My name is Kim. I live with my husband in northern Tasmania.
I was 54 on Friday 13th (!) May 2022, when I got a pain just below my sternum. I thought it was a hunger pain, because I hadn’t eaten breakfast. So I had something to eat. That didn’t help. The pain got worse.
By Monday, the pain was even worse. My GP knew I was sick and needed help. He called an ambulance. He didn’t know what was wrong, maybe my gallbladder. Later, when I received my NETS diagnosis, he researched NETS.
At emergency, I was constantly asked if I had had a big weekend. No, I hadn’t. I don’t drink. I was diagnosed with gastritis. I was discharged with scripts for oxycodone and pantoprazole.
By Tuesday evening I’d gobbled down all the endone. I couldn’t endure the pain. I returned to the same emergency department I’d been discharged from 24 hours before.
I had more blood tests. Something was wrong. An emergency doctor told me I had cancer. I had masses in my liver, stomach, spleen, and lung.
I was alone. Due to COVID, my husband wasn’t allowed in. I asked the doctor, “How long have I got?” Of course, he didn’t know. How could he? The doctor had a very sad face. I looked at him and said “It’s not that bad mate. I’m 54, little kiddies get cancer”. He said “You’re so strong” and started crying. Then the nurse started crying. I lay there looking at them. I felt I was in some sort of alternate universe.
I thought it’s really bad if medical professionals are crying. Then the nurse asked me, did I want some time to process this. I said, yes please. I came into hospital with a stomach pain. I’ve been told I have cancer. I think I’m dying. Yes, I guess I need some time to process this. I find her comment hilarious now. They did the best they could. They certainly had a lot of empathy.
I was still in pain in the oncology ward. This ward soon became a locked COVID ward. I was confined by myself in a room without visitors. The nurses were amazing but so busy. The chaplains visited me a lot.
I have bipolar. I was on lorazepam to cope. My pain and surviving the isolation took all my energy. Everything was bizarre. I’d come into hospital with a bad pain. I’d been told by a crying doctor I had cancer. Now I was locked in a room.
I didn’t worry about my cancer. The oncologists didn’t know what sort I had anyway, maybe Lymphoma. I had a CT-directed biopsy. On 31 May an oncologist told me I have Neuroendocrine Cancer. Like everyone else I’ve ever met, I’d never heard of Neuroendocrine Cancer. All I knew was endocrine meant hormones. He told me my cancer is Stage 4, Grade 2. He explained I can’t have my cancer cut out because there are multiple tumours everywhere. That sounded was very bad. That sounded like I was going to die very soon. I asked him how I long I had. He didn’t know. I really pressed him, he said 10 – 15 years.
I asked the oncologist why my initial diagnosis was gastritis. He said to me “When you hear the sounds of hooves, you think it’s going to be a horse. This is a zebra”. He also mentioned the Unicorn Foundation, NeuroEndocrine Cancer Australia’s (NECA’s) former name.
The first thing I did was google the Unicorn Foundation (NECA) and sign up to their newsletter. The NET nurse in Sydney emailed me in response asking if I wanted a phone call. I remember asking the NETs nurse – “how long have you got to talk with me?”. She talked with me for a long time. I was very scared and sad.
I rang our NETs nurse a lot and asked many questions. Questions included what actually is NETs, Chromagranin-A levels, Dotatate PETS, Lanreotide and PRRT. All our new NETs language. Our NETs nurse gave me a lot of information. This included keeping accurate records of scans. Like you are doing now, I read and reread the Patient stories, in particular those of Kate, David and Mark.
It would be wonderful to have a NETs nurse somewhere in Tasmania. We could have been given information about Tasmanian services and a NET Nurse could facilitate a local Support Group. Instead we had to navigate the system ourselves. We had to piece together an information jigsaw which not everyone can do. NECA runs a private Facebook support group. I joined this helpful, loving group which provides information and solace.
The nurse told us about a bi-monthly NETs support group run at the Cancer Council in Hobart. Unfortunately, it is now defunct due to lack of facilitator funding. So we’ve lost the little Tasmanian help we had. Our nearest face to face support group is in Melbourne. NECA also facilitates a monthly virtual online support group.
The Hobart NETs support group was on the next week. I was frail, not eating or walking well. We bravely went anyway. We met Denise, Geoff and his wife, and others. What struck us most was they were all healthy looking. However, as David, a NET Patient from the Consumer Advisory Group says – “lift the bonnet”. These cancer patients were pursuing careers, family life, hobbies, whatever they wanted to do. They were getting on with their lives.
The support group members were very welcoming and friendly. We didn’t know much. They asked where my primary was. I said liver. We didn’t know liver is a secondary. My cancer is of unknown origin.
The group members explained about Lanreotide. Yes, in Tasmania it’s free, we were told. They explained about further treatment options in Melbourne and about PTAS. We left encouraged and more positive. We also connected with the Cancer Council. We learnt about John Opie House. It is a Fight Cancer Foundation hostel in central Hobart. It is fantastic and cheap. Cancer is expensive. I’ve had to resign from work due to my cancer.
I continue to have 2 PET scans – FDG and Dotatate – in Hobart. I have Lanreotide every 28 days. The doctors weren’t sure what my lung mass was, so I had another CT-directed biopsy. I was hoping, in this order, my lung mass was 1) benign 2) NETs and being treated by Lanreotide 3) another cancer.
My lung mass wasn’t a NET. It was a different cancer, adenocarcinoma Stage 1. The oncologists were certain it would be a NET. I haven’t smoked nor had any predisposing environmental factors. I had no symptoms and my breathing was fine. I needed a lobectomy.
Being diagnosed with another cancer was really hard. I am scared of needles after psychosis in psychiatric hospitals. I was super scared of an operation. I cried when I was told. I cried everywhere, at the dentist, walking along the bike path, everywhere. I cried on the phone to our NET nurse. I didn’t consider contacting a lung cancer organisation. I have NECA.
NECA is always there for us. Recently I had a lot of stomach pain and trouble eating. Our nurse reminded me of an oncology dietician in Sydney who specializes in NETs. The dietitian recommended Creon, a pancreatic enzyme which has helped a lot.
At times our seas have been very rough. We exist on an island, physically and metaphorically. Sometimes we have been clinging to a surfboard, digging in with nails sharpened into claws. Our little heads have just been above the water, poking out of the sea.
NECA is a light house helping us steer our surfboard between the rocks. The light of current and departed patients help guide us in. While we remember Kate, Bernie, Mark and others, their light and advocacy shine brightly.
NET Patient Mark’s light shines particularly brightly for me. He was a Cancer Connect volunteer for NECA. Mark talked with me for 2.5 hours. He was so generous. I didn’t realise he didn’t have long to live. May my light shine brightly for others after I die.
I am unlucky to get cancer. I have NETs, a cancer no one has heard of. I am Stage 4. This means my cancer is inoperable and terminal. When treatment stops working, I will die. 500+ Tasmanian NETS patients have no Tasmanian NET nurse. 25,500+ Australian NETS patients share one Sydney-based nurse. Her position is funded by donations. Other cancer patients with other cancers benefit from government funding. NECA receives no government funding. This is not fair or equitable.
We’ve also had so much luck too.
I am so lucky my GP recognized I was so sick. Other NETS patients have been told it can’t be that bad or they are crazy.
I am so lucky I was diagnosed in 2 weeks. This is very unusual. My oncologist was aware of NETs. He knew I had NETs. Many NET patients remain undiagnosed, misdiagnosed, untreated and ill-treated for years.
I am so lucky I had the stomach pain in the first place! Without NETs, my lung cancer wouldn’t have been detected so early. By the time I had symptoms, it would have metastasized, eventually to my brain.
I am lucky I have bipolar. I never thought I’d say that. I have lived experience of coping with a chronic illness for 40 years. NETs is just another illness to carry around in my backpack.
I am so lucky my oncologist told us about NeuroEndocrine Cancer Australia. Many patients stumble into NECA eventually. I knew about NECA from day one.
I am so lucky NECA exists. I benefit from the expertise, knowledge and wisdom of the NET nurse and the whole NECA community. I am so lucky NECA has been working tirelessly on NETS research, advocacy and awareness over the last 14 years. Without NECA, my life and prognosis would be so much worse.
NECA is a lighthouse. NECA’s love, support, research, advocacy, and awareness shine brightly, guiding us in through the darkness.
