My name is Wendy Bagley, Caloundra, QLD, I am 68 years old and have Neuroendocrine Cancer (NETs).
I feel my journey started back in 2014, but who knows what was mixed in with that?
Below is a timeline of my journey through from diagnosis to the present day. Currently as part of the Neuroendocrine Tumour National Action Plan, NeuroEndocrine Cancer Australia are asking the government for 8 key asks to improve the lives of patients and push for earlier diagnosis. Although educating healthcare professionals and the general public about the disease is too late for me. I advocate for this to happen so that no future patient has to go through what has happened to me.
My silent motto I say in my mind is “Think about it, but don’t worry about it”.
I am happy😁. Please read my story knowing that in future, this is experience is preventable. We have a solution at our fingertips. We just need to cut through the red tape secure funding so all cancer patients are treated equally, and diagnosed just as promptly as each other.
2014
Left ovary removed, described as “mush”, diagnosed as endometriosis.
May 2017
I started coughing when I was out walking the dogs.
My husband also said my pee smelt.
Have a urine test – my GP advised results were all good.
Sent to gastroenterologist – findings were everything was normal.
Had X-ray of chest – showed a spot on left lung.
Went to cardiologist had stress test- results were normal.
Cardiologist sent me to respiratory physician for spot on lung.
Did lung biopsy, but could not reach lymph nodes. I was advised by specialists that the results were back in and I had Carcinoid tumours and that this was “not cancer”.
Sent to Cardiothoracic surgeon – had lower left lung lobe removed.
Report from pathology – did not show any signs of neuroendocrine tumour.
Mid 2018
Six days in hospital with pericarditis (inflammation of the lining around the heart)
Sent home – No reason why.
December 2018
Had a fall in garden, after being misdiagnosed for a month, I had a nerve pinched in my lower back and had to have a lumber discectomy.
May 2019
Having massive spasms on my lower left side.
Went to physiotherapist, after a couple of treatments, he said something is wrong go to G.P. and get a CT scan.
Sent to have a bone density imaging – showed problem with bones “probably cancer”.
June 2019
Went to oncologist had bone biopsy in ilium bone on right – was advised this is Cancer.
December 2019
Went to BRWH for a Dota GA Dota torso Scan. This is when I was officially diagnosed with NET Cancer. I was told my insides were like a Christmas tree. Cancer had spread from my lungs – this is why I had a Cough.
NET on my left lower rib bone – this is why I had the spasms
NETs on lymph nodes around lining of heart – this is why I had pericarditis
I also had a NET on my liver and spot in Frontal Lobe.
20 December 2020
Went to RBWH first course of PRRT Lutate treatment it is, (the radiation attaches itself to the cancer), 3 treatments over 10 weeks and PET Scan the next day of each treatment. My body lit up like a Christmas tree.
Still having massive spasms on the left rib area, tried everything, acupuncture, Valium CBD Oil, Endone plus – nothing worked to ease my symptoms.
February 2020
Sent to oncology radiologist, had five days of radiation directed to left lower rib. Worked ok but the pain flairs started, in my shoulder, under left ribs and left breast.
Second treatment of PRRT Lutate, when I got out of the chair I had no pain anywhere. I thought “how cool is that?”. The next day I had a PET Scan where I was told the “radiation is sticking to the cancer” I was feeling really positive. Although I have put on a lot of weight around my waist.
Had my last PRRT Lutate and scan treatment – results things are slowing down and shrinking. Then told let’s wait and see for 6 months.
20 December 2020
Had massive pain in my groin area. My first thought was “What now?”
25 December 2020
By Christmas Day I could hardly walk, the pain was getting worse.
27 December 2020
Went to private hospital emergency via ambulance. I was told they could not do anything because of the NETs cancer gave me panadeine forte and sent home.
29 December 2020
Got another ambulance to SCUH, they did an X ray. This Xray showed my pelvis was snapped in half. As the break was a ‘clean break’ they could not do anything.
Later I discovered the break was caused by the radiation to my ribs that weakened the bone.
It took about 3 months before I could walk, and the bones stopped clicking.
Still know it is not stable.
April 2021
Started Second set of PRRT Lutate treatment and PET scans.
After my third treatment, I had a “wait and see” for next 6 months, as everything was doing as it should. Great.
January 2022
Went to Brisbane for a PET scan – result, everything great no changes.
Christmas trees lights are reducing and radiation still working on the cancer.
Bloods results came back – All good
Heart results came back – All good
Urine results came back – All good
Life – is good.
18 May 2022
Recall from Queensland breast cancer screening.
Cancer in right breast, unusual cancer and grade 2, not NETs.
28 June 2022
In hospital had a right breast mastectomy.
I have no history of breast cancer in my family.
July 2022
Went to oncologist as a pin head size piece of cancer escaped.
“Told wait and see”
When I have my 6 monthly PET scan with my NETS, they will check my breast at the same time.
I am again ” thinking about it, but not worrying”.
I was relieved to hear about NeuroEndocrine Cancer Australia, it was one of the oncology nurses that told me about it, when I was having treatment in Brisbane. From their website I found I could join the private Facebook page , so I did, and the one and only nets nurse rang me and welcome me, we had a lovely chat.
I used facebook a lot in the early days, as this being a rare cancer you felt very alone. I found it great to read other people’s stories similar to mine and as time has gone by, I have been able to give suggestions to others or just let them know you are thinking of them on their journey. I have also watched the webinars, we had live stream with the NETS Nurse and a specialist talk on a subject related to NETS. It has been a wonderful journey with my NETS family.
Twelve months ago, I decided, life is short, and I am 67, I am going to get a tattoo.
So, on my left arm I got a tattoo of a unicorn that I call ” Netty ” and “Never Ever Give Up” writing above Netty.
Then I had my eyebrows and eye liner done.
I have never worried about any of my cancers, I just take every day as it comes.
I love gardening, walking our dogs and taking them to the beach, watching our grandsons play rugby league, and watching our beautiful children reaching their goals in life.
I am carer for my husband.
AT THE MOMENT LIFE IS VERY GOOD.
Thank you for reading my story. NEGU 🦄
