I had a jab today, oh boy. I have a jab every four weeks. Lanreotide is a drug you may not be familiar with, but it\u2019s designed to quell neuroendocrine tumours (NETs) secreting hormones into my system. You might not be familiar with why anything secreting hormones into your system would be problematic \u2013 even when it\u2019s serotonin, the happy hormone, that we all want coursing through our brains.<\/p>\n
You don\u2019t want this hormone dancing through your guts because it will affect your liver, heart and any organ, and eventually your bones and brain, and then it\u2019s game over. This monthly jab, after a surgery in summer 2024 that removed five malignant tumours in my GI tract as well as a third of my colon, 2ft of my small intestine, my appendix and all the lymph nodes in my stomach area, should stop that damn hormone\u2019s dance for now and allow me to keep on functioning for the foreseeable. That jab, I am told, is my future, unless other, nastier discoveries are made in the biannual scans I am scheduled to have for the remains of my days.<\/p>\n
I am so thankful for that jab.<\/p>\n
The reason you won\u2019t be familiar with serotonin being a hormone of horror in our guts is because NETs are a rarity. They grow slowly and are misdiagnosed with regularity. In my case, over the past decade I had been told that my symptomatic facial flushing was down to rosacea, my near-constant diarrhoea was down to IBS, my declining sporting prowess was a result of ageing, my increased asthmatic wheezing was a mystery, and my general fatigue a result of life stresses. All of which were wrong \u2013 the symptoms mentioned above are typical of neuroendocrine tumours. I had the aforementioned growing inside me for many years and, if I hadn\u2019t requested a colonoscopy, they might still be undetected. And I could be fatally inconvenienced.<\/p>\n
The late Tommie Gorman, a stalwart of RT\u00c9<\/a> since the 1990s, highlighted this cancer<\/a> because he lived with it for nearly 30 years. He fought for the range of treatments specific to the condition to be brought into this country because when he was diagnosed he had to go abroad, to Sweden, for therapy.<\/p>\n Within the NET community, he was the poster boy, campaigning throughout his illness. He was partly responsible, thankfully for people like myself, for those treatments all now being available here, between St Vincent\u2019s<\/a> and St James\u2019s<\/a> hospitals, with a satellite centre in the Mercy in Cork. (For more information on neuroendocrine cancer, see neuroendocrinecancer.ie<\/a>).<\/p>\n So how and why did my GP not think my symptoms might be cancerous?<\/p>\n Because, it seems, NETs are not on doctors\u2019 radars. The disease has not made it to the general population\u2019s consciousness and, as a result, people like me are often misdiagnosed until they have a body full of cancer.<\/p>\n I have this jab every four weeks, and for the most part I feel okay. I will administer it to myself for the rest of my life or until the disease decides to raise its head again, and further surgery may be required. The prognosis, though, is good. I\u2019ve been told \u201cthis is the best worst news you can have\u201d, because the condition is treatable. But my experience was one of complete stasis when presented with a variety of factors that point directly to this condition. I had all the big symptoms: diarrhoea, facial flushing, abdominal pain, fatigue and chest issues, and yet the dots were not joined, and every symptom was dealt with individually and ineffectually.<\/p>\n Let me move beyond that, however, and ask a question. When I am confused about a decline in my physical abilities, why do I feel guilty about going to a medical provider about my condition? Why, in a society constantly touted as one of the most wealthy and advanced, does it still feel wrong to state: I feel weak and I don\u2019t know why?<\/p>\n Year after year we hear about increases in suicide, particularly in men. When we go to our GP, we stall and confess the minimum of discomfort, and hope our doctor can read our mind and prescribe more than medicine for what ails us. Because God forbid we admit to weakness, pain, confusion or despair. Inevitably, we store the best for last and wait, as we are backing out the door, to say: \u201cOh, while I\u2019m here, would you mind taking a look at this?\u201d We are terrified of causing concern to the point that we will risk our lives to avoid it.<\/p>\n This combination of male (and I\u2019m speaking on my own behalf here \u2013 it may be a female habit too) inability to admit weakness, GP desire and financial need to assess and prescribe immediately, and everyone\u2019s fear of causing inconvenience is causing this nondiagnosis of certain illnesses.<\/p>\n I had tumours growing inside me for years. I knew something was wrong for years. I monitored my own health and witnessed its decline through the use of heart-rate monitors while exercising and apps designed to measure cycling and running performance.<\/p>\n Yet, even when I knew something was afoot, I ignored it because it was easier than admitting: \u201cHang on a sec, I\u2019m in trouble here.\u201d<\/p>\n Don\u2019t do that. Shout if you\u2019re hurting. At your doctor, at your friends, at your therapist, at the man in the street if need be \u2013 but shout and get the help you need.<\/p>\n","protected":false},"excerpt":{"rendered":"I had a jab today, oh boy. I have a jab every four weeks. 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