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Ronny Allan
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply ‘wired’ that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn’t worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You’re not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective.
Warriors
I used to do that for a living so I guess I’m an automatic fit, right? Believe it or not, professional ‘warriors’ also worry about stuff but they don’t like showing it (one of the reasons there are serious PTSD issues happening currently).
Despite the protests at the use of ‘war’ metaphors, many cancer patients do see themselves as ‘warriors’. People probably label me as one but …… spoiler alert, behind my positive exuding exterior, there’s a man who has at times been worried about a problem which might decrease quality of life. We all worry but it’s the way we handle stress that is important. Not talking about it is never a good option.
I also think ‘Warriors’ can sometimes be complacent and for a cancer patient, this can be detrimental to their health. In a previous life, nothing was going to stop me getting on with life, nothing was going to stop me going to work, nothing was going to stop me completing my mission. One day, some of my co-workers complained about my constant sneezing, coughing and sniffing. I told them the only way I was leaving the building would be on a stretcher having lost consciousness or in a body bag. I said it whilst I continued typing up a report which was my mission for that day. I said it without any hint of joviality in order they knew that I was deadly serious. Little did I know that my ‘poker face‘ was just about to become seriously deadly.
We’ve all read the blogs and memes on Facebook…. ‘kicking cancer’s ass‘, etc etc. There’s even twitter handles, Facebook sites, blog names all with the word ‘warrior’ in the title. Nothing wrong with that, nothing wrong with having a positive attitude. The only thing potentially wrong with that, is becoming too complacent about the danger of cancer.
Worth pointing out that cancer may still kill you whether you are a ‘warrior’ or a ‘worrier’.
Worriers
I come into contact with a lot of Neuroendocrine Cancer patients, either from a thread in my group, my blog site or my Facebook site(s). I get a substantial amount of private messages from patients including on twitter. Many of them are from people who are ‘worried’ – these can often be the toughest conversations I have. By the way, despite having the largest private Facebook support group, I think patient support groups can add to worry if they are not properly moderated.
Sometimes they are frighteningly good but other times they are good at frightening. I wrote about some of the reasons here.
People have many different reasons for worrying, and there can be totally different factors involved at diagnosis than those surfacing during and after treatment. We worry about a diagnosis and what it actually means, we worry about the treatment we are given, and then we worry about the cancer coming back, this is all very natural. Some people have taken a considerable amount of time to get a diagnosis and their stress levels are already high. Some are young with a long life ahead of them, that is really tough. Some have young children and are worried about their future as well as their own including genetic aspects, that is also really tough. There are many other scenarios adding further layers of complexity to an individual’s situation.
I have no magic answer for someone who is constantly worried except to say that they must do something about it as it’s not a good place to be. I once dabbled in this area by writing an article with 8 tips for conquering fear, this was specifically aimed at my own cancer type but I guess it could apply to many others.
I followed that up with several other posts including “Don’t cross the bridge until you come to it”
Summary
I think there’s a fine line between being a ‘warrior’ or a ‘worrier’ and I believe many people flit between the two quite easily, having accepted their diagnosis, decided it was just another chronic illness and try to live life as best they can. Cancer can be a very individual disease, not just the different types and sub-types, but also stages, grades, pre-existing medical issues, age, gender. To add to the mix, I think it’s also true to say that how people handle the stress, how people cope is another dimension to be considered.
Many cancers are not as ‘black and white’ as a lot of people think, i.e. you are diagnosed, it is treated, you are observed, you are cured. Neuroendocrine Cancer is quite definitely a ‘grey’ cancer, i.e. many people take some time to be diagnosed, many are diagnosed at the incurable stage, the treatment regimes differ depending on the primary, stage, grade and many other factors, you are observed for much longer periods than the average cancer patient, perhaps for life, and for many, there is no cure.
For those with incurable conditions, the stress levels can be higher and for longer, potentially leading to other illnesses. The psychological impact of long-term cancer is a developing but as yet unmet need in the Neuroendocrine world and I suspect elsewhere.
For those who are predominately ‘warriors’, please don’t forget to look after yourself. For those who are predominantly ‘worriers’, the lead graphic might help put things into perspective.
Don’t forget the carers, caregivers or other descriptive labels for those who provide support for someone with cancer. I think a lot of these people can also be under some stress and are also worried, I certainly see this a lot in the Neuroendocrine community.
Take care all
Thanks for reading
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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As you know, most ( all?) NET patients on SST analogue therapy eventually face “escape” of their tumors from the drugs effects. To what do attribute the very persistent effectiveness of
SSTA in your case?
not sure I agree with your suggestion that “ALL” NET patients have recurrence or that the drug stops working. Do you have the study data which confirms this is the case?
Thank yyou for sharing
I am recently diagnosed. Pnet is my diagnosis. Had all the tests including the Gallium68 pet scan, and am off to see my surgeon in 2 weeks for the prognosis, though have already been advised it is likely to be surgery, due to familial history. I am neither a worrier or a warrior at this point. Just numb and disbelief.
After seeing the surgeon, it may well be different…….
Good luck with your appointment. My “10 questions” article might be useful
SO helpful ..THANK YOU Sincerely
June
I liked this title and needed to think about this. I, like you, am public about my incurable cancer and I mentor scared patients. Then I hear a fellow patient has died and the tears come and reality hits and I then worry what is my husband and my grandchildren going to do without me. I sometimes fall in a deep depression that lasts days until I find somehow I can be useful again. Last weekend was an emotional breakdown, the last two days I’ve signed protocols to get my cancer tissue into head researchers labs . . . My surgery was two months ago and I’ve gotten my rare SDHB Deficient GIST tumor tissue to ten lead researchers. I also fall into the PTSD side of things because I watched my father die of paragangliomas. Mine is an inherited disease. My son could get it. Thus the worry sets in but my aim is to keep reaching out to the researchers to “study us” and with that as a major goal of mine I can usually stay on the positive side of that very fine line.
yes, you bring another layer of complexity and I might update the article to mention hereditary stuff, thanks