We talk about surviving cancer as though it’s the finish line. You ring the bell, everyone cheers, and you move on. What rarely gets mentioned is that sometimes the treatment that saves your life also leaves lasting damage that deeply affects your quality of life.
I can’t tell you how many times I’ve heard this whispered in private, “I’m grateful to be alive, but if I’d known how damaged I’d be after radiation and chemo, how much it would limit my life, I’m not sure I’d have gone through with it. I’m not sure I’d have agreed to the treatment.”
Most survivors barely dare to say that out loud, but we sometimes share it quietly with each other. The world assumes that once you survive cancer you’re beaming with gratitude, you live a wonderful life, and everything goes back to normal. What people don’t see is what many of us live with afterward.
Some end up with stents, feeding tubes, or ostomy bags. Some live with bowel obstructions, chronic diarrhea, constipation, or malabsorption that leads to malnutrition. There are fistulas and radiation damage that never fully heal. There is neuropathy, nerve damage, vocal cord paralysis, balance problems, hearing loss, or changes in memory and concentration.
Skin can become fragile and tear easily, and wounds may take far longer to heal than they once did. Bones can weaken, and joints can stiffen, making ordinary movement more difficult. Breathing may not come as easily as it used to, and the heart itself can be affected by treatment.
Hormones shift in ways that disrupt sleep, mood, and overall health. Fatigue is not occasional but persistent, and the immune system often never fully regains its former strength.
The daily reality can be far more personal. You learn that you need to know where every bathroom is before you agree to go anywhere. You avoid long car rides and carry discrete personal supplies. Some survivors are left with digestive damage that severely limits what they can safely eat, and that can make eating outside the house feel stressful instead of enjoyable.
You have to calculate how long you can stand, how far you can walk, and whether there will be a place to sit. Sometimes, you decide it is safer not to go at all.
Along with everything else, there’s grief. You miss the body you lived in before every ache and twinge meant something. You miss the freedom of saying yes without having to think through every possible consequence. You miss the person you were before your life had to be rebuilt around limitations, and you grieve the future you once assumed was secure.
There’s another layer to all of this, and that’s the financial side of things. Cancer treatment can financially bankrupt you. Treatment costs more than most people have, and the bills don’t stop when treatment ends. The complications that follow often require ongoing appointments, medications, supplies, and procedures that add up quickly.
Even ordinary things like going out to dinner, attending a wedding, or contributing to a group gift can become stressful decisions when money is tight. For many survivors, the cost of staying alive slowly erodes financial stability in ways that are hard to explain to people who have never faced it.
Cancer doesn’t just affect your body; it changes your personality in ways you’d never expected. You stop being spontaneous because everything requires thought, planning, and a careful analysis of whether you can tolerate the consequences. Do you have the energy? Can you drive that far or ride in a car that long? Will you be able to park close enough? Will there be a place to sit? Is there a restroom nearby?
Instead of saying yes with excitement, you find yourself saying, “Let me check,” because you need time to think it through. You hesitate, not because you don’t want to go, but because you’re trying to be realistic about what your body can handle. Sometimes you end up canceling when you realize it will cost you more than you can physically afford. Other times, you wait so long to decide that the moment passes, and the choice is made without you.
Some friends or family members may think you’ve become distant or negative. They may wonder why you’re still talking about things they believe you should be over by now. A few may quietly decide that staying close to you requires more effort than they want to give. Simply speaking, they quietly decide that you’re too much work.
They don’t realize that while surgery and radiation can leave visible changes to your body, it also leaves damage you can’t see. They don’t see the numerous complications that now dictate what you can do, how long you stay, and whether you can go at all. They don’t see that movement can hurt, breathing can be strained, and fatigue often gets in the way. They don’t understand that you’ve had to rebuild your entire life around staying functional.
There is also an emotional cost that lingers long after treatment ends. You do not simply forget what your body went through. The procedures, the scars, the burns, the vomiting, the needles; and that vulnerability stays with you long after treatment is finished.
When you feel a new ache, you immediately wonder it might be. Scans and follow-up appointments can bring a kind of anxiety that is hard to explain to anyone who has not lived it. And somewhere in the background, there is often a quiet panicky thought that you cannot quite silence; you wonder if it’s come back.
I’m not pretending that surviving cancer isn’t something to be thankful for, because it is. But that doesn’t mean everything goes back to the way it was. It doesn’t mean the damage disappears, or that life feels simple and easy again. A lot of us are learning how to live in bodies that were permanently changed, and we’re doing it while people assume we should just feel lucky and move on.
If you haven’t walked this road yourself, I hope what I’ve shared here makes it a little easier to understand. And if you have walked this road, I hope you know you’re not wrong for admitting it’s been hard.
You can be grateful to be here and still be honest about what it cost you. Those two things don’t cancel each other out.
It doesn’t matter if the ribbon is pink, or teal, or any other of a myriad of colors. It means another person has heard those heart-stopping words: You have cancer.
Once those words are spoken, disbelief does something strange. From that moment on, you barely hear anything else that is said. Or maybe you hear it, but you don’t understand it. You certainly don’t remember it. The words bounce around the room like sound effects in a movie theater, echoing without meaning, until everything turns into a kinetic blur.
And if you happen to be alone when those words are spoken, the first time you try to say them yourself, they come out one of only a few ways.
Sometimes they are choked out through sobs, leaving the listener struggling to understand what you are trying to say, only knowing that whatever it is has shattered you.
Sometimes they come as a low, gravelly whisper, barely audible, but powerful enough to silence the room.
And sometimes, you don’t say them at all. You keep them locked inside, afraid to even whisper the words you are certain you must have misheard, even though deep down you know they are true.
The unfairness hits hard. Why me? Reality hits. Why not me?
All the qualifiers the oncologist offers, “We’ve caught it early.” “The chances of getting this under control are promising.” “Surgery alone may take care of things.” They ring in your ears. But your heart and your mind hear something else entirely. They see the worst. The awful realization that your life might be ending, and that there is still so much you planned to do. Wanted to do. Needed to do.
The people you might be leaving behind. The good you always meant to do. The changes you intended to make. The challenges you believed you would someday meet.
All of it floods your thoughts and your body at once. It spins together into a blinding, hopeless spiral of the life you could have had, if only you had known.
But don’t we all know that life is finite? Fragile? And yet we are stunned when that truth becomes more real than we ever imagined it could be.
Reality is something we push aside while we live our daily lives. Sleep. Wake. Dress. Eat. Work. Repeat. Over and over, without much thought.
The plans we always meant to follow through on slowly slip away with each step we take and each quiet thought we set aside. The day-to-day cycle becomes the pattern. The pattern becomes everything. It spins until we barely recognize that there was ever anything else.
Until the word, barely spoken, speaks: cancer. And the pattern changes so quickly it disarms us.
Now the pattern is appointments. Recovery. Radiation. Chemo. Maybe immunotherapy. So much stops mattering. The world shrinks almost overnight.
Nausea. Retching. Exhaustion. Malaise. Shrinking. An endless fog of confusion. Alternating devastation and hope.
We live for the day this aggressive pattern ends. We wait to be finished. To be well. To continue our lives. We believe that once this is over, everything we dreamed of will still be waiting for us. But cancer always has the final word.
For some, life itself ends the conversation. For others, the collateral damage left behind by the disease, and even more by the treatment, forces life to be reordered. Reorganized. Reassembled. Reimagined.
The things we mourned when we first heard that word are no longer possibilities. We recover. We mourn. We go on. But we are never the same.
Regardless of the ribbon color. Despite the unpronounceable name that both specifies and reduces our lives. Not even when survival is the outcome.
We return to a pattern. A slightly altered one. Waking. Dressing. Eating. Working. Resting. Dreaming. A life reshaped by a single word that still echoes, long after it was first spoken: cancer.
It is not surprising when illness fractures a relationship that was already strained or unbalanced. In many partnerships, the now-ill partner quietly carried the majority of the invisible labor that kept daily life running. This often included managing finances, planning meals, buying groceries, doing laundry, keeping track of children’s needs, scheduling appointments, and holding the mental load of what needed to happen and when.
When chronic illness or cancer disrupts that arrangement, the imbalance becomes impossible to ignore. Tasks that were once handled seamlessly now demand attention and effort from the other partner. For someone accustomed to being taken care of, this shift can feel overwhelming. In the short term, they may step up. But as the reality sets in that the change may be permanent, frustration and resentment often follow.
Instead of recognizing the loss their partner is experiencing, some begin to frame the situation as a failure of effort. The now-ill partner is seen as no longer “pulling their weight,” rather than as someone whose capacity has fundamentally changed. Responsibility is deflected through familiar patterns. Help is offered conditionally, with statements like, “I’d help if I were given a list,” or “I don’t know what needs to be done!” Learned helplessness becomes a way to avoid accountability, even while walking past obvious work that needs attention.
What is often labeled as nagging is, in reality, an attempt to get follow-through on promises already made. When reminders stop, nothing happens. When reminders continue, resentment grows. Over time, this dynamic erodes trust and intimacy, not because illness has made one partner unlovable, but because the relationship was never built on shared responsibility to begin with.
What is harder to understand is when a strong, long-term relationship seems to inexplicably crumble. In these cases, both partners have grown comfortable with the way things were. They are accustomed to a familiar division of labor, whether it was truly balanced or not, it is their baseline, their ‘normal’ way of life. When illness disrupts that arrangement, the required shift can feel deeply unsettling. Tasks once handled quietly and reliably by the now-ill partner must be reassigned, and resentment can surface. The partner who is not ill often recognizes that the situation is beyond their loved one’s control, and even feels guilty for the resentment they cannot seem to prevent.
In the short term, most partners either step up or make arrangements for others (siblings, children, friends, hiring people to do jobs that the now ill partner once did) to fill in the slack. Most emotionally healthy people can handle quite a lot when they know it is a crisis, and is only for the short term.
But as the reality sets in that these changes may be permanent, the discomfort deepens. The unspoken wish becomes a longing for things to return to the way they were, back when their partner wasn’t ill, back when their partner wasn’t in pain or wasn’t so (understandably) needy. When that return to normal isn’t possible, some partners find they simply cannot cope with the loss of the life they expected and the comfort they once felt.
Many devoted partners remain present during the hardest moments. Like most people, they are often expecting a clear ending to the struggle. They imagine either a triumphant recovery or the tragic loss of their partner. They hope for the best, and steel themselves for the worst.
What even the most devoted partner is rarely prepared for is months, years, or even a lifetime of ongoing struggle. The moments of improvement feel like victories, but they are inevitably followed by setbacks that demand renewed endurance. It can be more than even the most devoted partner can bear.
Over time, even the most well-meaning partners can develop what might be called emotional fatigue. They grow tired of hearing about pain or witnessing ongoing suffering and protect themselves by pulling back. They may spend less time with their partner by seeking activities outside the relationship or home, or by retreating within the home into solitary distractions such as television, computer games, solitary hobbies, or scrolling. They invest less effort in the relationship, not out of cruelty, but out of self-preservation. Regardless of the reason, this withdrawal can feel like a profound abandonment to the partner who is ill.
This often leads the ill partner to become desperate for the closeness that once defined the relationship. The more they try to restore that connection, the more the other partner feels overwhelmed and the more they withdraw. The cycle feeds itself and deepens the emotional distance between them.
While it is not surprising when illness fractures a relationship that was already strained or unbalanced, the loss of what once seemed like a strong partnership can feel like the ultimate betrayal. For someone battling cancer or struggling with chronic illness, it can feel like being abandoned at the moment they are most vulnerable.
The hard truth is that there is no socially acceptable time to leave an ill partner, yet some partners feel they have no other option. Both experience profound loss, but in very different ways. The partner who is ill is left to carry grief, illness, and isolation all at once, often without the ability to rebuild or replace what was lost.
The partner who leaves must live with the moral weight of that choice, whether through guilt or rationalization, while forming a new life elsewhere. While they may seem incredibly happy in their new life, they may always have a silent guilt just below the surface that perpetually threatens their new happiness, and that keeps them from committing quite as much to their new relationship.
In the end, neither partner escapes unscathed. Illness reshapes both lives in ways neither anticipated, and the aftermath lingers long after the relationship ends.
Why Chronically Ill People Don’t Always Recognize a Medical Crisis
When the pain first started, I thought, “It’s probably just another flare.” I waited. I always wait. By the time I realized something was really wrong, I was already doubled over in pain, vomiting bile, and unable to stand upright.
That wasn’t self-neglect. It was conditioning; years of being told it can’t possibly hurt that much or comments that questioned if I might be exaggerating my symptoms. Chronic illness and the response we typically get from many medical providers teach us to second-guess our own pain.
The Pain Scale Paradox
Even the standard 1–10 pain scale trains us to minimize what we feel. With chronic illness, I’m never really below a five. But if I tell a nurse my pain is a ten, I’m often reminded that “ten is the worst pain imaginable” or “the worst pain you’ve ever felt.”
Well, I’ve had pain that would knock an elephant off its feet or make a quarterback sob in agony, but is this the worst pain I’ve ever felt? Not half! That’s the trap: when your baseline is already high, the scale stops meaning anything. What’s “severe” for most people has become our everyday normal. For many with chronic illnesses in a medical crisis, on a scale of 1 to 10, we are a 47!
When ‘Wait and See’ Becomes Dangerous
Over time, we start doing to ourselves what others have done to us: minimizing, rationalizing, waiting. With complex medical conditions, where multiple systems overlap or contradict each other, doctors often can’t pinpoint a single cause. The “wait and see” approach becomes the default. “Let’s try one thing and see how you react,” followed by another and another, until months, or even years, pass.
But chronic illness doesn’t work that way. Symptoms may be managed, but they rarely disappear. Some treatments help; others backfire. A few work for a while, then stop. Sometimes, treating one problem triggers another.
When that cycle repeats, both patient and doctor start doubting what they see. Physicians get frustrated with what they can’t fix and patients learn to keep quiet about what still hurts.
How the System Teaches Us to Doubt Ourselves
Many doctors, especially those unfamiliar with chronic pain conditions, grow impatient when the expected “miraculous recovery” doesn’t happen. Some take that frustration out on patients: labeling them “difficult,” limiting care, or implying they’re exaggerating.
We internalize that judgment. We stop calling, stop asking, stop trusting ourselves. We tell ourselves what we’ve heard and experienced so many times, “Maybe it’s not that bad.” We delay going in until it’s an emergency, or until someone else steps in and demands we seek help. Why do we wait? Because if we went to the hospital every time we were in extreme pain, we’d risk being seen as attention-seeking, or worse yet, as “drug-seeking.” Neither is true, but the fear of being dismissed keeps us silent.
Enduring Isn’t the Same as Being Numb
People with chronic illness are not desensitized to pain. We are simply practiced at functioning through it. It’s a survival mechanism, not a lack of sensation.
If an able-bodied person felt what we feel on an average day, they’d call an ambulance. We just keep going because we can’t spend our entire life rolling around on the floor, screaming and crying! Our mantra often becomes “what cannot be cured must be endured.” That endurance, though, blurs the line between “normal” and “crisis,” sometimes to the point that things become life-threatening or life-limiting before we realize what has happened.
The Aftermath of Self-Doubt
When things finally spiral, we look back in disbelief:“Why didn’t I call an ambulance? Why didn’t I go in sooner?” “Why didn’t I just that the hard stance and advocate for myself?”
But the real issue isn’t personal failure; it’s a healthcare culture that invalidates suffering until it’s life-threatening. That delay can mean intensive interventions, emergency surgeries, or critical care stays that could have been prevented.
A Call for Empathy and Change
If medical providers and indeed, our own friends and family, instead of labeling us complainers, oversensitive, or fixated, simply reassured us that we were right to seek help, it could change everything. Empathy is so powerful!
Encourage us to believe ourselves. Remind us that knowing our bodies is a strength, not an obstacle.
Unfortunately, our system rewards speed and limits access to medical providers and treatments. Many specialists can only see patients every six to eight weeks, even during severe flares. That “wait and see” approach leaves people suffering for months, sometimes years, before real help arrives. No one should have to live that long in pain.
Learning to Trust Ourselves Again
We’ve spent years downplaying our pain to make others comfortable. We’ve spent years being passed from one specialist to another, without resolution or even basic follow-up.
It’s easy enough to say, “You have to be your own advocate and demand help!” but it is harder to do when the system is stacked against you, and you risk having your medical care limited or even denied if you are seen as being too hyper-focused on your own illness or falsely accused of exaggerating your symptoms. But despite all of that, it’s time we learn to trust our bodies again, before they have to scream to be heard.
When you live with a chronic illness, cancer, or any life-changing medical condition, everyone suddenly believes they have the cure you and your entire medical team somehow overlooked. Experience and actual medical knowledge do not seem to matter. People will offer advice that ranges from overly simplistic to completely unrealistic, yet they are convinced it will solve everything.
It doesn’t matter if they have no medical background at all. It doesn’t matter if their idea is impractical, unscientific, or deeply bizarre. They are absolutely certain it will work, because their cousin’s neighbor’s dog walker once tried something similar and “felt better.”
When you’re faced with these awkward questions, statements, and magical cures, you can try responding gently and with patience. But often the person handing out unsolicited advice only becomes more insistent. This is why humor can become your best tool, especially when logic and politeness have left the building.
Most of my suggestions start with gentle or educational responses for those who genuinely mean well but simply don’t understand. But for the ones who are fully committed to their inaccurate, intrusive, or downright ridiculous assumptions? You may need to pull out the sassier replies, or even the spicy ones.
So, let’s take a look at some of the seriously awkward things friends, family, coworkers, and complete strangers feel wildly comfortable saying, and the comebacks you can use when your last nerve has officially clocked out.
“I’ve known other people with your illness, and they don’t act this way!”
“Medical conditions affect different people in different ways.”
“Funny. I did not realize my disability needed your approval to be valid.”
“Wow. Please send me the handbook titled How People With My Illness Are Supposed to Act. Mine must have gotten lost in the mail.”
“You’re too young to be this sick!”
“Medical conditions can happen at any age.”
“Sorry. My body didn’t check my birth certificate before falling apart.”
“Trust me. I tried to schedule this for later in life, but my body declined the request.”
“It can’t be that bad!”
“I assure you that I’m not making this up or exaggerating. It is this bad.”
“You’re welcome to borrow my symptoms for a day and get back to me.”
“Great news. My body is officially cured because you said so.”
“You’re right. I just do this for fun.”
“Amazing. You assessed my entire medical reality in under ten seconds. Should I call you doctor now?”
“Well, you don’t have to make such a big deal about it!”
“I’m not trying to make a big deal of it. It just affects me more than it may seem from the outside.”
“I’m doing my best. Sometimes even small things feel big when you’re dealing with chronic illness.”
“Oh, sorry. I forgot you were the expert on how much my life impacts me.”
“My mistake. Next time I’ll run my suffering through your approval filter.”
“Trust me. If I could make it a smaller deal, I would have done that years ago.”
“At least you’re not dead!”
“True. But ‘alive’ and ‘living well’ are not the same thing.”
“I am grateful to be alive. But that doesn’t erase everything I’m struggling with.”
“I hear what you’re trying to say, but it minimizes what chronic illness actually feels like.”
“Being alive isn’t the same as thriving. I’m working on the thriving part.”
“Well, yes… but survival isn’t exactly my full list of goals.”
“I’m glad to be alive. That doesn’t make this easy.”
“Sometimes being alive is the hard part.”
“Thanks… I’ll add ‘not dead’ to my gratitude journal right between ‘gravity exists’ and ‘the sky is still up there.’”
“I know you mean that kindly, but that’s a pretty low bar for quality of life.”
“Wow, you’re right — I am alive. Let me go bake a cake in celebration of this very low bar.”
“Great, so we’ve established I’m not dead. Now let’s aim for ‘not miserable’ next.”
“Well, yes, but if ‘not dead’ is the goalpost, I think we need to raise our standards a bit.”
“True. But sometimes it feels like the warranty on my body has definitely expired.”
“Well, thank you for that life-affirming insight. I’ll be sure to remember it next time I’m in agony.”
“Drugs are bad. Drug companies are bad. You shouldn’t need to take medication! You should only use natural healing methods.”
“Natural methods can definitely be helpful, but for my condition, I also need the medications my doctors prescribe to stay stable.”
“I appreciate that you care, but my illness requires treatment that natural methods alone can’t manage.”
“Wonderful. I will let my immune system know it is supposed to heal itself with positive vibes and herbal tea.”
“Great plan. I will just go tell my chronic illness to stop being chronic.”
“You must have done something to cause this!”
“I know it might seem that way, but many medical conditions happen without anyone causing them.”
“I understand why people wonder that, but my doctors have been clear that this isn’t something I caused.”
“I try not to blame myself. My condition developed on its own, like many chronic illnesses do.”
“It’s natural to look for reasons, but in reality a lot of health issues aren’t caused by anything someone did or didn’t do.”
“Yes. I caused it by existing. Wild, I know.”
“Right. I woke up one day and thought, ‘You know what would be fun? A lifelong medical condition that makes me miserable!’”
“If people only got sick when they ‘caused it,’ hospitals would be empty.”
“You don’t look disabled!”
“That’s the tricky part. Not all disabilities show on the outside, but they still impact daily life.”
“I understand why you’d think that. Invisible disabilities can be hard to recognize.”
“I know it’s not obvious, but I manage symptoms that aren’t visible to others.”
“Good thing disability is not a fashion trend.”
“Amazing. I did not realize disabilities had a specific look. Is there a catalog I missed?”
“Hold on. Let me go put on my official Disabled Uniform so you can feel more comfortable.”
“Let me find my official ‘Disability Club Card’ in my wallet so you will be convinced.”
“That is the thing about invisible disabilities. You can’t see them… but we still live with them.”
“If looking disabled were required, half the population would be disqualified.”
“Well, you don’t look like someone who says ridiculous things to strangers… but here we are.”
“Shocking, right? Turns out appearances can be deceiving.”
“Autoimmune disorders aren’t real. The doctors made that up so they can get your money.”
“I know it can sound confusing, but autoimmune conditions are very real. They’re well-documented in medical research and labs.”
“I know people have different beliefs about medicine, but autoimmune disorders are confirmed through bloodwork, biopsies, and imaging, not just opinions.”
“Fascinating. I did not realize medical science was supposed to check with you before discovering things.”
“Amazing. My immune system attacking my organs must have missed the memo that it is not real.”
“Wild. My labs, biopsies, and specialists all disagree, but sure, random stranger, tell me more about your conspiracy theory.”
“Oh, I understand. My grandma had arthritis, too!”
“I appreciate you trying to relate. My condition is a bit different and affects more than just my joints.”
“Arthritis can be really tough. My condition has some similarities, but it also involves other symptoms that make it more complex.”
“I understand what you mean. My illness goes beyond typical arthritis, but I know your grandma must have struggled, too.”
“What I have is different from traditional arthritis, but I know both can be painful.”
“Ah, yes. The classic Grandma Comparison. Truly the gold standard of medical expertise.”
“Your grandma had arthritis. I have a chronic autoimmune disease. That’s where the similarities end.’”
“Fantastic. Did she battle systemic inflammation, nerve pain, organ involvement, and fatigue so bad she could not sit upright? Unless she did, then we are not talking about the same thing.”
“If your grandma’s arthritis was anything like this, she deserves a medal. And so do I.”
“I have some arthritis in my knees, but I don’t act like it’s the end of the world!”
“That’s great that your symptoms are mild. Mine are more widespread and come with additional complications.”
“I’m happy your arthritis isn’t too severe. My condition behaves differently and affects my daily life in bigger ways.”
“I hear you. My situation is a bit more complex than typical arthritis, which is why it can feel overwhelming at times.”
“Congrats on your knees. Unfortunately, my condition affects a little more than two joints on rainy days.”
“That is great for you. My body, however, chose the deluxe autoimmune destruction package.”
“If mild knee arthritis were my only issue, I would be doing cartwheels. Well… metaphorically.”
“I am thrilled your pain is small enough to brag about. Some of us are fighting battles you cannot see.”
“There are people who have it so much worse than you!”
“I know others struggle too, but that doesn’t make my challenges disappear.”
“Suffering isn’t a competition. We all have our own battles.”
“I can care about others and still acknowledge that this is hard for me personally.”
“Other people suffering does not make my pain any less painful.
“I did not realize pain was a competition. Do I get a trophy for participating?”
“Their suffering is regrettable, but it does not cancel out mine.”
“You should be grateful it isn’t worse!”
“I do try to stay grateful. It just doesn’t take away the challenges I’m dealing with.”
“I understand what you mean. I can appreciate what I have and still struggle with what’s difficult.”
“Gratitude helps, but it doesn’t erase my symptoms or make them easier to manage.”
“I am grateful it’s not worse. I’m also honest about what I’m experiencing now.”
“Gratitude does not magically cure illness but thank you for the spiritual advice you did not need to give.”
“Being grateful it is not worse does not make living with this any easier.”
“If gratitude could fix my body, trust me, I would be healed, sparkling, and doing backflips.”
“Gratitude does not cancel pain.”
“You’d be just fine if you’d lose some weight and exercise more!”
“Staying active is definitely helpful, but my condition is medical and needs more than exercise to manage it.”
“I do what activity my body safely allows. Unfortunately, my illness isn’t something that improves just from exercise alone.”
“A healthy lifestyle is good for everyone, but my condition is more complex than that. I follow the plan my doctor recommends.”
“Weight and exercise aren’t the cause of my illness. It’s a diagnosed medical condition that needs real treatment.”
“I move as much as I safely can, but my symptoms still need medical care. Lifestyle changes can help, but they don’t cure this.”
“Amazing. My specialists must have missed that during the decade they spent in medical school. Good thing you solved it in one sentence.”
“Thank you for the medical advice that ignores my actual medical condition.”
“I exercise as much as my body allows. Sadly, it did not fix being chronically ill, but please keep pretending it would.”
“My illness is complex. Your explanation is not.”
“I appreciate the thought, but my condition cannot be fixed by weight loss or exercise. It is a medical issue, not a lifestyle choice.”
“Movement and a healthy weight is good for everyone, but unfortunately it doesn’t cure autoimmune or chronic conditions. I follow my doctor’s guidance for what my body can handle.”
“Actually, my illness is not caused by weight. It is a diagnosed medical condition that needs real treatment, not just lifestyle adjustments.”
“I do exercise as much as my body safely allows. Unfortunately, my condition is not something that improves just from being more active. Activity can actually make it worse at times.”
“There is always something wrong with you… You always have something to complain about.”
“I talk about it because I am living with it every day. I am not complaining. I am trying to cope and be honest about my reality.”
“It may seem that way, but that is because my symptoms never really stop. I am doing my best to manage them.”
“I know it can sound like a lot, but these issues are ongoing for me. I share them so people understand what I deal with, not because I like complaining.”
“I am not trying to burden anyone. My health challenges are constant, and sometimes talking about them is part of how I cope.”
“I know it seems like a lot. I wish it were not. This is just the reality of living with a chronic condition.”
“Oh, absolutely. I wake up every morning excited to overwhelm you with a full report of my medical misery.”
“Yes, it is my favorite hobby. Some people collect stamps. I collect diagnoses.”
“You’re right. I do love spending all my energy narrating the thrilling adventures of a body that doesn’t function.”
“Of course. I schedule new symptoms just so I have something exciting to share with you.”
“Absolutely. My chronic illness exists purely for your entertainment.”
“Yes, I enjoy describing my medical issues almost as much as I enjoy having them.”
“You just need to have more faith and God will heal you!”
“I appreciate that your faith is important to you. Mine helps me too, but my condition still requires medical treatment.”
“Chronic illness is not a measure of anyone’s faith. I am doing my best with both faith and medicine.”
“Having faith is important to me, but it does not make my medical condition disappear. I trust my doctors and my beliefs to work together.”
“My illness is not caused by a lack of faith.”
“Why do you need a handicapped parking place? Those are for people who really need them.”
“I use it because my doctor determined that I qualify for it and need it to be as active as I am able. I would not use the space if I did not genuinely need it.”
“The state only issues these placards to people who truly qualify, and I am one of them.”
“Handicapped parking is for people who need it. My doctor and the state agreed that I do. That is why I use it.”
“I qualify for it medically. Not all disabilities are visible, you know..”
“I need it for medical reasons that are not always obvious from the outside.”
“I don’t discuss my private medical conditions with people I do not know. I have a valid placard, and that is all anyone needs to know.”
“I do not owe anyone personal medical details. I have the placard because I legitimately need it. Have a great day!”
“I understand the curiosity, but I do not share my medical information with people I do not know. My doctor and the state have already confirmed my need for a placard.”
“My health is private. I have the parking permit for medical reasons that my doctor and the state have approved.”
“My doctor and the DMV already handled the part where someone decides whether I need it. That someone was not you.”
“You should tell the state they issued my placard incorrectly. I am sure they will put you in charge immediately.”
“If invisible disabilities came with neon signs, we would not be having this conversation.”
“Why do you need so many medications?”
“Each medication helps manage a different part of my condition. They work together to keep me stable.”
“I know it looks like a lot, but each one plays a role in keeping my symptoms under control.”
“My condition is complex, so it takes more than one medication to manage it well.”
Because my body likes variety. It malfunctions in several exciting ways each day.”
“If I could fix everything with one pill, I promise I would.”
“My illnesses are overachievers, so my medication list has to keep up.”
“Great question. Which part of my medical file would you like me to fax you first?”
“If you had my symptoms, you’d ask for a pill organizer the size of a suitcase.”
“Let’s just say my immune system likes to keep things interesting.”
“What do you mean you can’t climb the stairs? You’re just being lazy.”
“I am not being lazy. My body simply cannot manage stairs safely. That is a medical reality, not a choice.”
“My ability to use stairs is a medical issue, not a topic for debate. I know what my body can and cannot do.”
“I do not discuss my medical limitations with people I do not know. I avoid stairs because it is unsafe for me, not because of laziness.”
“I do not need to prove or justify my physical limitations to anyone. If I could climb stairs safely, I would.”
“My limitations are medical, not motivational. I follow what my body and my doctor tell me, not what strangers assume.”
“If I were lazy, I’d pick something easier than battling my own body every day.”
“Why are you so negative all the time?”
“I am doing my best. Living with chronic illness is hard, and some days are heavier than others.”
“I am not trying to be negative. I am just being honest about what my body puts me through.”
“It may sound negative to you, but it is simply my reality.”
“I talk about my health because I live with it every day. That is not negativity. That is honesty.”
“I do not get to take breaks from my health issues, so the topics I talk about reflect the life I live.”
“Oh absolutely. I wake up every morning excited to disappoint the positivity police.”
“If you experienced my symptoms for a week, you’d understand my tone perfectly.”
“I am reacting to real problems. My body is not exactly showering me with inspirational quotes right now.”
“You’re confusing negativity with honesty. I do not have the luxury of pretending everything is fine.”
“Why aren’t you cured yet?”
“Because my condition is chronic. It does not have a cure, at least not yet.”
“I wish it were that simple. My condition is chronic, and management is the goal. There is no cure for it…yet.”
“Because chronic illnesses do not magically go away.”
“Trust me. If there were a cure, I would have Amazon-primed it to my house yesterday.”
“I am still waiting for my body’s warranty department to call me back.”
“Apparently, my illness missed the memo about resolving itself quickly.”
“I would love a cure. Unfortunately, my condition responds to reality, not wishful thinking.”
“It must be nice to stay home and relax all day.”
“I know it might look that way from the outside, but most of my time at home is spent managing symptoms and trying to get through the day.”
“I understand why you’d think that, but resting at home is something my body needs, not something I choose for fun.”
“I do spend a lot of time at home, but it’s because my health requires it, not because it’s relaxing.”
“Yes, nothing says relaxation like pain, fatigue, and a stack of medical appointments.”
“If this is relaxing, I would hate to see what you consider stressful.”
“Sure is. I especially enjoy the part where my body forgets how to function.”
“Yes, I just love hibernating at home and missing out on all the fun!”
“It is nice. I’ve had so much time to perfect giving myself injections, and keeping up with all my medications and doctors’ appointments is just the icing on the cake.”
“Totally. My body falling apart in the comfort of my own home is the height of luxury.”
“Oh, it’s fabulous. I wake up every morning wondering which symptom will cancel my plans today. Very relaxing.”
“Yes, I am living the dream. Who needs hobbies and a life when you can lie on the couch all day in pain?”
“Only people in wheelchairs are supposed to use these toilets!”
“Accessible bathrooms are for anyone with a disability, not just wheelchair users.”
“The sign says ‘accessible,’ not ‘wheelchair only.’ I am using the one that is safest for me.”
“Good news. Accessible toilets are for more than one type of disability. Surprising, I know.”
“Wow. I had no idea you were the bathroom police. Do you have a badge?”
“Fascinating. The sign says ‘accessible,’ not whatever you personally imagine.”
“If only my disability were as obvious as your confidence in being wrong.”
“Have you tried meditating?”
“Meditation helps me manage stress, but it doesn’t treat the medical parts of my condition.”
“I do meditate sometimes. It’s helpful, but it can’t replace actual medical treatment.”
“I’ve tried it. It’s good for my mind, but it doesn’t change the physical symptoms.”
“Meditation is part of my self-care, but it isn’t a cure for my condition.”
“Yes. I meditated so hard my chronic illness packed its bags and left. Oh wait… no it didn’t.”
“Absolutely. I close my eyes, focus on breathing deeply, but somehow my immune system still keeps doing whatever it wants.”
“Yes, I’ve tried meditating. Unfortunately, my body never got enlightened enough to stop being sick.”
“Meditation is great. It just does not happen to cure inflammation, joint destruction, or organ issues.”
“Oh, totally. I sit quietly, breathe deeply, and my immune system still acts like a toddler with scissors and a tube of lipstick.”
“Have you tried functional medicine?”
“I’ve looked into it, but my condition needs medically proven treatments to stay stable.”
“Some people find it helpful, but my illness requires the care plan my specialists recommend.”
“I appreciate the suggestion. For my condition, though, functional medicine on its own isn’t enough.”
“I’ve explored different approaches. My doctors and I have found that evidence-based treatments work best for me.”
Yes, and shockingly, my chronic illness did not vanish after a $300 supplement panel.”
“I tried it. My disease was not impressed by celery juice and personality quizzes.”
“Amazing idea. Let me swap my specialists for someone who thinks inflammation is caused by my ‘chakra alignment.’”
“I looked into it. Turns out my illness needs actual medicine, not a wellness podcast.”
“Yes, I tried it. My autoimmune disease said, ‘Cute, but no.’”
“Have you tried yoga?”
“Yoga can be helpful for some things, but it doesn’t address the medical parts of my condition.”
“I’ve tried yoga before. It helps a little with stress, but it doesn’t change my underlying symptoms.”
“I appreciate the suggestion, but my body just can’t safely do all the movements, so I follow what my doctor recommends instead.”
“Yes, I did yoga. My joints applauded by dislocating themselves.”
“Great idea. Let me fix my autoimmune disease with glorified stretching.”
“I love yoga. It helps my stress. It does not, however, rewrite my medical diagnosis.”
“Sure. I did a downward dog, but my immune system kept doing a downward spiral.”
“Yes, I tried yoga. My chronic illness did not find it nearly as life-changing as Instagram promised.”
“Why don’t you try ivermectin?”
“I know people talk about it a lot, but my doctor has explained that it isn’t safe or effective for what I’m dealing with.”
“I appreciate the suggestion. My illness requires different medications that are designed for my diagnosis.”
“I’m following the treatment plan my medical team has created. Ivermectin isn’t part of what they consider safe or effective for me.”
“Sure, I’ll ask my doctor if I should take a horse dewormer for my autoimmune disease. I’m sure he’ll agree.”
“Right, because when my immune system malfunctions, obviously the solution is livestock medication.”
“Great idea. Let me just trot over to the barn and ask a horse what dosage they recommend.”
“Yes, I considered it. My chronic illness politely declined the offer to be dewormed.”
“If ivermectin fixed chronic illness, rheumatologists would be out of business, and the Tractor Supply store would be a hospital.”
“Amazing. You solved my complex medical condition with a farm supply product.”
“No thanks. I prefer medicine meant for humans.”
“You should try intermittent fasting!”
“Intermittent fasting can help some people, but it doesn’t address the medical issues behind my condition.”
“I appreciate the idea. My illness needs a treatment plan that’s a bit more specific than fasting alone.”
“I’ve looked into different approaches, but fasting isn’t something my body can safely handle with this condition.”
“Oh, perfect. I will just starve my chronic illness into behaving.”
“Great idea. Let me fix my medical condition with a diet trend from a TikTok wellness coach.”
“Sure. I’ll just tell my cells to wait until my eating window to malfunction.”
“If you just gave up all sugar, your cancer would go away.”
“I know people mean well when they suggest that, but cancer can’t be cured by eliminating sugar. My doctors are managing it with real medical treatment.”
“Diet can support my health, but it can’t cure cancer. I’m following the treatment plan my oncology team recommends.”
“I appreciate the suggestion. Unfortunately, cancer is much more complex than diet changes alone.”
“Eating well is helpful, but my doctors have explained that cutting sugar isn’t a cure for cancer
I’ve looked into many approaches, including dietary ones. Unfortunately, no diet can cure cancer. My doctors are managing it with real medical care.”
“If only it worked like that, my oncologist could retire and open a bakery.”
“I gave up sugar once. My cancer didn’t notice, but I got very cranky.”
“Imagine if curing cancer were as easy as skipping cupcakes. The medical world would be so relieved.”
“Amazing. My oncologist spent a decade in medical school when all she needed was a sugar-free cookbook.”
“Right, because cancer cells are notoriously afraid of fruit snacks.”
Medical trauma is more than just feeling nervous about doctor visits. It’s the kind of fear that settles deep in your body after being hurt, ignored, or dismissed by the very people you were supposed to trust. It’s sitting in the waiting room with your stomach in knots, remembering the times you were told your pain was “just stress,” or that your exhaustion was “just anxiety.” It’s hearing that everything would be fine if you lost a little weight, slept more, or just tried harder. And then being sent home with no real help for the symptoms that are still controlling your life.
If you are a woman, that fear often runs even deeper. It can come from having reproductive procedures done without any anesthesia or pain relief, like an IUD placement, an endometrial biopsy, a colposcopy, a cervical cauterization, or even certain childbirth interventions. You are told it will be quick, maybe a little uncomfortable, and then you are left gasping in pain, feeling betrayed and humiliated for reacting honestly.
Medical trauma teaches you that seeking help can sometimes make things worse. Your body remembers every time you were dismissed, and that memory shows up as anxiety, nausea, or panic every time you need to go back. It’s real. It’s painful. And it changes how you see yourself, your body, and the entire medical system.
You are not weak for feeling afraid. You are not dramatic for hesitating to make another appointment. What happened to you mattered, and it left an imprint. Healing from medical trauma takes time, safety, and people who truly listen. You deserve care that honors your pain instead of dismissing it, and you deserve to feel safe in your own body again.
If this resonates with you, you’re not alone. Many of us carry this quiet fear, and talking about it is the first step toward reclaiming our trust and our voice. If you can relate to this article, please leave a comment below.
Nobody’s first choice. Not anyone’s favorite person. People may say I matter, but those are just words and occasional forays. There’s always someone else they’d pick first.
It’s a quiet kind of pain, knowing that no matter how much love I give, I’m the one left waiting. Wanting. Hoping. Waiting for the truth I already know will finally be spoken, pretending it doesn’t matter, while my silence screams what my words cannot.
I’ve learned that it’s better not to try, because trying means failing again. It aches to know, no one fears losing me.
If I vanished, it would be a while before anyone noticed. Maybe a passing thought months later, “I wonder what ever happened to her…” Or maybe not even that.
I keep hoping someone might choose me first, but after a lifetime of waiting, and trying, and aching, I know better.
I’ve always been the vague backup plan, the easy choice. When I refuse to settle for that role, love disappears entirely, if it was ever truly there at all. Was it ever really there?
Deep down, I know the answer. Each morning, I wake because the alarm rings, not because of hope or anticipation. To hope feels dangerous now. If I do nothing, I ache with loneliness; if I reach out, I ache with rejection. Either way, I bleed.
How can I have lived so long and never been chosen? Never asked out? Never danced? Never heard someone say, “I just needed to hear your voice,” and they were talking to me?
Who lives like this, knowing they weren’t even second-best.
I’m kind. Helpful. Compassionate. Strong, resilient and resourceful. I find joy in small places. I live my convictions. I spend my life trying to make a difference, quietly, relentlessly, and still, I am never what anyone wants.
I’m nobody’s first choice: I’m not even anyone’s act of desperation.
I’m just the space people pass through on their way to someone else.
Having to make medical decisions on a frequent basis is exhausting, not just physically but mentally and emotionally. Even after your doctor explains your options and you have done your own research, the uncertainty does not go away. You still lie awake wondering, Will this treatment help me or harm me? Will it trigger a flare or cause damage I cannot undo? What is the cost of not treating my condition? Will it cause me to become non-functional? Is the treatment worse than the disease?
When you have multiple conditions, the anxiety multiplies. You start wondering if the medication for one illness will interact with the treatment for another, or if managing one condition will cause the other to spiral. You sit across from one specialist who is an expert in one disease but does not really understand another major diagnosis you have. The label “medically complex” often makes doctors hesitant to treat you with the same confidence they might have if you only had one condition.
Too often, there is little or no research on how multiple conditions interact, and specialists hesitate to offer a full range of treatment options because of this. They cannot answer your questions because they simply do not know. You are left trying to piece together advice from different doctors who rarely talk to each other, hoping their recommendations do not cancel each other out or make things worse. When lab results show a new issue, neither you nor your doctors can be certain which treatment caused it, or whether it is an entirely new problem.
Often, you have to decide which condition is most pressing to treat. Can you live with the challenging symptoms of one condition in order to focus on a more life-threatening one? When a condition is clearly life-threatening, it is easier to know it must be treated with priority. But sometimes, the choice is not so clear. You may find yourself having to decide whether to treat the condition that causes life-altering pain or the one that is quietly damaging one or more internal organs. Which is more important for your quality of life right now? Which could cause the most harm long-term if you delay?
These are nearly impossible questions to answer. There is often no research to guide you and multiple doctors may give conflicting advice, each shaped by their own specialty and perspective. You are left to make decisions without the data or information needed to make an informed choice, and the resulting anxiety—both while making the decision and long after it is made—can be overwhelming. Did you make the best decision? Should you have chosen differently? You will never have certainty.
If you have a rare condition, one that only a handful of specialists in the country truly understand, it adds another layer of fear. You may have to travel long distances or wait months for an appointment, knowing that even a small misstep could have serious consequences. Sometimes you realize you know more about your own illness than most of the people treating you.
Medications and treatment regimens for rare diseases are often incredibly expensive, simply because a drug made to treat only 20,000 people costs more to produce and has fewer researchers working on it than one created for a widespread condition. A rare disease has only a small “market,” while something that affects millions of people is far more profitable for drug and research companies. That leaves those of us who are medically complex with few choices, and what options exist are often priced far beyond our reach.
Every decision feels like a risk. You could get better. You could get worse. The interaction of multiple treatments could make you far worse, and neither you nor your doctor may be able to identify what caused your new symptoms. It can take months of trial and error, changing one drug or supplement at a time, just to get back to where you started. Or you might stay the same, stuck in a body that feels unpredictable and fragile.
You learn to ask hard questions and to accept that sometimes doing your best with what you know is all that can be done. Over time, you learn to live in the space between uncertainty and endurance, gathering what strength you can for the choices that must be made today. You notice the small moments when your body cooperates, and you practice grace when it does not. Living with medical complexity means accepting that clarity may never come, yet still moving forward, balancing hope with realism, and fear with faith that you will find a way through.
I was raised to believe that I should never let my disability or chronic illnesses “stop me.” For years, I lived by that mindset, pushing myself harder than everyone else, overcompensating to prove I could keep up, and constantly trying to show that I was “enough.” On the outside, it looked like determination and resilience. Inside, it left me worn down, ashamed, and convinced that slowing down or resting meant failure.
The truth is, chronic conditions can and do stop us sometimes. That is not weakness, it is reality. Pretending otherwise does not make anyone stronger. It only piles guilt on top of the burden we already carry. My worth has never depended on how much pain I can endure with a smile, or how many hours I can work just to prove I belong.
I am learning that it is okay to acknowledge limits. It is okay to rest. It is okay not to be “superhuman.” My value has never been tied to how far I can push past pain, and neither has anyone else’s. So please, stop repeating phrases like “I never give in to my disability” or “I never let my chronic illness slow me down.” Sometimes chronic conditions are debilitating. They do stop us, and that is not a personal failure.
What truly matters is not how much we can push through, but how we learn to live honestly with the bodies we have. True strength is honoring our limits with dignity, grace, and self-compassion.
True strength is not pushing past pain. True strength is honoring your limits.
Introduction: Disabilities and chronic illnesses aren’t black and white. Like the world itself, they come in many shades of gray, and sometimes, contradictions exist side by side. Life isn’t divided neatly into ‘healthy’ and ‘unwell.’ There are countless ways of being, with shifting energy and overlapping truths. We can live in the space of ‘both/and.’
Those who silently struggle carry a thousand untold stories. They do not speak of the shadows that cling to them, or the heaviness that steals their light.
They become expert at silence, at suffering quietly behind locked doors, hiding everything in small, hollow words that reveal nothing.
They imagine strength, rising toward growth, toward creation, toward purpose, instead of being consumed by exhaustion and pain.
Each time they whisper, “I’m fine,“ their mask draws across the storm inside.
Unrelenting weight divides a soul in two.
One side reaches for meaning, for independence, for the dignity of work and purpose.
The other side knows the truth: that pain will rise, fatigue will return, and each attempt will crumble to dust.
It is the cruelest battle, between the boundless soul that longs to rise and the weary body that pulls it back to earth.
After cancer treatment ends, friends and family often expect us to be ‘better’ within a week. They look for us to be ‘back to normal,’ returning to work, handling family responsibilities, and resuming an active life within weeks or months. But the truth is very different. Many of us did survive the cancer, but our bodies carry the hidden damage of the treatments that saved us. Kidney damage, stents, GI issues, incontinence, nerve damage, neuropathy, crippling weakness, and relentless fatigue are just a few of the lasting effects. What others see as the end of the battle is, for us, the beginning of living with its consequences. We survived the war, but our bodies and our ‘normal’ functioning became the collateral damage. We are alive, but we will never be the same.
Remember that health is not guaranteed. Chronic illness or disability can strike anyone: young or old, rich or poor, careful or careless. You can eat perfectly, exercise faithfully, stay positive, and do everything “right,” and it still might happen to you.
No amount of money, no circle of family or friends, no dedication to your job or your dreams can prevent it if it comes. Chronic illness and disability arrive uninvited, often without warning, and always without permission. They are not punishments, not failures, and are not consequences of not trying hard enough. They are simply realities of life that any person may face.
So, appreciate the ordinary things your health allows you to do: working, moving freely, making plans, and being independent. Those things feel permanent until the day they aren’t. If illness or disability takes hold, it can alter every part of your life, no matter how much you’ve worked for or built.
Gratitude for your health doesn’t mean living in fear; it simply means recognizing that what you have today is not promised tomorrow. Live fully, with compassion for those who are traveling a more difficult road, and with awareness that you could be standing in their place at any moment.
Sincerely,
Chronically Ill, Disabled People Who Never Thought They’d Be in This Position
I often wonder why people, most of whom have never even heard of my illness, let alone lived with it, believe they’ve discovered a ‘cure’ that somehow escaped the knowledge of doctors and researchers who have dedicated their entire careers to this condition. Yet, I’m expected not only to be grateful for these unsolicited and often dangerous suggestions but also to gamble with my health and well-being on the basis of hearsay and unproven treatments.
Why would I take such a risk? Why should anyone? And why would someone without medical expertise in this specific field think it appropriate to try to persuade me otherwise?
I have to ask, why would someone even suggest this to me, much less expect me to try it? Do they not consider the possible outcome if their ‘miracle cure’ goes wrong?
Is my health so trivial to them that they can toss out reckless advice without thought for the consequences? Or is it simply that my honesty about the depth of my illness makes them so uncomfortable that they feel compelled to fill the silence with quick fixes, regardless of how harmful those fixes might be?
At times, it feels less like concern and more like dismissal; as though they care more about easing their own discomfort than about truly supporting me. And if that is the case, then I cannot help but wonder: do they care about me at all?
I also find myself wondering, do they believe I’m not really trying to get better? Do they truly think there’s some easy “cure” I’ve simply overlooked, as though I haven’t spent years seeking help, researching treatments, and enduring therapies?
Sometimes, I even question whether they assume I don’t actually want to get well, as if living with a serious illness is somehow a choice. That thought crosses my mind more than I care to admit, and it stings; not because it’s true, but because it reveals how little they understand the reality of living with a chronic condition.
I have doctors and medical professionals who have tried, and who continue to try, every option available. They haven’t given up, and neither have I. But part of this journey means facing reality: that not every illness has an easy fix, and that sometimes the best we can do is manage, adapt, and keep searching for ways to live as fully as possible.
I’ve endured the fallout of failed treatments: side effects strong enough to drop an elephant, one new medical issue piling onto another, dangerous drug interactions, worsening symptoms, and an ever-growing list of physical and mental limitations, all in the name of being open-minded and willing to try anything that might offer relief. And yet, despite all that I’ve risked and suffered in pursuit of wellness, there are still people who imply that I’m not ‘doing enough’ or that I’ve somehow overlooked an easy fix. Their casual suggestions dismiss not only my life-experience but also the years of effort, sacrifice, and resilience it has taken just to keep going.
The truth is, my persistence is proof of my strength. I have faced setbacks that could have broken me, yet I continue to show up, to adapt, and to live as fully as I can within the limits my body places on me. My willingness to keep trying; despite pain, disappointment, and uncertainty, shows that I haven’t given up on myself or on life. If anything, it proves that resilience is not about finding a cure, but about finding the courage to carry on in the face of what cannot be cured.
Like the old English proverb says, “That which cannot be cured must be endured.” I have endured. I continue to endure. Not because I’ve given up, but because true strength lies in living fully, even when there is no cure.
When people say, “I never saw the signs,” about someone who is struggling, it often isn’t true. The signs are usually there — quiet, subtle, easy to miss — not only by friends and family, but sometimes even by the person living with chronic illness.
Living with a long-term illness is more than managing symptoms. It’s coping with losses: loss of health, career, independence, purpose, or even identity. Those losses often come with fatigue, grief, frustration, and emotional pain. Recognizing when you’re struggling is not weakness; it’s the first step toward getting support.
Hiding the Struggle
Many of us deny how bad things are, because we don’t want to burden others or admit (even to ourselves) how overwhelmed we feel.
We may avoid conversations that leave us vulnerable.
We might fear venting in case it pushes friends away.
Negative thoughts creep in: “I deserve this. I’m being punished. I’ve failed. This is my fault.” These beliefs can drive us into deeper isolation.
The Isolation Cycle
When we feel optimistic, we make plans, but when pain or fatigue that force us to cancel, guilt and disappointment push us further into withdrawal.
Isolation fuels depression, which fuels more isolation. It becomes a toxic cycle that feels impossible to break.
Even enjoyable hobbies fade away, not because we don’t want them, but because our bodies won’t cooperate. This deepens the sense of helplessness and grief.
Everyday Signs of Struggle
Self-care slips: irregular meals, skipped showers, neglected laundry, unkempt appearance. These aren’t just a “lack of motivation.” They’re signs of emotional and physical overload.
Sleep disruption: oversleeping, staying awake all night, or restless exhaustion from pain or worry.
Irritability: lashing out disproportionately is often the language of distress, not anger.
Cognitive fog: losing your train of thought, abandoning books or TV shows because you can’t follow them, forgetting simple tasks. Your energy is going into survival mode, leaving little energy left for focus.
Talking only about illness: when symptoms dominate every conversation, it’s often because life feels consumed by medical trauma, leaving little else to share.
The State of Your Space
Our homes often mirror our internal state. Signs of struggle may include:
Clutter piling up in unusual places.
Unopened mail, unpaid bills, unanswered texts.
A heavy or dark atmosphere, poor lighting, and constant background noise to drown out inner thoughts.
This doesn’t always mean laziness or disorganization. It may simply reflect emotional turmoil, physical limits, or sheer exhaustion.
Recognizing the Signs in Yourself
If you notice these patterns in your own life, it doesn’t mean you’re failing. It means you’re human, living with something unimaginably hard. Chronic illness is not just a physical condition; it’s an ongoing emotional and mental challenge.
When you recognize the signs in yourself, try not to judge them. Instead, see them as signals: I need help. I need connection. I need compassion from others and from myself.
Introduction: Psoriatic disease, short bowel syndrome, myotonic dystrophy, a congenital and progressive disability that limits my mobility, severe damage from radiation treatments, more damage from metastatic cancer therapies, and ankylosing spondylitis — most of the time, I manage. I find ways to cope. But then this wave comes, and I’m struck down by sadness, jealousy, and a crushing sense of loss. I know these flashes of anger are not unwarranted, yet they often leave me drowning in feelings of failure. Sometimes, I turn this anger and sense of failure inward, resenting my weakness, simply because I’m not able to cope as well as I think I should. And so, this poem rises from the quiet, intractable ache of being human.
When Silence Trembles
by Jan Mariet
Let me be sad. Let me be angry. Let me feel jealous and cheated and swallowed up by all the ugly emotions that come before acceptance or that come crashing back on a bad day.
Sometimes, I just can’t make peace that my life is chained to chronic pain, crushing fatigue, and GI horrors most people couldn’t imagine in their worst dreams.
Most days, I hold it together. I deal with it. I even accept it.
But then there are days when it slams into me like a tsunami, leaving me terrified, furious, heartbroken, and drowning in confusion.
On those days, nothing I do can quiet the anguish because it roars too loudly.
Chronic illness shakes me to the marrow, twisting my cries into silent, unheard whimpers.
I want to live fully, with purpose, independence, and stability, but the pain, fatigue, and flares of my disability and chronic illness pull me back every time, no matter how hard I try.
I keep trying anyway, knowing full well it will end in defeat, because the alternative is just giving in to the pain and emptiness. The hardest part is the difference between the life I image, and the only one my body can actually endure.
At times, I accept my fate. There are times I rage against it with such determination and strength that I could rebuild our world into the paradise it was always meant to be. But like a moth drawn to the intense flame, it always leads to the most predictable end – being engulfed, so temporarily, in the warm of the flame, and then abandoning the heat and light to the coldest, darkest end, laying crushed and helpless near the burned ashes in the pale morning glow. And inside, realizing that none of it made the least bit of difference.
Today is my 38th straight day of being alone, having nothing in particular to do, no particular contact with anyone else, and stretching mundane tasks across endless days just to have something, anything, to do. It is the 38th day of being crushed by the isolation of being totally and utterly useless and unreliable.
I’m not even particularly sad about this. I’m not anxious, or unhappy, or even overwhelmed. I’m just here, existing without any meaningful purpose, occasionally starting projects I know my physical body will never be able to complete, and feeling completely engulfed by the unending tedium that fills each endless day.
I make no decision more important than do I go to the grocery store today to pick up three items, or wait and go in two days and pick up six items. I have no plans more important than do I go to the drug store and walk around, or sit around at home staring a wall or out the window.? Do I stay at home, or walk a short distance even though it means pushing past pain that I’m so good at hiding that no one could scarcely guess how intense it is?
Sad, happy, defeated, empty – the words mean nothing except a dull monotony of minutes ticking by… Hours ticking by… Days ticking by… A life that is ticking by…
Although I am starved for conversation, I rarely call or contact anyone. The only thing I have to share is the monotony of endless empty minutes, or disjointed memories of a life from so long ago, and once-interesting stories that lost their luster a dozen tellings ago.
After years of medical treatments, hospitalizations, recoveries, re-hospitilizations, attempts at returning to a purposeful life followed by inevitable failure after destructive failure, what do I have worthy of being said, much less shared? I bore myself, and hear my own pain in my forced positive conversations.
I am caught in an endless cycle of adversity, isolation, partial recovery, resiliance, rebuilding, re-emerging, strength, pushing above and beyond my puny physical abilities, and crushing defeat. Do I wallow in the agony and isolation of defeat, or try again? I always try again, and the cycle repeats, endlessly. At this point, even I recognize the futility of unsubstantiated hope. I am that moth draw to the flame that will ultimately burn my very soul, with the only alternative the coldness of laying, spent and lifeless, in the cold, damp morning sand.
I have no inspiration left. I go through the motions, through the expected rhythms of daily life in complete exile, sometimes pushing myself in meaningless tasks, sometimes allowing myself to just give in the monoteny of sleep and scrolling, and always, always, being filled with the incredibly emptiness of near-complete isolation.
In many ways, I wish I was sad, or dejected, or depressed, because those things eventually end. Instead, I am completely engulfed in waves of numbing futility. If I care, I will be disappointed. If I try, after only the tiniest bit of success, I will be overwhelmingly crushed by inevitable failure. If I even dare to hope, I won’t just be disappointed, but will be overcome by desolate failure. I haven’t given up. I’ve just realized the futility of trying to be something I have no ability to be.
Today is yet another day, of empty, useless minutes ticking by. I think this numbness I feel is my decision that it is better to feel nothing at all than to continue in this endless cycle. Is a choice between giving in or repeating a painful, self-defeating, endless cycle really any choice at all?
During my battle with cancer, I met so many brave women fighting the same fight.
People often said things like, “You’ve got this!” or “You’re a fighter — God has plans for you.” But what does that imply about the women who didn’t survive? That they lacked strength? Faith? Determination?
Let me be clear: they did not. They most certainly did not.
They were fierce, faithful, and full of life. Many were mothers, daughters, wives, friends — deeply loved and needed. They fought with everything they had. And still, they died.
Meanwhile, I lived. No children. No spouse. No parents depending on me. And I often wonder — why me? Their loss left gaping holes in the world. Mine wouldn’t have.
I’ve been told, “God has a purpose for you.” But I’m not so high-and-mighty as to believe my survival means I mattered more. If anything, I mattered less.
I don’t understand why some live and others don’t. I doubt I’ll ever understand. But this I do know: those women didn’t lose their lives because they were weak or unworthy. They were extraordinary.
I try to believe the universe unfolds as it should — even when it breaks my heart and leaves my soul utterly shaken. Sometimes, it is easier to believe than at other times.
Because of extensive radiation damage, I lost most of my small intestine and several sections of my colon. As a result, eating has become one of the hardest parts of daily life. My body can no longer handle most foods, and I have to prepare almost everything I eat myself. I follow a highly restricted diet—not by choice, but by necessity. It’s not easy, but it’s my reality, and most of the time, I manage it with grace.
Being alive is worth every challenge. It’s worth the complications, the cravings, the limitations. Over time, the longing for foods I can’t have has mostly faded. But not entirely.
There are still moments when the smell of crispy fried chicken or a hot slice of thin-crust pizza takes me back. About a month ago, I gave in and had a single piece of fried chicken. I paid for it with nearly three weeks of feeling miserably ill. I miss cinnamon rolls. I miss pudding and cheesecake. I miss bacon, tomato sauce, creamy sauces, and yes, even something as simple as a Triscuit. I miss sandwiches with deli meat and soft sub rolls. I miss when food tasted the way I remember it—before radiation from my metastatic cancer changed my mouth, tongue, and throat, robbing me of both saliva and flavor.
My diet now is functional. Scrambled eggs. English muffins. Carefully cooked lean meat. I rely on processed carbs because I can’t digest whole grains, seeds, or even rice. Croissants, biscuits, and coffee cake? Off-limits. Beans, legumes, raw fruits and veggies are also on the no-go list. The few veggies I can eat have to be cooked until they are mush, and there really isn’t much of a point because all the vitamins and fiber are gone at that point.
I no longer eat for pleasure—I eat to survive. Most of the time, I’m at peace with that. But I’m also human. Every once in a while, I chase a memory—of a flavor, a texture, a feeling of fullness and satisfaction. The foods never taste the way I remember. And they always leave me in pain. Still, I miss the warmth of sloppy joes, the comfort of spaghetti with meat sauce, the heartiness of pot pies, and oh—how I miss chocolate and ice cream.
I do what I must. But until you’ve lost the simple joy of eating something you love and feeling good afterward, it’s hard to understand just how much that meant. What we used to call “comfort food” doesn’t bring comfort anymore. I miss that part of life—not just the food itself, but the memories, the moments, and the feeling of being full in the best possible way.
It seems like a very trivial thing to miss but consider how much of our lives we spend buying groceries, planning meals, prepping for meals, cooking, baking, and of course, eating. Going out to eat or sharing a meal with a friend is something that only happens a handful of time in year now. The warmth of a good meal with good friends and family is such a distant memory. It makes me smile the way good memories do, but I try really hard not to think about it too much.
Once you’ve had cancer, it’s like living in the shadow of an unseen threat—always waiting for the other shoe to drop. Is it really gone? Will it return? (Or in my case, when will it strike again?) How much more can my body endure?
What many don’t realize is that the battle doesn’t end when treatment does. After aggressive chemo and radiation, recovery isn’t just a matter of weeks or months—it can take years, and sometimes, you never truly get back to where you started. Cancer treatment doesn’t just target the disease; it leaves behind a trail of collateral damage.
For me, that meant losing my small intestine, four sections of my colon, and my gallbladder, all casualties of pelvic radiation. And when the cancer returned—this time in my neck, at the base of my tongue, and in my throat—I endured chemo and 67 grueling radiation sessions. The cost? My salivary glands, many of my teeth, and nerve damage that left the left side of my face forever changed.
But here’s the thing about cancer: I survived it. And that, above all else, is worth everything.
As we recover from a variety of illnesses, or while during treatment, we can often find ourselves spending an inordinate amount of time on bed rest. Here are some fun things to choose from to pass the time while on bed rest or resting at home.
I loved making these bird and hanging them from the branches of an indoor house plant. They are fun and easy. The eyes and features are supposed to be self-stick, but they don't tend to come off easily, so I just bought a bottle of felt glue to make it easier.
The holes are precut, and these woodland creatures are fun for all ages. You will want to buy a bottle of felt glue to aid with sticking on eyes and felt-on-felt features. Lots of fun for all!
This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.
My RBC, hemoglobin and hematacrit have been very low for over 8 months now. Having had chemo done twice in the past 2 ½ years easily explains that, but it is very hard to live any kind of life when these three items are so low.
It leaves you tired, exhausted, sick-to-your-stomach, unable to keep food down, and just feeling like you need to sleep 24/7. If you even sit down in a stiff-back chair, you’ll fall asleep. It can also make your blood pressure very low. One day, mine was 74/43! (and yes, I immediately went to the hospital for that.) It isn’t a great quality of life when you spend 20+ hours a day sleeping!
My RBC is 3.04 which is very low. In range is 3.8-5.10.
My hemoglobin is 8.2 which is dangerously low. In range is 11.7-15.5.
My hematacrit is also low. It is 27.4. In range is 35-45.
I have severe anemia, but not iron-deficient anemia that we typically think of. I have no iron deficiency.
I often get pernicous anemia (a lack of vitamins D and B-12,) because I can’t absorb them due to having short bowel syndrome, but I get injections of these daily through my TPN.
My anemia is pure and simple a lack of red blood cells. This often happens after intensive chemo, but mine is not resolving. There is a good chance my bone marrow isn’t producing enough red blood cells, and the ones that are being produced are the wrong shape and size.
My kidney function is less than half what it was 2 weeks ago (which is very scary.)
My Creatinine is very high (much higher than usual) which shows that something is taxing my liver.
There is a medication that can help me. I’d need to get an injection at a hematology center every two weeks, until my blood levels come up. I’ve been trying to get into one and get set up for months. I’ve been there twice already, but they didn’t feel it was “that bad” and wanted to “wait and see.”
They made my next appointment for the end of October! (which is two months from now!) I did a lot of praying and came to the conclusion that I needed to put on my “pleasantly persistent” persona.
I sent a note to them saying I’m not sure I’ll still be here in 2 months for that next appointment, that I’ve already been in the ER on three different occasions and was hospitalized for 15 days all in the past month, that I am weak and shaky, I’m in the bed 18-22 hours per day, and this isn’t much of a life. I reiterated that I need help NOW, not two months from now. I ended it by simply saying “Please help me!”
I think it hit a chord with them, because the very next day, they called and worked me in, did all the labs they needed to do to prove to the insurance company that I did need this insanely expensive treatment, and I’m now set up for my first four treatments!
“Pleasant persistence” is a very powerful attribute.
UPDATE: After my first Pro Crit treatment, I started to feel better. My labs increased a bit. I felt less tired and less fatigued. Now, three months later, I feel like a new person! My RBC, Hemoglobin, and Hematocrit are still low, but not “scary” low anymore.
Being your own advocate (or being the squeaky wheel) is essential in our healthcare system. I’ve always found that the key is to stay pleasant (pleasantly persistent). Yelling, shouting, and threatening don’t tend to get you anywhere (and besides, those attributes are just not in my nature) but if you stay pleasant, yet insistent, I’ve found you can effectively advocate for yourself and get what you need.
Today was a really tough day for me physically. I was weak, dizzy, nauseous all day, and my balance was really off. And I had a blood lab, a doctor’s appointment, and then my cleaning ladies came (and we all know you have to straighten up a bit before they come.) I was shaking so hard and my vision was blurry. I wasn’t sure I could make it through the day, but I was determined to push myself to try.
But here is the other side of things. I had a doctor’s appt at the time my home health nurse usually comes to my house. She rescheduled my home health to 7am this morning, so I got it done early, and it was done and over with way before my doctor’s appt. What a blessing!
My ride (a volunteer from the American Cancer Society’s Road to Recovery Program) showed up right on time to pick me up. He’s driven for me once before, and he is just a delightful gentleman (who has Multiple Myeloma, a type of blood cancer. He’s had it for 19 years, and does stem cell therapy to keep on keeping on.) He drives as a way of “giving back” to the cancer community. He is a great driver. He likes to have conversations while we drive to the appt. He waits in the waiting room the whole time (reading a book on his phone) and then all the way back we have nice conversations. What a wonderful blessing! We have the nicest chats, and very little of it is about cancer. It is so nice to talk about anything other than cancer!
My cleaning ladies came early today, right after I got home from my doctor’s appt. (Their boss texted and asked me if that would be okay.) I felt so sick, and all I wanted to do when I got home was crawl into bed and rest. Those wonderful cleaning ladies immediate stripped the bed and put on fresh sheets, so I could lay down in my own bed and rest! Wasn’t that thoughtful of them? I told them they could vacuum around the bed and I wouldn’t even notice, and I certainly was true to my word. I’m amazed by their kindness. I hadn’t even asked, but they just realized I wasn’t my usual upbeat self and that I didn’t feel good. What a blessing that was! Little things mean so much!
When I woke up from resting, I felt a bit better. Then we had a huge rainstorm, and I just love the sounds and sights of storms. It takes me back to when I was a small child. When there was thunder and lightning, my dad would call me over to stand next to him by the huge picture window in the front of the house. He’d always say, “Come on, Janice. Let’s watch all the pretty lights in the sky.” Because of him, I’ve never been afraid of thunderstorms. And to this day, I find myself standing at the window, looking for all the pretty lights. What a blessing that was. Somehow, my dad knew just how to take the “scary” part away, and just see the beauty in loud crashing thunder and crackling lightning.
I guess my point is, I could have grumbled all day about things that didn’t go my way, but truth be told, there were more blessings today than I could even imagine until I wrote them down and counted them.
Count your blessings, name them all one by one. Count your many blessings, see what God has done!
Once you get home, there are many items that can help you with your recovery, such as adjustable beds, assistive devices, bidets, bedside commodes, and specialized pillows and wedges.
This bedside commode is inexpensive yet sturdy, and able to accommodate a person up to 350 lbs. During recovery, using a bedside commode is so much safer than taking risky walks in the dark to the bathroom.
I use this pillow because I have ankylosing spondylitis in my cervical spine. This special pillow cradles your neck in comfort and support. It is perfect for back sleepers and side sleepers. It has a cover that easily zips off to be washed.
This no-touch trash can is the perfect size for the kitchen or living area. You can easily throw things away without touching the can, and it self-closes when you are finished. It also has a odor filter to help eliminate odors. I especially like it because it keeps my dog out of the trash!
This upright rollator is wonderful for helping with mobility and balance, while keeping you in an upright position. Regular walkers and rollators lead to the user becoming hunched-over, but an upright rollator keeps your back nice and straight, and keeps you with good posture. I've had mine since 2020 and it is still working great!
These compact emesis bags were the most essential thing I needed (and used) during radiation and chemo! I always kept one in my bag, in my car, and much of the time, in my hand!
I can't tell you how many times this kept me from throwing up in an Uber or friend's car while traveling to or from the cancer center, or what a relief it was to have one of these on my bedside table for those times you need one and there is no time to get up and run to the bathroom! Trust me, these are essential while going through chemo and radiation.
A sitz bath is so helpful in reducing the pain from hemorrhoids and anal itchiness and sensitivity. This one can collapse for smaller storage. While the description doesn't say it fits an American oval toilet seat, it does. The squeeze bulb can be used to push water to just the right place. A soak in a warm sitz bath can provide so much relief.
Add a small amount of these Sitz Bath Salts for Hemorrhoids to warm water in your sitz bath and soak for about 10 minutes. You can't imagine how much pain it will relieve. This is the best brand I've found so far.
Exam gloves are essential when using anal/rectal suppositories or for applying ointments. They are especially necessary if you are dealing with any cream that is made of zinc oxide (such as Calmoseptine or Destin) because otherwise, it is really difficult to wash the cream off of your fingers (it resists water and moisture.) Gloves just make it so much easier.
This self-opening and closing bathroom trash can opens by motion, and closes tightly afterwards. It is a small size, and it keeps unsightly trash (such as wipes, used gloves, used incontinence pads, etc.) out of sight. I got one of these for each bathroom specifically to make sure my dog didn't get into the trash and causes a mess.
With Crohn's or IBD, while recovering from hip replacement surgeries, and during medical treatment for cancer, a bidet is an essential piece of equipment. Easy to add to your toilet, and easy to use, a bidet cleans your bottom with a stream of water and helps reduce toilet paper irritation. It also reduces the need for a twisting motion (to wipe.)
If you've never used a bidet, you don't know what you are missing. Thisis a basic model that uses room temperature water, but they also come in deluxe models that use heated water, and ones that have two streams -- one for your bottom and one for women during their menstrual cycle. Once you have a bidet, you'll never understand how you did without one!
(This bidgt is easy to install. I didn't need a plumber, my retired neighbor came over and installed it in less than 30 minutes.)
A wedge can help you get more comfortable in bed while recovering from a variety of surgeries. It can also help with GI issues such as GERD. This memory foam wedge is extremely comfortable.
This King size split bed allows you and your partner to sleep together, while also being able to adjust each side of the bed to meet your individual needs. Unlike most advertised on Amazon, this is both a split base and split mattresses that exactly fit the frame.
This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.
This variety of bed wedges can help you stay comfortable while resting, reading in bed, sitting up to watch TV or use a laptop, to raise your legs higher, when needed, etc. These can be used on a regular bed, on your sofa, or many other types of furniture. The quality memory foam can reduce body pain, improve blood circulation, help with low blood pressure, and relieve acid reflux. The removable zipper covers are easy to remove and launder.
This commode seat or shower seat has a remote control to help those who can't lift themselves. This device is very helpful for caregivers, and keeps them from putting out their backs.
This easy to assemble blanket lift (also called a blanket bridge) keeps the weight of the blanket or comforter off of your feet and legs. It keeps your legs and feet from getting trapped under the weight of comforter, or twisted-up in the sheets and blankets.
I have pretty severe damage to my hands (psoriatic arthritis and neuropathy) and I use this cleaver to cut meat easily. It is incredible. I can cut a 2-3 inch thick piece of beef without a struggle, and the knife cutter sharpens the blade each time you use it.
This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.
I used to be a teacher. Before that, I was a city supervisor. Here and there, I’ve been a writer.
Now, I am a nothing. I sit in a house, day-in and day-out without anyone to talk to.
I live for Mondays, when the home nurse comes to take my blood work and change my PICC Line dressing because it is 20 minutes of conversation I don’t typically get.
My hobbies are gone. My job and volunteer work are gone. I’m completely unreliable because I never know if I’ll have the energy or ability to do anything.
I’m so hungry sometimes while food spoils in the fridge because I don’t have the strength or the energy to actually cook it.
Anything I try to make my life better fails just like me. A complete and total failure sitting alone day after day.
Be patient, they tell me Your body needs time to heal as months and months pass and very little changes.
The years pass and very little changes. And all I can say is, “I used to be . . .”
Often, cervical cancer metastasizes in the mouth, tongue, or throat. Here are some products that can help when going through head and neck radiation and aggressive chemo. I hope you can find some products that will make your life easier during this trying time.
If you are struggling with dry mouth, these disks adhere to your gums and help your mouth to stay moist all night long! They are fabulous for those who have chronic dry mouth due to Psoriatic Arthritis, or those whose salivary glands have stopped functioning properly during head and neck cancer radiation.
DripDrop electrolyte powder can really help you stay hydrated during medical issues and recoveries. Both my cancer and GI nutritionists recommended it, and it is available in a variety of flavors. Fruit Punch is my favorite, with Grape as a close second.
When chronic diarrhea strikes, can dehydration or electrolyte imbalances be far behind? (Pun intended.) DripDrop has fabulous flavors that you mix with water to increase your hydration. This electrolyte powder comes in a variety of great flavors!
Ensure Max Protein drinks are great when you are having trouble eating and need both calories and protein. They come in several flavors, have only 1 gram of sugar, and 30 grams of protein. I always keep a few in the fridge for those days I just don't feel like eating, so I don't get shaky or weak.
If you aren't afraid of being sassy, this "F*ck Cancer" bracelet has its hidden message in Morse Code. And unless you tell the, no one will guess what the Morse Code message says.
These compact emesis bags were the most essential thing I needed (and used) during radiation and chemo! I always kept one in my bag, in my car, and much of the time, in my hand!
I can't tell you how many times this kept me from throwing up in an Uber or friend's car while traveling to or from the cancer center, or what a relief it was to have one of these on my bedside table for those times you need one and there is no time to get up and run to the bathroom! Trust me, these are essential while going through chemo and radiation.
This self-opening and closing bathroom trash can opens by motion, and closes tightly afterwards. It is a small size, and it keeps unsightly trash (such as wipes, used gloves, used incontinence pads, etc.) out of sight. I got one of these for each bathroom specifically to make sure my dog didn't get into the trash and causes a mess.
Whether your hair is thinning from chemo, or has completely fallen out, these skullie caps are easy to put on and very comfortable on your puffy, sore scalp.
When having radiation in the mouth or throat, products with alcohol are too harsh. This mouth rinse helps keep your mouth clean and healthy without that alcohol burn.
I use this pillow because I have ankylosing spondylitis in my cervical spine. This special pillow cradles your neck in comfort and support. It is perfect for back sleepers and side sleepers. It has a cover that easily zips off to be washed.
If you have chronic dry mouth, this kit can help keep your mouth moist. I love the mouth rinse and the spray (which is fabulous when you are in the hospital, or to carry around in your purse.) I don't care much for the gel, but that is just my personal preference.
This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.
This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.
When you have a chronic illness or are living with multiple life-changing conditions, it impacts every aspect of your life. Progressive disabilities are thieves who steal our inclusion in daily life, as well. Things you once did and enjoyed slowly and relentlessly are stolen from you, until even with adaptation they merely bring you frustration and irritation instead of the joy they once contained.
Your friends and former colleagues drift away because they don’t know what to say or what to do. Phone calls, video calls, and even social media posts and messages grow more and more difficult because it is hard for people who care about you to see you in pain, especially when there is nothing that can be done about it. Communication between you and former dear friends becomes infrequent, shorter in duration, further apart in frequency, and often ceases altogether.
It becomes harder and harder for you to maintain friendships and relationships as your world becomes smaller, and the only events or experiences you have to share are medical or pain-related ones. While your friends discuss the activities in their lives, you really have nothing to add unless you discuss your illness, and that gets tiresome to all involved.
While they are happily telling you about a concert they attended last week, you are all too aware that you haven’t been to a concert in several years. As they tell you about all the goings-on at work, you are reminded that you are no longer able to work, and very well may never be able to work again. As you listen to them tell you about a recent vacation, it saddens you to recall that you are no longer able to enjoy such holidays. If they talk about a wonderful restaurant they recently visited, you regretfully remember that you are unable to eat those types of food anymore, that you can’t have any alcoholic drinks anymore, and that even sweet treats are something from which you must abstain. It doesn’t make for an enjoyable conversation for either person.
When you are dealing with a variety of issues (such as sun sensitivity, food restrictions, urinary incontinence, fecal incontinence, overwhelming fatigue, blurry vision that prevents you from driving, extreme nausea, intractable pain, taking strong medications that leave you drowsy and unable to logically converse, etc.) it can make social events all but impossible.
The unexpected nature of many chronic illnesses can cause you to frequently have to cancel plans, even though you really want to participate. When you frequently cancel, or when it takes a herculean effort to include you, people stop asking you, and your social life can become non-existent.
You may have to cancel because you are extremely unwell that day, because of an unplanned hospitalization or medical treatment, or an unexpected reaction to a new medication. Sometimes, you have to cancel for reasons you really don’t want to share – like the lack of a handicapped restroom where you are going, a long walk from the parking lot to the event site, or the realization that the event is held in a historic building and you’d have to climb stairs, which you can’t do.
When the world is not as accessible as it needs to be, when illness takes your strength and energy, and chronic fatigue and malaise leave your thoughts muddled and confused, it is difficult to feel included and hard to be involved. The barriers to inclusion sometimes seem insurmountable and leave you with a quality of life that you wouldn’t wish on your worst enemy. How many times can you be the scorekeeper in the kickball game of life?
I tend to be a person who thinks of what I can do rather than what I can’t do. I tend to look for the joy in situations rather than let myself be unhappy. Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do. I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do. Then I have to stop simply to spare myself from the magnitude of it.
First, there are the things I have never been able to do. These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these.
Second, there are the things I once could do, but no longer can. This list is so much longer. These leave a sorrowful place in my heart. I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job. It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent. The list is so long that I’ve only been able to touch upon the substantiality of it.
You learn to lie about how you are doing. People ask how you are doing, but they don’t really want to know unless it is mostly good news. I can’t blame them for that – it is human nature.
I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.” Or “Well, I can’t complain. Well, I could, but who wants to hear that?” with a well-timed laugh. It ends the query and allows me to quickly change the subject. How many times can you tell a friend that you are not doing well, or that you are getting worse? “How are you?” isn’t really a question in our society. It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.
We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc. At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us. Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet.
For others of us, what makes us feel like an outsider cannot be fixed or changed. People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.
There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.” It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world. In my mind, I despise this poem. While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too. He still doesn’t have any shoes!
I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them. Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition.
When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential. I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.
For most of us, others barely notice what bothers us. But for a few of us, our issues are hard to ignore. Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns. We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk. We look away and then get away as quickly (and as unnoticeably) as we can. (And later, we feel very bad about having done that.)
While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider. Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase.
Many times, our loved ones react in strange ways to our progressive medical and physical changes. Some blame us as if we caused it to happen. Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy.
Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit. And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.) Often, it can be as if our loved one blames us if their efforts don’t lead to a cure. This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much.
While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness. Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy. For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion. We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.
Where were you when you learned that your cancer had metastasized?
I was home, alone, listening to a voice on the other end of a phone wondering if I was really hearing what I thought I heard?
Where were you while I was having it biopsied?
Bravely doing it without sedation just because I’m a tough.
Where are you, as I’m losing my voice and possibly my mind, while I’m researching like mad hoping that it doesn’t mean what I know it means.
When the biopsy reports came in who held my hand as the doctor said it is even more advanced than I thought?
My hand was, of course, empty.
You’ve never seen a stiffer upper lip. The Brits would be proud of me. but I’m not a Brit.
I listened to the words “Stage 4” and “inoperable” I almost, in my mind, decided no more treatment until he told me, treatment won’t cure. Treatment won’t even prolong, but it can make your passing more comfortable. They call it “comfort chemo” and I cannot imagine two more contradictory words.
I’ve already started to lose my voice. It is whispy, and raspy, and sometimes I say words, only to realize that no sound came out.
And as if that wasn’t enough to bear today, the biopsies from my throat, my stomach, my intestines my entire GI system, came back. Words like immune caused chronic gastritis, precancerous polyps and the beginnings of stomach cancer stand out.
No wonder I can’t eat much.
And through all of this, I’ve stood strong Until today, when I broke-down because of stupid things three times — because the van driver asked me a question, I answered but no words came out of my mouth, and she yelled at me.
Stage 4. Inoperable. Comfort chemo. Hospice, rehoming my precious pup — for those I stood brave and didn’t break. Refused to break. But a van driver I’ll probably never see again in my life yelled at me unfairly, and I crumbled.
Sometimes I think, oh how the mighty have fallen, but I am not one of the mighty. In my heart I’ve always been just a small person, wanting to help others and live a small life.
I want to talk, and chat about happy things, pleasant memories, hopes and dreams, and our favorite flavor of ice cream, play board games, watch the sunset in comfy chairs with our favorite beverages with a group of friends who feel as at home as if they were family.
I just want Sunday night family phone calls and visits that seem to come out of nowhere. But you can’t manufacture these. You either have them or you don’t. And I don’t.
My parents had these things, and I so happily lived vicariously through theirs. I want one last Thanksgiving with a crowded table, Mom’s Christmas china, people by the TV cheering on their favorite teams or scowling at an ump’s bad call.
But my heart knows, it will never be again.
I am brave. I am strong. I know both of these things, you don’t need to tell me. But my heart is not made of stone.
My life right now is so empty. For whatever reason, my life never entwined with anyone else. There were no dates, or boyfriends, or girls’ nights out or even a friend I could say, hey, let’s go shopping or two a movie, or to a craft fair. It all seemed to be an art I never learned.
And while I know the time and day for these things is long gone it doesn’t keep me from craving it all the more.
A week at a peaceful Michigan lake in an A-frame, a walk in the woods, or playing croquet (of the most vicious variety) in a flat square grass. Somehow, even things like that have been beyond my grasp for as long as I can remember.
I never wished for riches, or power, or fame. I just wanted Thanksgiving crowded with family I knew and loved, making all of our favorite foods while some stayed up talking into the small hours of the morning, while others toddle off to bed in the early hours with a to do list that guides each early rise, and fills their lives with purpose.
Now, I fight the sleep at night, afraid that I may not wake up at all., and knowing that all too soon that will be true.
I was born with a disability that progressed as I grew and aged. My loss of mobility was much greater than was ever expected. Nineteen surgical reconstructions helped slow it down a bit, but nothing could stop the eventual loss of my mobility.
I had a career I loved. My disability’s progression ended my ability to do that job (even with accommodations, which were not an available option back when this happened.) I had a master’s degree in my field, 12 years of successful experience, and had worked my way from an entry-level position to a top management position in a relatively short time.
And just like that, it was gone. I couldn’t physically do it anymore.
Losing your mobility is difficult. Losing your job at the same time (which also meant losing my health insurance, at a time when a disabled person couldn’t get health insurance outside of a workplace) was devastating.
That was over 25 years ago. I took some classes, got certified in another field that I could physically do, and began a new career. Again, it was a job I loved. And then, after 20 years in my new career, once again, a physical issue made me unable to continue at that job, or any job.
Inflammatory arthritis and ankylosing spondylitis left me almost bedridden and in so much pain. Just when I thought it couldn’t get worse, I was diagnosed with invasive cancer.
Throughout all of this, adaptability was my best ally. A bit lost without the ability to work anymore, I took the chance to write and publish a book, which had been a dream of mine since I was a teen.
When your circumstances alter your life, you really only have two options — let it destroy you or embrace adaptability.
Sometimes, the treatment for cancer can cause short-term and long-term issues that you never expected. Here are some items that can help a person through cancer surgery, radiation, chemo, or brachytherapy.
There are also many items that can help friends and family of cancer patients to both help them through the process, and to let them know that they are loved and cared for.
Ensure Max Protein drinks are great when you are having trouble eating and need both calories and protein. They come in several flavors, have only 1 gram of sugar, and 30 grams of protein. I always keep a few in the fridge for those days I just don't feel like eating, so I don't get shaky or weak.
DripDrop electrolyte powder can really help you stay hydrated during medical issues and recoveries. Both my cancer and GI nutritionists recommended it, and it is available in a variety of flavors. Fruit Punch is my favorite, with Grape as a close second.
When chronic diarrhea strikes, can dehydration or electrolyte imbalances be far behind? (Pun intended.) DripDrop has fabulous flavors that you mix with water to increase your hydration. This electrolyte powder comes in a variety of great flavors!
These compact emesis bags were the most essential thing I needed (and used) during radiation and chemo! I always kept one in my bag, in my car, and much of the time, in my hand!
I can't tell you how many times this kept me from throwing up in an Uber or friend's car while traveling to or from the cancer center, or what a relief it was to have one of these on my bedside table for those times you need one and there is no time to get up and run to the bathroom! Trust me, these are essential while going through chemo and radiation.
A sitz bath is so helpful in reducing the pain from hemorrhoids and anal itchiness and sensitivity. This one can collapse for smaller storage. While the description doesn't say it fits an American oval toilet seat, it does. The squeeze bulb can be used to push water to just the right place. A soak in a warm sitz bath can provide so much relief.
Add a small amount of these Sitz Bath Salts for Hemorrhoids to warm water in your sitz bath and soak for about 10 minutes. You can't imagine how much pain it will relieve. This is the best brand I've found so far.
Exam gloves are essential when using anal/rectal suppositories or for applying ointments. They are especially necessary if you are dealing with any cream that is made of zinc oxide (such as Calmoseptine or Destin) because otherwise, it is really difficult to wash the cream off of your fingers (it resists water and moisture.) Gloves just make it so much easier.
If you aren't afraid of being sassy, this "F*ck Cancer" bracelet has its hidden message in Morse Code. And unless you tell the, no one will guess what the Morse Code message says.
If you end up with neuropathy in your feet or have pelvic lymph nodes removed, it can lead to lymphedema. These soft, non-binding socks are soft, comfortable, and have non-binding elastic to avoid causing lymphedemic swelling.
(The Kindle Version is $0.00 if you have Kindle Unlimited, or $3.95 if you don't.) Here's a link to my first book, Embracing Life's Limitations: Letting Go of Who You Were Supposed to Be. It is a story of growing up with bilateral hip dysplasia, living with psoriatic arthritis and ankylosing spondylitis, and talks about my first cancer journey, months in hospice, and the incredible doctor who tried a very risky surgery that ultimately saved my life. It's about learning to adapt to, and even embrace, our many limitations.
These soft, unscented wipes are so much easier on your bum than toilet paper, especially if you are dealing with anal pain or hemorrhoids. (Don't forget, these are not flushable. Put them in a covered trash can and not in the toilet!)
This self-opening and closing bathroom trash can opens by motion, and closes tightly afterwards. It is a small size, and it keeps unsightly trash (such as wipes, used gloves, used incontinence pads, etc.) out of sight. I got one of these for each bathroom specifically to make sure my dog didn't get into the trash and causes a mess.
If you are recovering from abdominal surgery, these women's panties can provide the support you need during the healing process. They are supportive, comfortable, and the fabric breathes well. The higher waist helps prevent having underwear elastic directly pressing on the radical hysterectomy incisions. These certainly are more comfortable than the abdominal binder you may be given at the hospital (and they happy to be pretty, as well.)
A wedge can help you get more comfortable in bed while recovering from a variety of surgeries. It can also help with GI issues such as GERD. This memory foam wedge is extremely comfortable.
This delicate soap for intimate areas can be helpful on radiation damaged or sensitive skin. (Do not use internally!) I found it to be so much better than regular shower soap. While it is made for women, it can also be helpful for men who are having radiation on their prostates. (Note: This is a scented product so if you are sensitive to scented products, you may wish to try something else.)
If you end up with a hernia because of Crohn's or IBD, or if you've had one surgically repaired but still want to have some extra support, I think you'll like this hernia belt. It gives great support and allows you to be more active without making things worse. You can just use the belt portion to provide support after an open radical hysterectomy, as well.
Whether your hair is thinning from chemo, or has completely fallen out, these skullie caps are easy to put on and very comfortable on your puffy, sore scalp.
Calmoseptine Ointment temporarily relieves discomfort and itching around the anus. It provides a multiple purpose moisture barrier. It has a numbing agent to reduce the pain from hemorrhoids, or the itchiness caused by excessive diarrhea. This is my "go to" product for anal itch, burning, and pain.
Desitin with the purple label can be so helpful with the irritation and skin breakage that can happen during and after radiation. It contains zinc-oxide (so you have to wash it completely off prior to any radiation treatments) but it can help skin in the anal areas to stay dry so it can heal. (Itis always best to wear exam gloves to apply this because it can be hard to rinse off bare hands._
Do you love to swim but fear having a fecal accident while in the pool? These adult swim reusable pants can be worn under your swimsuit, or in many cases, instead of swimsuit bottoms. They fit snuggly around the waist and legs to prevent leaking. While they aren't the most attractive thing in the world, they can give you the chance to return to swimming without fear of fecal accidents.
With Crohn's or IBD, while recovering from hip replacement surgeries, and during medical treatment for cancer, a bidet is an essential piece of equipment. Easy to add to your toilet, and easy to use, a bidet cleans your bottom with a stream of water and helps reduce toilet paper irritation. It also reduces the need for a twisting motion (to wipe.)
If you've never used a bidet, you don't know what you are missing. Thisis a basic model that uses room temperature water, but they also come in deluxe models that use heated water, and ones that have two streams -- one for your bottom and one for women during their menstrual cycle. Once you have a bidet, you'll never understand how you did without one!
(This bidgt is easy to install. I didn't need a plumber, my retired neighbor came over and installed it in less than 30 minutes.)
Unfortunately, after abdominal or pelvic radiation, you often end up with dark, noticeable radiation burns. Bio Oil helps heal and lighten those burns and often helps the discoloration to fade away. (If you are still receiving radiation, make sure to wash of Bio Oil and pat the skin dry before have a radiation treatment. )
These pads are wonderful when cervical cancer treatment leaves you with urinary incontinence. They are extra long, very absorbent, and delivered directly to your home discretely.
This sofa or bed cup holder is amazing! It can hold cups of coffee, cans or glasses, as well as other items. I personally keep my glasses in one section for safekeeping, along with my Roku remote. When I adjust my adjustable bed, this cup holder stays in place. It is so helpful whether on a bed, a couch, or a table top.
This Kindle is lightweight and easy to hold. It also allows you to change the font size so you can read without glasses when your eyes get tired, or you can have it read aloud. You can purchase and download your favorite books from Amazon.
After you finish cancer treatment, you have imaging often at the six month and one year mark, and then several more times during the first five years to make sure the cancer hasn’t reappeared.
They don’t say you are “cured” from cancer. They rarely say you are in remission. What is normally observed is that you are NED.
NED stands for “no evidence of disease.” It means they no longer see any signs of your cancer. Those of us who have gone through this always know, in the back of our minds, that even if one tiny, microscopic spec of cancer still remains, it can and probably will, be back. This is called a reoccurrence if it returns to the same or neighboring area, or if it travels using your lymphatic system, it tends to metastasize elsewhere in your body, such as your lymph nodes, or your lungs.
No matter how hopeful and how positive you are, if you’ve been in a cancer support group for any length of time, you will know someone who was NED, who seemed to beat cancer, who suddenly finds it roaring its ugly head, and within days or weeks, it overwhelms their body, and they slip away.
A single, solitary thought goes through cancer survivors’ heads — “if I’m still alive . . . ” We all know, even if we never express it, how tentative life is, and how quickly the disease we “survived” can snatch us away.
It took me 6 months after my first NED to stop thinking “If I’m still alive . . .” when I thought about the future — as in, “I’d like to go to the craft festival, if I’m still alive then.” Cancer changes you in ways others who have not experienced it will never understand.
You get treatment, you sort of recover from the treatment, you get NED, and everything seems fine — until it’s not. I lost both of my parents to cancer, and in both cases, things seemed fine, until it metastasized and dealt its final blow.
No matter how much you know it can return, when your life returns to normal and all is well, it is still a shock when it returns. You think you have beaten a great enemy, that you have won fierce battle, and slain the enemy, only to have it reappear and let you know exactly how puny we humans really are — that a microscopic cell could snatch our victory — how fragile the human condition is.
I have no illusions. Cancer is rarely “gone.” It lies sleeping just outside our view until with a lightning strike it jolts you out of your comfortable rest.
I just try to enjoy each day, live that day as it happens, and not worry too much about the future. I like to stay busy in the present since it’s the only thing we can really be sure of.
There is a poem I read for the first time in college, called Musee des Beaux Arts by W.H. Auden. I found the words haunting back then, and after battling and surviving cancer, they ring even more true.
Musée des Beaux Arts
by W.H. Auden
December 1938
About suffering they were never wrong,
The Old Masters: how well they understood
Its human position; how it takes place
While someone else is eating or opening a window or just walking dully along
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.
In Brueghel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water; and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky
Had somewhere to get to and sailed calmly on.
A few close people will feel our loss, at least for a while. Certainly, Daedalus mourned his son, Icarus as he fell to his death. To Daedalus, the loss of his son, Icarus, was a great tragedy. But the rest of world, as portrayed in Breughel’s famous painting Icarus, pays little notice to the boy sinking below the water to his death.
In a similar way, whether we win or lose our battle with cancer, the world goes on just as it always does. We never know if we are soaring too close to the sun, melting the wax that holds us together, and plunging us into the icy waters of the unknown.
Heredity is a strange thing. It can give your child shimmering blue eyes, dark, long lashes, or a large, Roman nose. You can end up with a slender build, a large bust, a short stature, dimples, or male-pattern baldness.
Heredity can lead to some wonderful happenstances – like cousins who look like twins, or coppery red hair generation after generation. Heredity can also lead to some unpleasant issues, like rheumatoid arthritis, kidney disease, or congenital deafness.
It almost seems cruel that within a family tree, some have tendencies toward being healthy and robust, while others find themselves on the losing side of the genetic crapshoot we call life. Even among siblings and cousins, the genetic roulette wheel treats some to great fortune while leaving other family members in a completely different situation.
While I am one of those people who finds themselves with a variety of conditions that tend to be caused by the negative part of genetics, there are several traits I quite knowingly obtained from certain family members and ancestors, and those are fortitude, perseverance, stick-with-it-ness, sheer determination, and adaptability.
It is also true that there are other things I quite knowingly gleaned from my family tree. Some I have directly inherited, while others are believed to have a strong genetic component.
Congenital hip dysplasia (Developmental hip dysplasia)
Psoriatic arthritis
Ankylosing Spondylitis
Degenerative Disk Disease
Crohn’s Disease
Inflammatory Bowel Disease
Chronic Kidney Disease
Scoliosis
Spinal Stenosis
Sjogren’s Disease
Myotonic Dystrophy, Type 2
We have no control over having an inherited condition. It is as randomly assigned as eye color or foot size. However, what you make of these conditions is within your purview. No one denies that having chronic conditions which cause you pain and disability can be overwhelming. Personally, I think that finding those small moments of joy, that beautiful sunset, that walk with a friend, or a new bloom in your garden, are the small victories that make life worth living. It doesn’t reduce or relieve the pain, it doesn’t improve your mobility, cure your anxiety, or fix your medical issues, but for that brief moment in time, joy can be the best medicine there is.
Life does not mete out pain, illness, or disability fairly. Sometimes — most of the time, actually — we just have to make the best of what life has given us and find joy where we can.
I was just sitting here, and I noticed the date on the calendar — 3/29/2023. It was two years (and 2 days) ago that I underwent a procedure that confirmed I had cancer. It was, technically, the beginning of my cancer journey.
I had been sure of it several weeks earlier, in early February, when I unexpectedly started bleeding vaginally, almost 12 years after menopause. The first words out of my mouth were “Oh my God, I have cancer!” I don’t know what brought those words out of my mouth, but I knew, without a doubt, I had cancer.
I only bled for one day. Imagine if I had just ignored it. Imagine if I had just “waited to see.” Imagine if I hadn’t followed up, even though my insurance company made it almost impossible for me to follow up.
I knew this was serious, and I was tenacious in following up. I think a person less used to having to advocate for her medical rights would have given up simply because of all the ridiculous hoops the insurance company made me jump through.
Because of my altered anatomy (my pelvis has been reconstructed, plated, bone grafted, and pinned over the years) the only way to do a pelvic exam (at this time of my life) to confirm the cancer was to do it surgically, under full anesthesia, in an OR with a special platform for people like me – with musculoskeletal deviations.
I wanted to get an appointment with a well-known oncologist gynecologist, but the insurance company wouldn’t allow it. They said I had to go to my PCP and have a pelvic exam done there. I explained to them it wasn’t medically or physically possible, but they would not relent. So I waited a few weeks to get in to see my PCP, all the while knowing cancer was pulsing through my body.
When I went to my PCP, I explained the issue of my pelvic reconstructions and the difficulty of doing a pelvic exam. She looked at me (and I do mean “looked”) and said, ”I can’t possibly do a pelvic exam on you. I don’t have the right equipment, and I don’t have experience with your disability”. I said, “I know, but the insurance insisted I come here.”
She documented that I needed a gynecologist with experience with people with musculoskeletal deviations. Then, of course, the insurance insisted I go to a standard gynecologist. They couldn’t get me in for 6 weeks. I personally called all over town until I found a gynecologist who knew how to do a pelvic exam on me, had hospital privileges at the only local hospital that had the special platform, and he worked me in quickly, and my PCP helped me appeal the insurance company’s decision.
This male gynecologist had just recently gone into practice. He knew a lot about gynecology. He knew very little about cancer. When he did the exam, he knew what he was seeing was very abnormal, that it was some kind of cancer, and that it was invasive. He called me into his office when the pathology report came back. He told me I had cancer, and he gave me a referral to the oncologist gynecologist I had wanted to see in the first place.
I went to see her. Of course, she couldn’t do a pelvic exam in her office either, so she relied on the other gynecologist’s report. When she read it, she said, “This doesn’t seem too bad. It looks like you just have endometrial thickening.” I stopped her and said, “I don’t know what that report says, but I saw the look on that doctor’s face when he told me I had cancer.”
My oncologist gynecologist was a very smart woman, and she said “The best way for me to figure out what’s going in is to just call him directly.” And she did, right there in the exam room. He explained to her, in detail, what he had seen (which wasn’t clear in his report at all.) When she hung up, she said, okay we need to get a PET scan on you, and then we’ll plan the next step. I was relieved.
Guess what? The insurance company wouldn’t approve the PET scan. They said I had to have an MRI. I tried explaining to them that an MRI would be of no use, since I have 9 ½ pounds of surgical metal in my pelvis. They still insisted. (Obviously, the metal streaks, blurs, and physically blocking a huge section of my reproductive organs would make it unusable.)
I asked my oncologist gynecologist to appeal the insurance’s decision, but she explained to me that they could tie up the appeal for up to 4 weeks, and that was not what we wanted to happen. She said to go ahead and do the MRI, and when it came back as unusable, she could get the PET scan approved very quickly. She said it would be quicker this way, so I had the MRI and exposed myself to unnecessary contrast, which is incredibly hard on my kidneys (I also have CKD.)
Of course, all the metal in my pelvis and well as bone in strange places, made the MRI unusable and caused an issue we didn’t realize yet. The MRI said my tumor was 1.4 cm. The PET scan said it was 2.4 cm. Based on this information, my oncologist gynecologist recommended a radical hysterectomy and removal of my pelvic lymph nodes for testing.
I agreed. This sounded reasonable. A small 2.4 cm tumor is very operable. If only we had known how wrong we were!
My bladder was prolapsed, so the surgeon (my oncologist gynecologist) removed it from its attachments, and moved it over, out of the way, and pinned it into place. When she removed my uterus, she was shocked to see that tumor was tightly packed and over 4 cms, which technically means it was “inoperable.” She had great difficulty even finding my pelvic lymph nodes (they were located so much deeper in the pelvis was typical, and 5 of the 11 she removed were not even functional. (They remove the lymph nodes to send them to pathology to see if they have cancer spreading through your lymphatic system.)
I was in the hospital for 10 days, and my surgeon came to visit me every day. Then I was sent to a nursing home for 4 weeks (I signed myself out against medical advice after two weeks, because the care was so poor.) It was during my 2nd week in the nursing home I was “called in” to my surgeon’s office. The nursing home arranged a handivan to transport me. This is when my oncologist gynecologist told me that the tumor was more than twice the size that the imaging had indicated and that I was going to need very aggressive chemo and radiation, followed by brachytherapy.
I did ask her why she didn’t tell me any of this when she was visiting me in the hospital. She simply said, “I wasn’t sure you could take it then. You were so weak, and you were completely alone.” I think she was probably right. She said I needed about another 4 weeks to heal from the radical hysterectomy (it was an open incision, so recovery was fairly long)
So, then I started the second part of my journey – 45 sessions of radiation, 6 weeks of chemo, and two weeks of brachytherapy (which is internal radiation and was incredibly difficult because of my anatomy.)
All of this started — my cancer journey — two years and two days ago. I never thought that two years later, I’d still be recovering from the damage done by radiation and chemo.
Who knew two years and two days ago that I’d lose eleven lymph nodes, my ovaries, my fallopian tubes, my uterus, 2/3s of my vagina, 3 feet of my small intestine, several bowel loops, my cecum, my appendix, part of my ascending colon, and finally, my gallbladder? Who knew my sigmoid colon would be damaged to the point it could not be repaired, that my rectum would be damaged, and that I’d suffer an anal fissure and internal hemorrhoids?. Or that I’d contract a serious recurrent colon infection, constant B12, and vitamin D deficiencies, frequent malnutrition due to my remaining intestine’s inability to absorb vitamins and nutrients, and bile acid malabsorption?
Lastly, who knew I would end up with dietary limitations which meant eating only low fiber, low fat, low residue, bland foods to almost the exclusion of almost all vegetables, fruit, all whole grains, seeds, nuts, beans, and dairy? But here I am – alive, and well, and waking up to sunshine almost every day! Who knew?
You may already know my story, but for those who don’t, I’ll recap the basics and tell you the latest developments.
Ten months ago, I had been on hospice for over 5 ½ months. I had been in and out of the hospital for over 12 weeks. I survived very invasive cancer, only to have my intestines destroyed by the radiation that saved my life. Radiation enteritis (caused by my cancer radiation treatments) had destroyed a large portion of my small intestine, my sigmoid colon, and my body had reacted by developing Crohn’s disease (an autoimmune disease) in several of my bowel loops.
I couldn’t keep food down, I had near-constant diarrhea and would simultaneously vomit bile because I had bowel obstruction after bowel obstruction where the intestine was burned and the tissue scarred and twisted. They put me on hospice and said my condition was “incompatible with life.”
I made my end-of-life plans, wrote my will and had it notarized and witnessed, double-checked my beneficiaries, planned my funeral and cremation (and paid for it), and even wrote my own obituary. I posted my DNR order and registered it with the local hospitals. I assigned a medical power of attorney and a financial power of attorney and chose my executor. I put my affairs in order and even found a retired couple who agreed to adopt my elderly dog when I passed so I wouldn’t worry about what would happen to her once I was gone. (They also cared for her every time I was in the hospital or when I was too weak from radiation and chemo.)
Long story, short, after 12 weeks in and out of the hospital with basically nothing passing through my bowels, I was so weak, and I literally had only days left. The surgeon the hospital had assigned to me said it was hopeless – that I was far too weak and too deconditioned to survive any attempt at surgery.
He even stopped coming to see me. I didn’t see him once during the last 8 days, no matter how many times I asked for him. I knew the end was near. I could barely lift my head off the pillow. Physical therapy didn’t even bother to come anymore, because I was too weak and deconditioned to even stand on my own. I had a PICC line put in, and since I hadn’t been able to keep any food down for months, they hooked me up to TPN, which is when they pump nutrients and electrolytes directly into your bloodstream.
There was the added complication that a colostomy bag was out of the question. You see, I have severe arthritis and enthesitis in my hands and wrists, and it wouldn’t be possible for me to open or empty a colostomy bag. If I had one, it would have meant spending the rest of my life in a nursing home or care facility. I was in my fifties, had been fiercely independent all my life, and honestly, I would rather die than spend the rest of my life with a colostomy bag I couldn’t care for and living in the never-world of a care facility decades before my time.
Somehow, as weak as I was, I found the strength to realize I had no confidence in the doctor the hospital had assigned to me. He had long since given up on me. There was no compassion from him. There was no hope.
I felt my body shutting down, but I just wasn’t willing to let go yet. I was very confused by it all. I didn’t know if I should pray to die or try to live. One second, I’d hold on to life with everything inside me, and the next, I was ready to let go. I was overwhelmed by it all. As weak as I was, I still had just a sliver of “fight” left in me.
It took every ounce of strength I had, but I picked up the hospital phone and told the operator I wanted a patient advocate, and I didn’t have time to wait. I needed an advocate now.
The patient advocate listened to my concerns and agreed that I had a right to feel that my needs were not being adequately addressed by my doctor. She explained the process to fire that doctor from my case. With what seemed like my last ounce of strength, I fired him. I barely had the strength or state of mind to go through the process, but somehow, I did it. For some reason I have never understood, God and the universe have always looked out for me.
I asked for a surgeon I had seen earlier in my enteritis battle. He came immediately to the hospital, and said he knew he couldn’t “fix me,” but he was willing to go in surgically, do an exploratory, and if he saw any way to improve things for me, he would do it. He promised me that there would be no permanent colostomy. He scheduled my exploratory for 8am the next morning. He gave me hope.
He was very upfront that it was a high-risk surgery and that there was a good chance I might not survive it. He said he’d do his best for me. I prayed that night that he was successful, but that if the life I would have wasn’t worth living, that God would keep me from waking from the surgery. I chose to trust, both the doctor and the universe.
I made a good choice.
I woke up from the surgery to find he had removed over 3 feet of my intestine, including my ileum (and terminal ileum,) my cecum, and about half of my ascending colon. He explained that he didn’t try to repair my sigmoid colon because he doubted he could make it better, and he was concerned he might make it worse.
I felt better when I awoke from surgery than I had felt in over eight months. Even with the three new incisions, my pain was so greatly reduced. I spent ten more days in the hospital and then went home, and spent the next six months recovering from the surgery, and learning to live with my “new normal.” I understood my eating and bathroom habits would never be the same, but at least I could eat some things and I didn’t have a colostomy bag I couldn’t open or empty.
What I did have was a constant battle with bile acid malabsorption. In case you don’t know, when you no longer have a terminal ileum or a cecum, your intestines get overloaded with bile that can’t reabsorb into your body and return to your liver. Your body, realizing you have too much bile, tries to push it out of your intestines by flooding them with water. It causes you to anally expel huge quantities of watery diarrhea and the mucous lining of your colon, often up to 20 plus times per day.
The loss of all this fluid also leaves you dehydrated no matter how much water you drink, causing frequent trips to the ER to have your labs and electrolytes determined, and have several bags of fluids administered. It leaves you with fecal urgency and often, fecal incontinence. The explosive watery stool you expel is so watery that it immediately soaks through pads and incontinence briefs, leaving a horrifying mess multiple times per day, and per night. This constant flooding with watery stool also leads to frequent UTIs, no matter how often you shower and change your clothes.
To help reduce this, you can take a bile acid sequestrant. It is a resin powder you mix with juice and drink, in my case, twice to three times per day. This mix is thick, grainy, and gritty, and you have to use bleach on the drain in your kitchen sink weekly or the resin will coat and clog the pipes, and the sticky sweetness will attract drain flies and fruit flies.
Without the ileum (a section of your small intestine) you can’t absorb certain vitamins, no matter how much of an oral supplement you take. It just passes through you without being absorbed. I’ve had constant B12 and D deficiencies, which left me weak, fatigued, and low on energy. Biweekly B12 injections and weekly vitamin D sublingual gels, along with large quantities of vitamin K, E, and O supplements, and a good multivitamin are helping to prevent ongoing malnutrition.
Not only do I have a difficult time absorbing many vitamins, but my food choices are also extremely limited. The list of foods I cannot eat is 14 pages long. The list of things I can eat is a single page of bland, low-fat, low-fiber, and low-residual foods. For many foods, the only way I can find out if I can tolerate them is by trial and error. The error part can be very painful, to say the least.
Things like dairy products (including sour cream, cream cheese, milk, ice cream, and yogurt,) whole grains, beans and legumes, seeds, nuts, greens, raw vegetables, baked goods (like cakes, croissants, and sweets,) cream soups, popcorn, rich sauces, tomato-based products, processed meats, fatty foods, fruits with skins or husks, anything with high fructose corn syrup, spicy foods, vegetable oil, butter, margarine, and cruciferous vegetables, are all on the “never eat” list. My digestive system simply can’t process these things. Even the few vegetables that are left have to be cooked until they are soft and mushy. (This “diet” makes it hard to avoid malnutrition.)
After months of living basically on Rice Krispies, scrambled eggs, plain untoasted English muffins, poached skinless chicken breast, and unsweetened applesauce, my condition ebbed and flowed, but left me basically medically homebound. After about eight months, it seemed to get much worse, but I had no idea why.
I had recurring Enterococcus faecalis (E. faecalis) and Escherichia coli (E. coli) UTIs and infections. Just to add to the “fun,” I got a call from the lab that I had a very serious colon infection called C. Diff that is contagious through contact and can be deadly. They immediately started me on a course of very specific antibiotics. This infection can be easily spread, so I had to be very careful and avoid physical contact with others. I had my home thoroughly cleaned with bleach to help as well and had to clean my bathrooms at home with a special bleach cleaner at least twice a day.
This infection, the partially clogged bile duct, and abdominal inflammation, all added to my worsening diarrhea and fecal incontinence no matter what meds I took or how careful I was with my diet. Nothing seemed to help. After a while, I just learned to live with it. I stayed at home, and my world became very small.
Then I started having unexplained pain in my abdomen and lower back that would leap from just barely bothering me to 10 out of 10 on the pain scale. I’d have seriously low blood pressure and almost pass out, and then as the pain spiked, my blood pressure spiked to over 180/100, which required me to take Clonidine to level it off.
Eventually, CT scans and ultrasounds named the culprit. It was a medical term I had never heard – “gallbladder sludge.” It was most likely also caused by my cancer radiation treatments, and this sludge was causing my bile duct to be partially blocked, and my gallbladder itself to be distended and spasming.
Believe it or not, the ER sent me home with an anti-spasmodic medicine and didn’t even recommend follow-up of any kind. I casually mentioned this to my rheumatologist at my next appointment, and she was shocked they hadn’t sent me to a specialist.
She gave me a very good piece of advice. She told me, “If your abdominal pain goes up and you spike a fever, call an ambulance and get straight to the hospital. Don’t hesitate. Have them remove your gallbladder. It’s going to have to go, so do it sooner rather than later.”
A week later, that is exactly what happened. Abdominal pain, lower back pain, pain by my right shoulder blade (all classic signs of gallbladder pain) and a 102.5 fever. I called. I went. She was so right!
This was the same hospital where my life-saving surgery had taken place ten months earlier. When I got to the ER, I asked the head ER nurse if the doctor who did my previous surgery was on-call. They told me he was off that weekend (it was a Friday morning.) They told me the name of the surgeon on-call, and at least it wasn’t the doctor I had fired before. I wasn’t happy about it, but I resolved to let a doctor I didn’t know remove my gallbladder.
In one of life’s unusual twists, the head ER nurse popped his head into my room a few minutes later. He said, “I texted the surgeon you wanted, and he said that for you, he would come in on his weekend off.” And that is exactly what happened. He came in later that morning and removed my gallbladder the next morning. The relief I felt when I found out he was going to be my surgeon again is beyond words.
After the surgery, he told me it was a good thing I had my gallbladder removed, that it really needed to come out. It was inflamed, distended, and infected. I stayed a total of four days in the hospital. I came home and spent about two weeks taking it easy and recovering from the surgery.
The strangest thing happened during my recovery. The horrendous bile acid diarrhea slowed down, and then almost stopped. Days have gone by, and now that I no longer have a gallbladder to flood my intestines with bile, I started to have fewer bowel issues. (After your gallbladder is removed, the bile just sort of drips a little at a time in smaller amounts throughout the day.)
I’ve finished my course of antibiotics, so my C. Diff infection has resolved. I’m not having such horrendous bile acid malabsorption. I’m staying hydrated. I’m almost afraid to mention how much better I feel because I’m afraid I will jinx things, and it will go back to the way it was.
Sometimes, you don’t even realize how sick you are until you are halfway recovered. It feels like this is what has happened to me. Without the constant bile acid malabsorption, I’m not constantly fighting dehydration, my skin has stopped looking like crepe paper, and I’ve stopped losing layers of skin at the tiniest bump or scrap to my arms.
I’m only two weeks out of my gallbladder surgery, so who knows how this story will end? I’m glad to say I will be here to find out.
As children, we are told we can achieve any goal if we just try hard enough and don’t give up. Television commercials tell us this. Motivational speakers tell us this. Often, our own parents tell us this. The harsh reality is that, sometimes, we choose goals and paths that are beyond our physical, emotional, financial, or intellectual abilities. We all have limitations, whether or not we choose to acknowledge them.
The reality is there are many goals we can choose from, many ambitions we can follow, many careers to choose from, so the thought that each of us has only one path to follow is erroneous. There are thousands of things in our universe that can make us feel valuable, worthy, needed, and successful.
By learning to adapt to life’s inevitable upheavals, we can start to embrace life’s limitations, make life choices that will fulfill our reasonable dreams and expectations, and stop worrying about who other people think we should be. Resilience, flexibility, and adaptability are the traits that lead us to a happy and fulfilling life.
In November 2022, I fulfilled my lifelong ambition of writing a book. I have been piecing together the parts of my story for the past two years through my online blog http://www.janmariet.com along with at least 100 pages of new material. I hope you will enjoy reading part of my life remembrances and responses in “Embracing Life’s Limitations: Letting Go of Who You Were Supposed to Be.”
While my book is still very new to the market, it already has 5-star reviews on both Amazon and Goodreads.com. I’d like to share a couple of the reviews with you.
I hope you decide to share my life story. There’s so much more to tell!
It’s hard to believe this photo was taken just one year ago today! It seems like a lifetime ago. My battle with cancer started in February 2021. I had my radical hysterectomy on May 3rd, 2021, and in this picture, I was about 6 weeks past my radical hysterectomy and had just started Chemo and Radiation. When the first clump of hair fell out, I made up my mind — no tears, just smiles, and I was going to lose my hair on my own terms. I went to my hairdresser, and had my hair shaved down. This way, when it continued to fall out, it was just bristles that lined my sink and shower, not huge clumps of hair.
I made up my mind, there and then, no tears, just smiles. Every single photo I took after that, whether I was hooked up to chemo, coming out of radiation, or wearing my head covers, all anyone was going to see was a smile. You know that saying — “fake it ’til you make it!” But I didn’t have to fake it too long. The smiles and the happiness came back into my life, even through some very dark times.
I think I have my mother’s stubbornness when it comes to things like this. Even when cancer was taking her life, all anyone else saw was smiles — except her inner-sanctum (my Dad and I.) We saw the pain, the tears, and the frustration. All anyone else saw was smiles. I think I was the same way. There were only three or four people (my inner-sanctum) who ever saw anything but the smiles.
Before My Cancer Diagnosis After Cancer Treatment & Intestinal Surgery
The smiles in all of these pictures are genuine. I lost my hair on my own terms, and I felt quite victorious. There is more than one way to let cancer know that you aren’t going to let it destroy you. This was my way of saying, “you may ultimately take my life, but you won’t take the happiness in my soul.“
A little over a year ago, I was diagnosed with cancer. First, I was told it was Stage 1. Then, it was changed to Stage 2. During the surgery, they realized it was really Stage 3. When I heard the word “invasive” I thought it couldn’t get any worse. Then I heard “aggressive radiation and chemo, followed by brachytherapy.” Shocked? Yes. Heartbroken? A bit. Realizing what was about to happen to me? No freakin’ way!
My mind and my body are forever changed because of that one simple word – Cancer. I have surgical scars and radiation burns that will never go away. The huge T-shaped abdominal scar will always look back at me from the mirror.
My body and mind are still dealing with the repercussions from chemo, radiation, and brachytherapy. Every single day of treatment, I knew that cancer was trying to kill me, and the treatments themselves were poisoning and burning me. That’s a hard reality to wake up with each morning.
Every single day, I am sick to my stomach and weak. If I happen to have a good day, there will be at least two bad days that follow. It is always three steps forward, and two steps back.
Every single day, I wonder “Is this going to be my last day?” Every single day, I remember that today could be the day it comes back. This could be the day it spreads. This could be the day it finally kills me.” Or it could just be a sunshiny warm day. That uncertainty is hard to cope with, every single day.
Inside, I’m angry that I had to do so much of this alone, at least, physically alone. I’m angry that some friends and some family just disappeared when I needed them the most. I’m angry that no one will ever really truly understand what I’m going through. And inside, I’m so grateful to those wonderful friends who were there for me; who “showed up,” long-distance, if not physically. It is so hard to be angry and grateful at the same time. It’s like having a love-hate relationship with every breath of air you take.
I’m heartbroken that the old me is gone. I’m angry that every day I wake up, I’m “Cancer Girl,” not Jan. And I know I always will be, from this point on, and that anger is really hard to deal with on a consistent basis.
I know the odds that it will come back, and what that means. “Thirteen percent chance of being alive in 5 years” – those words resonate in my brain more often than I care to mention. I carry that burden every day.
I’m angry that I have survivor’s guilt, as I watch so many in my cancer support group announce they are NED (No Evidence of Disease) and celebrate, only to die in the arms of their family two or three months later! It is so unfair to endure months and months of painful treatments, be told you are okay now, and then within months, you’re gone! How can there be any fairness in the universe when this happens to people who fought so bravely?
Sometimes I get angry when people tell me how strong I am, because I never had any other choice than to be strong. I’m sad because I can’t plan, or even imagine, my future. Every thought of a future starts with the words “if I’m still alive…”
My life, which has mirrored my mother’s life so closely, has shown me the frailty of life. She fought, was declared free of cancer, and two year later, she died with my Dad and I holding her hands, of a Stage 4 re-occurrence. Having done and seen that, how can not know how uncertain my future is. Do I even have a future?
I watched both of my parents die from this unspeakable disease. I was with both of them in their final moments. I’m the one who gave both of them support and comfort at the end. And I wonder, will there be anyone to hold my hand when my time comes? And truly, I know there probably won’t be.
I’ve hated cancer, not just for the pain of it, the treatments, the surgery, or the radiation burns, but for making me weak and dependent, and making others pity me. It’s something I never wanted – other people’s pity. I have always been so self-sufficient, able to adapt to every obstacle that life has thrown at me, but that may be gone now – maybe forever.
Tomorrow, I will probably be back to my cheerful appearance and demeanor. Tomorrow, I’ll say “I’m fine” again, even though I don’t think I’ll ever really be fine again.
Today, I’m sad, and angry, and disappointed, and losing hope – but just for today. Tomorrow, I’ll put the “I’m fine” mask on again, and even if it’s pouring rain, I’ll smile and notice the sweet smell of honeysuckle.
You may have noticed it has been over 6 months since I’ve posted. So much has happened since then, but I wasn’t ready to write about it until now. You see, in March, I was diagnosed with invasive cervical cancer.
After many doctor’s appointments, MRI with contrast, pet scan, a D&C, and surgical procedure to gather cells to test them, I was scheduled for a radical hysterectomy, bilateral salpingo-oophorectomy, and lymphectomy.
My MRI showed the tumor to be about 1.6 cm. However, I have bilateral hip replacements, which caused distortions in the MRI. So then, a pet scan was ordered. It showed the tumor to be about 2.4 cm. This meant that surgery was the best option.
But even the best laid plans do not always work out. Once the surgeon had removed my uterus, she found that the tumor was actually very deep and very tightly curled. The tumor was actually over 4.0 cm, which means that surgery alone would be ineffective. She also found that my cervical cancer had spread into the vaginal cuff and vagina, which meant she had to remove 2/3s of the vagina. She removed 11 lymph nodes. Several of them were non-functioning, but fortunately, none of them were malignant. Additionally, part of my abdominal wall had to be removed because of the cancer. The hardest part – my cancer had intravascular invasion. That means it was spreading.
This meant, that after 5 weeks of recovery time from the surgery, I had to undergo aggressive chemo and radiation. Radiation and chemo kicked my butt! I have never felt so sick and weak in my life. For almost 4 weeks during chemo, I couldn’t eat or drink anything. This meant many trips to the chemo center to get IV fluids. It also meant that I ended up losing 42 lbs in the 6 month period. I’m don’t mind losing weight healthfully, but this not the way I wanted to lose it.
Finally, 6 weeks after chemo and radiation ended, I am finally starting to feel okay again. I have energy again, and I’m able to eat better (although I am still very limited in what I can eat.)
Did they get it all? It will be three more months before we can collect cells and do imaging to find out. Even if I come out as NED (no evidence of disease) I will have to have imaging every 3 to 6 months for the rest of my life.
Even with surgery, radiation, and chemo, my chance of being alive in 5 years is between 32-35%. The odds aren’t great. However, I remind myself that none of us know when our time will come, and that I’ve had a great life, and done almost everything I ever wanted to do. I live each day as if it were my last – finding joy and happiness in each and every day.
The hardest thing was that as soon as I was diagnosed with cancer, I had to stop taking my biologic, which treats my PsA and psoriatic spondylitis. There are no other drugs that can help at this point because of my kidney disease, so there is nothing I can take to treat my PsA and psoriatic spondylitis. If I go back on a biologic, and even one spec of cancer has been left behind, the biologic will make it grow and spread very quickly, and I’m not willing to risk that. Of course, my PsA and spondylitis has come back with a vengeance.
So that is where I am, right now. Between surgery, radiation, chemotherapy, and brachytherapy (internal radiation), I spent the past 6 months either in bed, with no energy, throwing-up for hours on end with constant nausea and diarrhea, or in cancer treatment. My GI tract is damaged, my pelvis has softened from the radiation which is causing one of my hip replacements to loosen, and my left knee gave way, so now I have to wear a leg brace on the left side. I won’t lie, it was a horrible experience.
But in my heart, I know I fought as hard as I could. Whether I win or lose this battle, I know I did my best. Whatever the outcome, I’m okay with that. Life is beautiful all the time! I am happy for every day I get, and I’m finding the happiness and joy in very single day I’m blessed with.
Starting a blog is an idea I’ve thought about for a while. I enjoy sharing my ideas and experiences with others. I realized the therapeutic power of writing as far back as 4th grade. It is a format that has served me well throughout my life.
I especially want to thank my friend Leeann for encouraging me to start this blog. The support of friends is what makes life worth living.
Count your blessings, name them all one by one.
