My Husband's Brave Battle With An Incurable Disease
At the start of last year, my husband Michael and I should have been looking forward to exciting new plans ahead.
We had been together since we were just kids. We had raised three children together and had just celebrated the last one graduating tertiary education. We were looking forward to a new chapter.
Then everything suddenly changed. Michael was diagnosed with a very large Neuroendocrine Tumour (NETs) on his pancreas that had metastasised.
He was only 50. There was no preparation for the battle that was to follow.
Neuroendocrine tumours, or NETs, is an umbrella term for an extremely rare type of cancers. They make up only about two percent of all cancers, but there has been increased awareness after the deaths of Aretha Franklin and Steve Jobs, who both suffered from NETs. While if caught early, the disease can be cured by surgically removing tumours, many patients aren't diagnosed until the disease has progressed past the point of remission, and can only hope to manage it with treatment.
When Michael was diagnosed, he was immediately scheduled for radical resection surgery to remove the tumours, along with the majority of his pancreas, spleen, left adrenal gland, and affected lymph nodes.
It was a surgery and recovery period that required the utmost of strength and determination to get through. We were grateful he was young and fit enough to take it on, and grateful for a very good surgeon who wasn’t afraid to operate in a bid to win the battle. We were also very grateful for the doctors' knowledge of NETS, and their fast action.
Most Neuroendocrine Tumours are indolent, or slow in progression. Although the surgery was successful in removing the tumours, the post-surgery pathology revealed Michael had unusually High-Grade Neuroendocrine Carcinoma (NEC) that was fast growing and very aggressive.
His disease was incurable, but high dose chemotherapy was recommended to start as soon as possible in a bid to stop further progression.
Then, one week into the chemotherapy, Michael suffered a major heart attack. He was rushed to hospital for emergency surgery to save his life. It was a terrifying experience adding another dimension to his recovery. During the last round of chemotherapy, he was hospitalised with the onset of diabetes. This was the result of having only a very small amount of pancreas remaining after surgery, and a side effect we had been prepared for. Another new aspect in his battle.
Six months into his harsh treatment, Michael was completely drained, and in the fight for his life.
I was suffering a degree of PTS watching on the sidelines, feeling totally helpless to take away his suffering. I was struggling with managing work whilst trying also to be a carer and a support. I worried about how our children were faring as they watched what their dad was going through.
We had the added financial worry of a sizeable mortgage with no Super, life insurance or income protection. We had lost more than half our income, and it was taking all our efforts to keep our small commercial cleaning business afloat with Michael unable to work. What was left of our business was crucial to keeping our home, and also the sole income for our son who suffers a debilitating congenital bone condition.
READ MORE: Why This 'Mo Is Doing Movember
READ MORE: In A Weird Way I Look At Cancer As A Gift
Our eldest daughter had moved back home from working interstate to be closer. Both of our extended families live interstate, and not having extra support close at hand was making everything so much harder to get through. Cancer really is a journey that affects a whole family.
Michael’s health was the number one priority. It was the hardest thing we’d faced as a family, but we needed to focus on one day at a time. We celebrated the goals reached by Michael’s courage, and tried not to let financial worries or fear of the future overshadow the precious time we had together.
We were very grateful for the family that had travelled back and forth to be a support in the dark times.
Despite how tough it was, we continued to do our best each day to make happy memories together, always being mindful of others who have lost their battle with cancer and weren’t fortunate enough have more time.
In January this year, after 12 rounds of chemo and monthly injections in a bid to try and control the growth of tumours, scans revealed that in just a short period of time, new tumours had appeared and they were once again very active and aggressive.
Michael was very fortunate to qualify for a round of Lutate Therapy/ PRRT which is still classified as a clinical trial treatment here in Queensland. We had heard some promising stories of success in slowing growth of this disease, and about the push for funding to make this treatment financially available in more cases.
It’s now 22 months on, and as I sit and write about this journey, I’m waiting at the hospital for Michael to complete his fourth round in this cycle of treatment. Although the treatment hasn't been easy on him, so far results appear to be promising. Due to how advanced his disease was at diagnosis, it is incurable.
But after all he's endured in this fight, we remain hopeful that this new treatment will buy him some more precious time by stabilising and slowing the progression of this awful disease.
Despite this being my personal record in my journey as a carer, I can’t even begin to imagine Michael’s innermost thoughts about what he’s been through, and what lies ahead.
I couldn’t be prouder of the man I married. He never complains about the pain he has endured, and he is an inspiration to everyone around him with his amazingly grateful and positive attitude.
He embraces every opportunity to live life despite how unwell he’s feeling. He’s never said ‘why me,’ but continues to put on a brave face, determined to make the most of whatever time he has. Somehow, he always manages to look well, with others never being able to imagine the extent of what he’s been dealt.
Our new chapter in life has been far from the one we had imagined only two years ago, but we are very grateful we still have a journey to continue. Of course, there will always be the worry about the future and what’s in store if this disease turns again, along with the lasting side effects of treatments and the financial strain.
But we continue to be grateful for the time and the opportunities to make happy memories together. We are very grateful for the ground-breaking research that has already been done to find treatments for this rare cancer.
Things may have been different if Michael’s cancer had been diagnosed at a much earlier stage, which is a common story with this disease. Unfortunately, his symptoms of abdominal discomfort, back pain, fatigue and flushing were quite vague for some time. As the figures show, 58 percent of people diagnosed already have advanced disease.
I can only hope that this story might trigger others to follow up thoroughly on any symptoms that might be worrying for them in a bid to decrease future statistics.
During this journey we managed to find the Unicorn Foundation website and support group, which was extremely helpful in understanding this rare cancer, making us aware of treatment options, and hearing promising stories of others battling the disease.
On November 10, NET Cancer Day aims to raise awareness amongst health professionals and the general public in a bid to decrease misdiagnosis and improve prognosis for NET cancer patients.
To help to fund research, treatments and support for patients battling NETs, you can donate Unicorn Foundation here.