No one talks about the “rabbit hole” that patients with cancer experience, even as time passes.
Once a person has been diagnosed with cancer, no matter how long it has been, there is always the slippery slope known as “the rabbit hole.”It could be triggered by an experience, or perhaps a symptom or test result. This is very much unwanted, but sometimes impossible to avoid a tendency to perseverate about something, oftentimes a concern about a potential recurrence. It is an emotional vortex that can grab onto a person and refuse to release its powerful grip. Sometimes it occurs because of a test result appearing on a patient portal, which leads to patients attempting to interpret medical language of, for instance, imaging or biopsy results.
The reality is that communication and language used in medical charts (outside of electronic messages directly between the patient and their clinic) was really never intended for the patient to interpret on their own – instead it is intended for medical professionals to communicate with each other. All too often, patients may read their results once they are automatically released, thanks to new legislation which mandates this, but before their clinic has had a chance to communicate with them and explain what it means. Sometimes there are findings which will be unwanted or unexpected, and this can very often lead to internet research about what it might mean.
This is definitely a double-edged sword. The internet can be a wealth of knowledge, which can be very helpful as it can provide a place to start when confronted with an unknown situation, or when looking for camaraderie or a community of people who have similar experiences. The flip side of this is that the internet also contains information that is inaccurate, or outdated and inapplicable to a particular person’s situation. While there are some good websites out there that have more up to date information, it can sometimes be difficult to decipher which sites might be more trustworthy than others. Especially when confronted with a brand-new cancer diagnosis or the possibility of a recurrence, the temptation to turn to the always-available internet is impossibly hard to resist.
I did this when I was diagnosed. My situation is a bit unusual, since I am a physician, and I can interpret medical jargon. This also means that I MOST DEFINITELY know better than to turn to the internet for information, especially right at the initial period of diagnosis. And I STILL did this. Now, to be fair, for methis was the period of time after a biopsy result and before my initial appointment with the specialist, before I had a cancer care team.
As a bit of an aside, I personally think that this is the most difficult part of cancer, the time period between receiving a positive biopsy but before meeting with a care team and before coming up with a treatment plan. This leads to imagination running rampant with all the horrible things that can be conjured up when “the C word” is used. In my case, this was when the rabbit hole sucked me in and didn’t release its hold on me for far too long. The rabbit hole can lead to huge anxiety provoking episodes of catastrophizing and perseveration. It most certainly was emotionally traumatizing. I do have to admit that even after treatment ended, there have been a few times where I have slipped back into the rabbit hole, and although these episodes have become fewer and further between as time has gone by, there will always be the risk that this can happen again.
Fortunately, as I now have had a few times where this has happened and it hasn’t turned out to be due to a recurrence, I also have these experiences to draw on and inform my rational brain that despite the instinctive panic response, there is a very real chance that I am imagining a worst case scenario that may well not be reflective of reality and that I should try to sit back and get all the information before letting the primal fear take over. Because cancer has already taken too much from us, it is vital that we not let it steal more time, energy and effort that doesn’t belong to it.
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