David shares his story as part of the Kindness Pandemic Project
I have Neuroendocrine cancer. No one should feel alone and this is my #CancerKindness story.
If it helps people to understand, I have the same cancer as singer and queen of soul Aretha Franklin and Apple CEO Steve Jobs had although it is still widely incorrectly reported that he died of pancreatic cancer.
On July 31, 2018, after being misdiagnosed and looking for answers for 3 years, my world changed forever. On this day, I was told I had cancer and 6 months to live. Terminal. It was later explained I had neuroendocrine tumours (NETs) with innumerable hot spots, active disease within the body of the pancreases and very extensive hepatic metastatic disease. Stage 4, inoperable and incurable. I remember trying to process all those words for months. I was numb. Sometimes people call NETs the ‘you look okay cancer’. I say to them, ‘you should lift the bonnet’. Like most patients, I have good days and bad days.
I am not a father. I have never been married and I am not partnered. My career was my happy life. Due to circumstances, I now live in a rural NSW town and am relatively isolated from friends and medical treatment. I also provide care for my elderly mum. Being a single man turning 51 with cancer, who happens to be gay and living in a rural area can add an extra layer of loneliness. Initially it was a struggle to find emotional and mental support together with navigating the health system and researching a disease that I had never heard of before.
I discovered the NeoreoEndocrine Cancer Australia website and spoke at length with the foundations NETs nurse. Kate’s incredible knowledge of such a little-known or talked about cancer along with her compassionate manner got me through mentally the next few weeks. NETs cancer is extremely complicated and I can’t see any oncologist. Kate does outstanding work in keeping me and all Neuroendocrine cancer patients informed and updated on latest treatments and research and is also the ‘go to’ person when questions need to be answered fast as it’s not easy to simply pick up a phone and talk to a specialist. With Kate’s kindness and understanding, I started to feel I wasn’t alone. I now had some hope and direction.
I then attended monthly Neuroendocrine Cancer support group meetings organised by the foundation which were over an hour’s drive away for me, but I quickly learnt it was worth the travel. The group inspired me to move forward after listening to members unique stories of strength and coping strategies with this insidious cancer. Here I learnt who the best medical people are in the field, the cancer medical jargon and so much about my cancer but importantly how to be my own advocate. I no longer felt alone. My support group is run by a volunteer who is also a patient and through this, and with her own medical issues, advocates for all of us. I am constantly grateful for the kindness and support I have received. COVID has greatly impacted on face-to-face meetings and I now Zoom in to chat online. It’s not the same but at least I am still very much connected.
In 2019, I started 32 weeks Peptide Receptor Radionuclide Therapy (PRRT), a form of radiation. I had it with oral chemo. A special mention to the Nuclear Medicine and Oncology nurses, doctors and reception staff at RNSH who really do such incredible work. I’m on first name basis with most now and never feel like just another cancer patient. They all know my interests and we chat about those during procedures. Such beautiful people and their professionalism and gentleness shines.
I drive myself to all appointments, scans and treatments. On my first day of PRRT at hospital, I met another patient who was having the same treatment. She was having her last round. I was scared. It finally hit hard with me when the cannula went in and the process was explained again but it was more the feeling of loneliness with the stark white walls together with a very clinical environment and knowing I was now on a cancer ward. I was thinking, “It’s more aggressive and this is serious treatment with no guarantees”. Things suddenly got a whole lot more real.
I could not help but cry for a few seconds (I still randomly do) but this patient was a sparkle in the room of 3 others where we waited for our infusion. We talked about many things, our lives and dreams and not just cancer, but it was her warmth, concern, along with her positivity and laugh out loud stories that got me through that day and many after. Her energy was infectious. I think, when we could stop talking, or one of us was seen by a doctor or nurse, we visualised a place that was nice to be in our head and not in an isolated nuclear medicine ward about to be intravenously zapped. She taught me things and I heard her tell another patient to try that too. Take your mind away, she said. The 7 hours flew by until I needed another scan at the end of the day, and we said our goodbyes. I told her how lovely it was to meet her. On return to my hospital bed, there was a note on my laptop. It simply said ‘Please call me and stay in touch x” with her phone number.
Of course, I called the next morning before I left Sydney. She invited me to have a coffee at her home which was not far from my hotel in Chatswood. Such a lovely gesture and I will never forget her hospitality. As a complete stranger, she then offered for me to stay at her house with her husband when in Sydney for treatment. I was overcome by her generosity and kindness. A very special lady. Since then we have caught up many times for lunch and dinners, and even in the country town where I now reside when she was passing through one day. We are still in touch via messenger, phone and text and try to catch up when I have scans or treatment. A chance meeting but still connected and we actually met again this afternoon after my 3 monthly PET scan and had a lovely chat. She always makes me smile and I just feel so connected with her. I left her house today, as usual, feeling so positive about life.
And then there are the other people who just ‘get it’. Other NETs cancer patients. My new family. They are friends I have met via support meetings and from the private discussion group. Some I have never met in person but we still have a strong connection and we are all on this unpredictable cancer journey together. From coffee chats to lunches to airport pickups if Im visiting their city, to days out or just friendly banter. Sometimes its the need for advice or getting through ‘scanxiety’ but importantly, there is always an avenue to vent, whinge, cry and laugh. I’m doing ‘this cancer thing’ alone, but I know I’m not alone. These people make me appreciate the ‘gifts’ that come my way.
When I can travel, I like to meet other Neuroendocrine patients especially if they live remotely or without direct support networks from other NETs patients. Recently, I met another lady with a similar diagnosis. “On occasions at 3am in the morning and when no one is around and feeling alone, and sometimes unwell, I jump into the group just to read messages. It’s extremely comforting and it really is the kindness and honesty of others in the group that gets me through those nights”, she explained. I can totally relate. I would be lost without the foundation and peer support – remotely or in person.
Any day, and at any time, my symptoms now seem ‘normal’ but they are far from normal. I pretend and put on a happy face like many other cancer patients. My condition is what it is, but for me, navigating the system in the early days was the key and the foundation, along with the people I connected with helped me so much with this. I am now seeing a NETs expert, having the best treatment that is available and knowing there are no guarantees, I am living life as much as I can. While always remaining positive, I know there might not be a ‘remission’ for me and unless a cure, I will always be on “watch and wait” in one way or another. I have somehow accepted that and learnt a greater courage. I know what really is important in life and what is not. I am appreciative of the little moments that really do make me smile. I know how to laugh more while adjusting to a new life that I never expected and through this knowing I am not alone and supported.
Cancer took away so many things from me but I will keep moving forward no matter how many obstacles and I will never give up. I continue to meet the most wonderful people, unfortunately with cancer, and some are quite sick, but still somehow manage a positive outlook on life. My future is uncertain and I would not have coped so well without support and kindness. These are just some of the ‘gifts’ I mentioned earlier. I know it will work out.
Ayman Barbaresco, who sadly recently passed away, had a beautiful vision in that he never wanted anyone with cancer to feel alone and so the Cancer Kindness Campaign was born thanks to his , efforts, insight, and skills. “Everyday kindness could be the difference between someone surviving and someone thriving”.
Ayman’s project is very special and close to my heart. XO