncommon cancers, sarcomas don’t have as high a profile, therefore they receive less funding. I have no idea about how research and funding work in general, but I imagine that if there isn’t as much public awareness around the lesser known cancers then they are probably receiving a smaller amount of funding than they deserve. That has to change.
According to the NSW Cancer Council 1 in 2 Men and 1 in 3 Women will be diagnosed with cancer before the age of 85. That is half of the men and a third of the women that we know. This makes it all of our business, as we don’t know which type of cancer will strike us or a loved one, if we or they are the statistic. So let’s start talking about all cancers. They all matter.
Live well friends and remember Brendan as the loving, kind and funny husband, father family man and friend that he was – he never stopped thinking that life was good and hope limitless