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Symptoms & Needs

Support for post-treatment symptoms and needs (emotional, physical, functional, financial)

Cancer Survivors Wonder “What or Who Do I Get Angry At”?

Dr. Josie’s Attempt to Look “Angry” – How Did I Do? 😊

Recently, a survivor asked me “who or what to get angry at” when we are diagnosed with cancer? And I think there is a lot encompassed in this fascinating question. It caught me off guard for a minute. I have had a few days to think about it and here is my first attempt. I welcome your views!

Is the question “who/what do we get angry with” the same question as “who/what to blame”? Blame to me refers to causality and responsbility. In general, I think no blame is to be had as there is still a lot unknown about our body, “the black box”. With the exception of some exposures that are known to increase cancer risk (e.g. asbestos, nicotine, HPV), I do not believe that blame can be assigned at current time and age.

But back to the question – “who/what do we get angry with”? To me this question refers to “where do we target our anger at”? The question implies that anger is like a “hot potato” that has to be gotten rid of as soon as possible before we “burn our fingers”. It may be acted out and projected onto targets with whom we feel safe (e.g. our loved ones) or anonymous (e.g. strangers or objects). We may spend a lot of time and energy on suppressing or numbing our anger (with exercise, alcohol etc). Many of these approaches are unhealthy, not safe, or even destructive: they may make us angry that we are angry, perpetuating our anger only more.

But what if we look at anger differently? What if we view anger as a sign that nudges us to pause and reflect on what we are dissatisfied with or what is bothering us? Anger is a normal emotion to have and represents a validated stage of the grieving process, which many cancer survivors may go through as they “try to find the new normal” in the aftermath of cancer diagnosis and therapies. 

It starts by recognizing that you are angry – this acknowledgment itself may already be cathartic, validating, and healing. Sometimes the “working through” your anger is quick and easy – but sometimes it may be more painful and challenging, requiring honest self-reflection and support from our loved ones and perhaps even a professional. All we can do is our best. 

If we think and feel our way through our anger, then our anger may become less intense or even disappear. The freed up energy can instead be redirected to unstuck ourselves and proceed to the 6th grief stage: finding meaning and purpose. Pursuing new adventures and making new memories. You are more than a (permanent) reaction to your cancer diagnosis – it does not need to define you – you can rise above it and transcend it – in your own unique way – at your time and pace. My wish is that you treat yourself the same way as you treat others…..with more compassion, kindness, respect, and forgiveness. 

Cancer – Saying Goodbye

Cancer – Saying Goodbye

Everyone who knows me knows that I have a really hard time saying goodbye. I am not sure why. Maybe it’s just a quirk of mine. Or maybe it’s because I have lost friends and family members due to moves (this was before the internet!) and illness. I guess that’s what makes me me.  

You may miss a person, a pet or even the ‘old’ you before cancer hit. It may last for one day or one week or one month or one year or indefinitely. The cause may be that someone is moving to a different part of the country or the world — or leaving our world. 

The loss of someone (or something) who was near and dear to you leads to grief. Grief never goes away, as you may have experienced. Over time, as you pass through the grieving stages in your own unique way and order, things may become a bit more bearable and maybe even give new meaning to your life. 

Connecting with others who have also gone through a loss may help (such as this Facebook group by David Kessler). Sharing the pain. Feeling less alone. Learning how to put words to your feelings to allow you to create your narrative. 

We all tell ourselves stories that sooth us. Our stories are defined by our personal perspective, driven by our culture and religion and upbringing. Only you can write your story, which you may refine or even rewrite as you get older and gain new insights. 

No one knows for sure what happens to our loved ones after they pass and so no one can refute your version. 

I believe that we will see each other again — in the afterlife, but even in our current lifetime, which might be evidenced by, if you are open to them, certain signs that hint that your loved one is signaling you. There are more concrete ways to see our departed loved ones again, by replaying audio or video clips, or even leaving a voicemail for them to feel like you are connecting as before. 

Saying goodbye to someone is so final. It puts a lot of pressure on the moment, making sure the last impression is the one you would like to leave them with. Have you said and done all you can or would like to? It’s almost paralyzing. Maybe that’s why I prefer to not say goodbye, but “Until we meet again!”

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Cancer and New Years Resolutions

Cancer and New Years Resolutions

New Year’s Resolutions. I am sure many of us are getting ready to make ours, even if just to be ready when we’re asked about them. But for whom are we making these resolutions – for others or ourselves? 

Almost everyone seems to make them. Keeping them is harder. Maybe we put the bar too high or maybe the problem is that we’re creatures of habit. Many resolutions aim to deprive us of something (e.g. food) or do more of something we don’t enjoy (e.g. exercise). If we don’t follow through on them we can feel like failures and lose trust in our ability to accomplish change, often resulting in disillusionment. 

I wonder why we make them. I guess the reasoning behind it may differ from person to person. In general, they give us meaningful goals to work towards and perhaps a deadline to hold us accountable. The anticipation of them gives us hope for a bigger, better, healthier life. This annual inventory-taking may allow us to feel that we’re keeping an eye on the big picture so that we don’t stray too far and become too loose and free. Perhaps the attraction is that they give us a sense of belonging to a group of people who are also working on the common goal of bettering themselves. 

It’s probably clear that I’m not a big proponent of these resolutions, but it’s hard to escape them. Perhaps we can approach them differently this year. After all, even if you decide to be nicer to yourself, then you have made a resolution. Or if you decide to not make resolutions, then you have made a resolution, too. 

There’s a fine line between accepting who you are and trying to improve on yourself. If and when you make your News Year’s resolutions this year, I encourage you to take some time to give yourself credit for how far you’ve come in terms of your emotional well-being, health and functional status, social interactions, spiritual/religious growth, and financial or vocational goals. Taking stock of your progress instead of simply focusing on ways you want to change may allow you to like yourself ‘just the way you are’, as Mr. Rogers would say!  

Cancer: Am I Going Crazy?

Cancer: Am I Going Crazy?

Almost everyone who is on a cancer journey will wonder at some point, ”Am I going crazy?” This may be one of the best kept secrets that each of us carries.

You may feel you are going crazy or “losing it” when your brain is overwhelmed, desperate, or conflicted by competing priorities like trying to handle your daily responsibilities while dealing with fear of death and prematurely reflecting on your life. This is a scary experience. It can make you feel embarrassed, ashamed, alone, and misunderstood. You may begin to see the world through a negative lens, becoming overly critical about past actions or becoming a doom thinker about the future. This often perpetuates the vicious cycle of isolation and lack of support. 

There is not one magical solution for this suffocating mountain of pressure and doom, but being aware of these dynamics can be half of the solution. It will help you try to find a way to break down your responsibilities into smaller steps, manage your time better or ask for help from others. Reaching out to those whom you feel can support you, changing your perspective, or finding a method to express your inner fears, such as talking, writing, singing, or painting can help.

These changes may be slow and subtle in the beginning, but as you gain momentum, growth can begin, allowing surviving to become thriving. 

Remember that there is no manual that will help resolve everyone’s stress. We are all winging it, even if we look like we always have it together. And really, what is normal, anyway? 

Cancer and the Meaning of Life

Cancer and the Meaning of Life

The meaning of life. Such a loaded term. It means different things to different people at different times and phases of their lives.

You can look at it from many angles — psychological, spiritual, religious, existential.

Do you take it, find it, give it, create it, pay it forward? Is it the same or different from having a purpose in life or leaving a legacy?

Such an important yet indefinable concept, a moving target

You may not think about the meaning of life until you  are confronted with your own mortality. Most people don’t. Then you may not have enough time, energy, stamina, or resources to accomplish and realize your hopes and expectations. You may need to modify your expectations which can lead to frustration or even despair.

Should the meaning of life be about making yourself or someone else happy? Helping yourself or helping another? Making change on a small scale or a large scale?

Unless you live on a deserted island the ripple effect makes it hard to not have an effect on the world. Your small actions and gestures touch other people who touch other people, and so on. We are all connected.

Finding meaning helps you to stay on a path, but don’t let the pursuit of meaning become your purpose in life. You’ll be doomed to fail. Humans like to try to understand everything, but the more you think about life’s meaning, the more lost you may become.

Show up. Be yourself. Do what you can. That’s good enough! Sometimes there are no answers as to why we got sick and there is no guidance for finding life’s deeper meaning and purpose. All we can do is be kind, go with the flow, and focus on the small and simple things.  

It’s About Time!

It’s About Time!

The concept of time is interesting. It doesn’t always seem to be aligned well with what we need or want to do. Sometimes we have too much time and sometimes too little. Sometimes it goes too slow, and sometimes too fast. Oftentimes we wish our time away because we eagerly anticipate the weekend or a certain event. This can make time feel like it has slowed down. Then we find that when the anticipated event happens, time flies by seemingly at warp speed! Days and weeks may feel like they pass slowly, while years pass quickly. At times, we feel we waste half our lives standing in line.

I think we all have a conflicted relationship with time. There is never enough time in life. But whether we are in a period that we enjoy or one we wish would pass, all of these times are part of our finite life. I wonder if our conflict may be helped by an evenly-suspended attention span, to be able to observe ourselves and our surroundings at every moment in time in a neutral perspective without any expectation or judgment. If we could master not being constantly engaged or disengaged, but to be evenly submerged throughout all our activities every day. By not giving preconceived importance or priority to any part of our days or lives, we could allow ourselves the freedom to find meaningful opportunities even in the rougher times. Some may compare this to mindfulness meditation activities, but these activities are short-lived, while an even attention span is one to be applied throughout the whole day. Some infinities are longer than others. 

We tend to say that time flies when you’re having fun, but then a patient reminded me that time also flies fast when you’re not having fun! Not feeling well due to cancer and its treatments can make you retreat into a cocoon and lose track of time, while the world (hopefully only temporarily) continues to evolve around and without you, almost rendering the illusion that you are standing still. In short, cancer survivors have a complicated relationship with time. Being aware of that may perhaps help you remain kind to yourself, set (realistic and do-able) priorities, ask for and accept help, and make choices (and memories, hopes, and wishes) that fit best with where you are in your journey. 

Samenesses and Differences

Samenesses and Differences

Well, it’s me again! And there is only one me! 

I often answer the phone this way. The patient usually asks, “Who is this”? (Amazingly, none of them have ever hung up on me. I guess they’re intrigued.) 

“It’s Dr. van Londen.” 

“Ah, I thought I recognized your voice.”

“There is only one me.” This is the point when the person on the other side of the line starts chuckling. 

But it’s true, there is only one me – and only one you. We are all unique. Inside and out. That’s fortunate because otherwise we would have a boring world! But we are also very similar in many ways, often to our surprise. Realizing this can be a relief and gives us a sense of belonging. 

I find it fascinating to think about our sameness and differences. When interacting with another person, I try to find the features that make us similar to build a sort of common ground and from there feel comfortable to explore the differences between us. 

We all at one point or another have struggled to balance the desire to fit in, as well as a desire to stand out (and be brave enough to show our differences and uniqueness). Being different requires courage, since it may result in misunderstanding, resistance, or perhaps even rejection and bullying, making you feel like you are swimming upstream. 

The ability to achieve a perfect balance, ideally in sync with those around you, is an illusion. It’s an always moving target. The risk of getting out of sync is higher when only one of you changes their rhythm based on personal (perhaps even life-altering) experiences. 

At some point in our lives, we all have experienced our own unique combination of milestones, such as birth, illness, marriage, death, loss of job, or financial stress. However, the details and subtleties of these events and how each of us experience them are what make us unique. You are special, but not alone. The more you communicate with others who are like you, the more you will realize your strength and uniqueness. All of us together can complement each other and complete the pieces of a puzzle. 

Trying to fit in or stand out may not be sustaining in the long run. Give yourself permission to be you, to float along as the water ebbs and flows, back and forth in a natural, unforced cycle, a particle floating in sync with the universe.

Living with Ambiguous Cancer Test Results

Living with Ambiguous Cancer Test Results

I did a medical test. I think I am fine. It doesn’t really matter which test it was, because all tests, whether screening or surveillance, whether imaging or laboratory, have the same underlying shortcoming. None of them are perfect. There is the scientific side of medicine and then there is the artistic side. A health care provider uses research data, experience, judgment, wisdom, and intuition to interpret, diagnose, and create a treatment plan. 

Cancer tests. Should I do them? If I do the tests, when do I do them? Before or after my vacation? Before or after a work deadline? Before or after the holidays? If you decide to submit to a test, beforehand, during, and after your mind can go down rabbit holes. If the results are not normal, you may be presented with further tests, which will lead to more questioning. If the results are normal, though, you often wonder, Can I believe the results? Are they truly normal? If you accept the encouraging results, it’s not long before you start wondering how long this peace of mind will last — an hour, a day, a week, a month? 

We desire to know with certainty that we are clean and will stay clean forever — or at least until the next test. But having certainty about anything in life is an illusion, in particular for cancer survivors who live in fear of recurrence. We long so deeply for comfort and reassurance that we will be fine and will go on living, but nothing will ever give us the certainty that we are looking for. 

As survivors we have to learn to become comfortable with a larger degree of uncertainty than we may have ever experienced before. That acceptance takes time, a lot of soul searching and perhaps talking with others. Every now and then your mind may wander through the mental door to the dark place. Rather than shutting this door with massive nails and locks, we should aim to be comfortable having this door open. This is easier said than done, asking our minds to not wander into the dark place too often and too far but just enough to briefly remind us of the grief and pain we have been through, to renew our sense of clarity, to not suppress fear, yet also not let it overwhelm us. In short, to find that sweet spot. 

Giving in and allowing yourself to fret and think of the worst-case scenario, but only for a well-delineated period of time per day (perhaps 5, 10, or 15 minutes) will hopefully allow you to fill up the rest of your day with healthier coping mechanisms (such as altruism, suppression, transformation, and humor). There is a time for everything — a time to worry and a time to “Eat, Pray, Love“, as a famous writer once said. Try to find that dynamic balance that works best for you and your loved ones.

Cancer: Quarantine

Cancer: Quarantine

We all desire a magical touch, a mysterious click, or a chemistry connection. However you may choose to label these experiences, they make us feel like we matter, are understood, and have a place in this world. To be touched is important for everyone, but in particular for those of us who cannot actively keep up with the world due to health issues such as those connected to cancer and its treatments. We sometimes feel pushed to the outskirts and demarginalized, wondering how we can reclaim our spot in the race (perhaps with a bit of a  recalibration to allow us to keep up)! 

You may be excluded socially because of illness when you have:

  • Impaired ability to sit, stand and/or walk around: This may hamper your ability to go to events that lack (comfortable) chairs, accessible entries or parking, or require you to walk long distances. Having to plan ahead to assure accessibility hinders spontaneous plans and can exhaust you before the event has even started. 
  • Impaired immune system: This can cause you to avoid large crowds and may make you feel vulnerable when you roam around in your local community, dampening your ability to enjoy yourself because you are always on the lookout for those who have obvious signs or symptoms of infection. 
  • Unpredictable bowel and bladder pattern: This requires you to adapt your intake of food and drink to minimize your risk of needing to urgently find a restroom. It can also draw uncomfortable attention to you when you need to use a non-hygienic bathroom. 
  • Fatigue: When you experience fatigue regularly, you need to preserve your energy for your work and family which makes it less appealing to leave the comfort of your home for a recreational or social event. 

This is what I like about quarantine — everyone is limited in their freedom to go about their lives. It makes me feel like I am not an outcast anymore. Now, we are all being accommodated and I am not any different. Everything in my professional and personal life is accessible virtually. I hope it will stay like this when the pandemic subsides so that something good will come out of this stressful time in our history and so that those who are forced to stay at a physical distance can still stay in touch socially. 

I have been able to take part in concerts, book clubs, meetings (locally, nationally, and internationally), which I wouldn’t have been able to do if we weren’t quarantined. It made me feel included. I did not feel like I had a target on me, drawing attention to myself with my inability to keep up. There’s been no need for me to awkwardly explain (or justify) myself or avoid invitations or opportunities altogether. Being able to keep up with those around me is very good for my mental health and leads to reduced physical strain.

I hope that when we come out of quarantine people will continue to think about how to make life virtually accessible for those of us with impairments. Of course, there are many benefits to an in-person meeting that can never be replaced by the cyber world, but as long as we find a happy medium and do not overshoot the pendulum from one extreme to the other, then we all at least have a choice between attending in person versus virtually. I hope that the last few months have empowered you to find a comfortable way to gently remind your healthy loved ones to continue to include you once life swings back towards the direction of  “normal”. 

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