This is the tenth of Penny’s Cancerland essays. She was diagnosed with colon cancer in February, 2016. She had emergency surgery in February, followed by recovery, then 12 biweekly chemotherapy infusions beginning in April, and then an even bigger surgery in November, followed by an even longer recovery. One of the downsides of colon cancer, and treatment for colon cancer, is that it involves the colon (or rather, what’s left of your digestive tract once the colon has been removed). This makes it hard to give a complete and truthful answer to “how are things going?” in polite company.
This is the TMI essay that Penny hinted at in several previous essays. For those of you who really don’t want to hear about this stuff, you can stop here and wait for essay 11, or you can just skip over the second paragraph. As it turns out, this essay isn’t really about providing you with TMI about her situation as much as it is about how to manage information sharing.
I remember feeling miserable after surgery. When they slice you down the middle, the stomach muscles get very angry. Moving and doing anything hurt. The worst sudden seizing pain: sneezing! We won’t go into pain numbers again.
After such surgeries, you progress usually along the following diet steps: ice chips \(\to\) clear liquids \(\to\) full liquids \(\to\) pureed foods \(\to\) soft foods \(\to\) normal (with some permanent dietary restrictions). It shouldn’t surprise anyone that your output mirrors your input: your poo doesn’t come out in ice chips but it does takes a while to get back to anywhere near normal. I’ve lived with different amounts of my digestive tract removed and with an ileostomy (a loop of small intestines brought to the outside of the body to empty contents into a bag secured to your abdomen). So, I could write about poo management, the seven types of poop, poo bag explosions, super sore bottom sides, and raw ileostomy sites that burn like second degree chemical burns when any digestive output comes in contact with the broken skin which it inevitably does because -duh- it’s an ileostomy site. For long phases of my cancer journey I’ve battled these and numerous other issues related to poo. It stinks figuratively and literally! And I’ve had precious little opportunity to vent about it because all such bowel-related issues are pretty much on everyone’s TMI list. There’s just no pleasant way to talk about such things with anyone but the best of friends. So, rather than go into any more sordid and yucky TMI details about the battles with my bowels, I think it would be more helpful for more people to focus on how to navigate TMI – too much information – and deal with information management in general.
In short, everyone needs someone to know as much information as possible, but otherwise: less is more.
You need someone who knows your history, your allergies, what your pain numbers mean. When you are in surgery, knocked out by pain or by pain meds, or unable to talk because there’s a nasty NG tube stuck up your nose and threaded down the back of your throat into your stomach, someone you trust should be there if at all possible. It’s advised to actually have a person or two selected to be your official patient advocate. There’s a form for that and any hospital will provide it for you to fill out and sign. If you are that go-to person or patient advocate for a sick someone, I’m sorry but you have to buck up and do your best to answer all the questions, keep track of details, and listen to TMI descriptions from aches and pains to the consistency of poo.
Sometimes a spouse, child, or sibling is the obvious choice to be a patient advocate, but sometimes there’s isn’t an obvious person and you may be in a position to step into that role. One of my friends ended up being that person for a colleague at work. The colleague had some family but they were overseas. He had no significant other and desperately needed that go-to person as he battled cancer. My friend was amazing, responding to midnight calls for help, tending him bedside during the last days, taking care of paperwork, organizing his memorial back in his home country. If you are at all close to someone who doesn’t have an obvious patient advocate, walking along side that person and being their advocate is one of the most compassionate acts of service to a fellow human being that I can think of.
Whoever is your patient advocate needs to know as much as possible. For this person, there isn’t any TMI. In contrast, for almost everyone else the TMI border is easily crossed, though everyone has a different amount of information that they deem acceptable to share or hear. My advice to both the patients and to their friends may seem contradictory, but the guiding principle for both parties is to put yourself second and the other person first.
Patients
Decide how much information you are comfortable sharing with the different groups of persons in your life: family, friends, fellow workers, worship or religious communities, clubs or social groups. In our social media world, many folks choose to keep groups updated through a blog, post, or care pages outlet. When I got sick, Rand decided against the care pages thing. That makes everyone who wants information get or have access to the same information. Instead Rand made three email lists and sent variations of updates to each list. His updates were reportedly very factual without much commentary. Close friends and family got more frequent updates and the most details; colleagues at work got some but less. What/how much information does each group of contacts need or feel they need to be connected, support us, plan at work, etc.? Less is more. You can always include some note like: if you’d like more information, feel free to ask.
The care page blog option is great for some folks who don’t like managing multiple lists or who are used to having it all out there on social media anyway or who like to or are able to process through blogging. Some of our friends manage to put out series of inspiring essays during their illness-journey. Even though I do write and process sometimes through writing, I didn’t want the pressure of blogging about it all. I’m also pretty sure that not every person who has ever facebook-friended me wants or needs to know the details of my life with cancer.
You the patient or patient advocate are in control of the information, at least as it first launches beyond the doctor’s office or hospital room. If you need to share details of your health issues because that helps you feel supported and connected or enables you to vent and process, then choose your audiences wisely. Ask if they would like brief or detailed updates. Allow folks to opt in or out of information pushes.
If you are a very private person, accept that people who care about you, or have to deal with your absence, generally want to know at least a little about your health status. Radio silence, especially to the people closest to you, can feel like a slap in the face. Even though you are the sick one, lots of other folks might be hurting, too. If your illness will radically affect someone else, they need to know at the least the basics of your health situation. Determine what you are comfortable telling others and then simply add that you prefer not to share a lot of details at this time. I’m all for clarity either way. Whether you let it all hang out or play your cards close to your chest, be clear on what you’re sharing and know yourself why. Also, remember to let folks know if there’s anything you report that you do not want them to share with others.
Friends, Family, and Others
Create space to let the patient share as much or as little as she or he wishes. Don’t be pushy. Don’t be aloof. Don’t think you have a right to know or to know more, unless you are the designated patient advocate. When facing serious illnesses, some folks want to share lots of details and some don’t. If your sick friend ends up sharing about the care of his oozing wound or the fact that she had to poop 23 times in 24 hours, let them do so and wipe that TMI look off your face. No matter what they share with you, trust me, there are four dozen other things they are not sharing with you.
On the other hand, if you’re longing to know more and a sick friend or relative seems stingy with information, be patient. Let them know that you’d like to know how things are going and are open to whatever amount of information they’re willing to share when they are up for sharing it. Your desire to be in the know is not as important as the needs of the patient. They’re in the driver seat with information. Respect that. If you need information for specific reasons, then try to communicate that simply and gently.
If you are a close friend or family member, you might offer to take over information management at least while the patient is most sick. If time allows, have a conversation about how to manage information. You can always adjust things later.
This all sounds a bit preachy and my advice is certainly colored by my cultures and sub-cultures. Nevertheless, these suggestions are based on having been the patient, the patient advocate, and the “other” in various health-sickness journeys.
I’ve been fortunate to have the right types of people when I needed them:
- the friend for whom nothing is TMI
- the friend who frequently zips me short emails just checking in and completely lets me share or not however much I want in reply
- the small group of folks who support us with flowers and prayers
- the friend who just keeps sending cards with no expectation of reply
- a wonderful spouse who is my patient advocate, has every need to know as much as possible, and has put up with a ridiculous number of reports about poo.
If you can be one of these types of persons for a patient, offer to do so but don’t be offended if the patient doesn’t seem to need you to be that for him or her.
I tried to come up with a memorable, useful alternative phrase with the abbreviation TMI to help sum up this chapter. I failed, but here at least are key ideas to keep in mind.
Trust. Trust that others are genuine in their concern. Trust that the sick person is not sharing or withholding information as a form of manipulation or insult. I know that there are people who do use any power or influence they have (like knowing information) as a weapon or tool for other means. Some do this on purpose, others without a real awareness of what they’re doing. But I think we get further by trying to create trust rather than default to mistrust.
Mindfulness. Be aware of what the others around you need. Friends and family should consider how best to help the patient, including figuring out or accepting how much information that person wants to or needs to share. If you’re the patient, you may need to hear this at least once: You may be very sick, but you are not the center of the universe. Your children, parents, siblings, friends, co-workers, and others have a connection to you. Honor that as best you can.
Importance. Focus on what is most important. When I was hurting most, I could barely roll over in bed by myself. I certainly wasn’t online, managing information lists, or talking to anyone on the phone. What was most important was getting through the next hour, the next day, the next procedure. When I could manage an hour online, I focused on communicating directly with folks who needed information and those very close to me. As my recovery progressed, I was able to send out my own updates, re-connect with more folks, and write about my journey.
Information management is a small piece of the big puzzle when you are dealing with any length of stay in Cancerland or with any other serious illness. If you got off to a reactive, perhaps rocky start, don’t sweat it. Press the reset button and go from there. Folks will understand. If you can make some decisions about information management with your closest support team, that just makes the journey easier, helps reinforce the connections you have to all the others in your life, and, in that way, strengthens the friendships and the communities that support us.
After reading that we chose (in 2016-17) not to create a care page, blog, or FaceBook group, you may be wondering how we are now over 150 posts into this blog (first on PostHope, then moved to a separate blog and to CaringBridge when PostHope was shuttered). It was sort of an accident really.
By 2022 it was becoming clear that the on-again off-again chemotherapy treatments were becoming harder to tolerate and less effective, so we began investigating other options. Eventually we decided to do another “Big Surgery”, complete with cytoreduction (physical removal of any cancer that could be removed), removal of a part of the intestines that had been a source of repeated bowel obstructions, and the heated chemo bath and massage to get into all the nooks and crannies – basically a redo of the November 2016 surgery. By this point in the journey, many people were aware (to the level of the information management discussed in this essay) of Penny’s situation. I’ve lost count of how many chemotherapy treatments Penny had had (but I seem to recall taking note when we crossed over 100) or just how many times she had been hospitalized for one thing or another between 2016 and 2022. It was no longer possible to manage information primarily through a few modestly-sized email lists. I would not have even known who all would want to be on such a list or how to get all of their email addresses.
So we decided to take a different approach. Ahead of the surgery, I created a PostHope site, we sent email to friends, family, and colleagues to let them know how to access it, told them they could share the link with others, and we let people opt in if they wanted the updates. The original plan was to keep people posted about the surgery and the recovery afterwards. But then the surgery didn’t go as well as we had hoped, and the journey took a different path, so we continued to use the blog approach to keep people informed. It just sort of took on a life of its own, accompanying us through the ups and downs of recovery, clinical trials, blockages, hospitalizations, radiation, a feeding tube, and eventually hospice.
I don’t have good advice about what to do if this happens to you. I’m still posting, so I guess I haven’t yet figured out when or how to stop. But I do remember advice from a colleague sometime in late summer 2024. He asked how Penny was doing, and my immediate reaction was “Yes, I really need to write another update.” His response: “You don’t owe us anything.” I did end up posting soon after that conversation, but it was a good reminder to check with myself to make sure I was managing information the way we wanted, and not letting information management manage me.
On balance, I think we did it about right – for us and ours. If you find yourself in a similar situation, you will need to figure out the right way to manage information for you and for the people who care about you.