Ruth Else

“A Deep Breath” by Ruth Else

2019 marks a very special year for me, one I never thought I would see when I heard that my biopsy results showed cancer. The year was 1999 and I was very, very sick. I weighed just 45kgs, had no energy and struggled to breathe. I was flown to Perth from the North West with a provisional diagnosis of TB. I didn’t know what was wrong with me, just that something was trying to kill me.

Everyone is floored by the word ‘cancer’. We seem to equate the word with certain death and the word punches us breathless. I don’t remember hearing anything the specialist said after that word, the shock was too great. When you first hear that you have cancer, your whole world shifts. And just like getting off a rocking boat, it takes time to feel secure enough to walk into the unknown area of treatment and information.

Three weeks later I had surgery to remove my right central lobe and the adjacent lymph nodes. The pathology results came back: neuro-endocrine cancer. I was told it was a rare cancer, even rarer in the lung, but a slow grower that had probably been there a long time. No one seemed to know any more about it and surgery was the only option as far as I knew.

I went back home to the North West and recovered fairly well over the next year. I was 35 years old and the mother of a toddler, so life was busy. Once a year I went down to Perth for a chest x-ray and the 24-hour urine test and after five years was declared ‘cancer free’. We moved to Perth and then in 2005, with another toddler to care for, another shock.

I had a bad fall and injured my back. I was sent for a MRI to assess the damage and the doctor did the ‘good news/bad news’ thing. My back injury wasn’t as bad as first thought, but there were tumours in my liver. The shock wasn’t as bad this time, I think I had always thought it too good to be true that the cancer was completely gone.

The only symptoms I had were vague (tachycardia, diarrhoea without reason, urticaria, getting hot after eating a big or spicy meal) and I didn’t mention most of them to any doctor. Now I suspect that I’ve had carcinoid syndrome since I was about 24 years old.

This time I had more extensive surgery to remove the tumours from my liver. Recovery was much harder and there are, naturally, ongoing issues. But the disease hadn’t spread and the surgery gave me many good years of raising children and having lots of adventures.

I’ve been on regular monitoring with Gallium 68 PET scans and CgA blood tests since 2005 so when small metastases appeared in 2014 it was more annoying than shocking. It took a while to get my head around the idea that these ones couldn’t just be cut out, some other form of treatment was necessary. Oddly, it was almost a relief when the ‘lights went on’ as it was always a real stress time the month before the scan and in the waiting time for results.

I’m on Lanreotide now and take Creon and a Vitamin B supplement as I became very malnourished after three years on Lanreotide. I do my best to keep active and still teach one morning a week. I’ve got dreams and plans for the future and so am very determined to do all I can to live. That means that I am my own ‘patient advocate’ for the best possible care.

The best piece of advice I feel I could give to someone who has just been diagnosed is to allow yourself time to get your feet back under you- rest, eat well, walk in the sunshine, savour life, breathe deep. Sure- cry, throw at tantrum at Misfortune, but treasure your family and friends. Make them feel better, help them cope so that they can help you when the next step comes. Grieve for your loss of the health you once took for granted. Take some time- the cancer can usually wait. Then, after the shock wears off, that’s when the Unicorn Foundation is such a big help.

I’ve been able to talk to the best NET nurse in Australia (love one over here though!), the booklets have been a great help educating me (and any health professionals I can persuade to read it), and I’ve found a connection via Facebook and in support groups with other people who totally understand what it means to have NETs. The Unicorn Foundation has helped make this part of my NETs journey so much easier.