living with cancer - watchful waiting

I am a patient man but when waiting for a medical procedure to be started I don't have a lot of experience with this, so I talk to other people and scan the internet.

For the second source, I am more cautious; don't want to get caught up with laetrile [apricot pits or B-17 mega-doses] or psychic energy bracelets, since I suspect that mucking about with experimental therapies [the former] and placebos [the latter] may be a bit late in the game, and, besides, does B. even want to consider then now?

But treatment hasn't started, in large measure due to other complications that might be minor when having a broken leg recast; but major when considering the potential effects of chemo if, say, one's immune system is already compromised.

So I am drawn to learn more about the idea of "watchful waiting." Watchful waiting is not a euphemism for doing nothing, but rather it is the decision to delay treatment in favor of careful monitoring for the progression of cancer. Watchful waiting may also be referred to as expectant management, conservative management, observation, or surveillance.

I realize that some of the sources I have looked at identify cancers other than esophageal cancer, but I suspect there is wisdom to be gleaned from these other sites as well.

Cancer Research UK notes that

"...It is hard enough to cope with a diagnosis of cancer. If you then have to wait a few weeks or months to have scans, or begin treatment, you are likely to feel very frightened and frustrated. Many begin to worry that the cancer will spread during this time. But cancers usually grow very slowly and this is not likely. Most cancers develop over many years and do not show up on a scan until they have been growing for some time. So waiting a few weeks for a scan or treatment does not usually affect how well the treatment works.
     You will start your treatment sooner if your doctor feels your treatment is urgent. Your doctors would not make you wait weeks for treatment if they thought it was going to reduce your chance of being successfully treated.
     It may help to let your doctor know if you are worried about waiting for your treatment. It is likely they will be able to reassure you that although waiting a few weeks for treatment is very hard, overall it will not change your outcome."

Of course, on weekends, the specialists are not likely to be around to reassure you. And the on call doctor may or may not know anything about your case, condition, or frame of mind.

As one sitting beside the bed, the angst remains high as well. But, as the folks say, you watch and wait. I pray for an end to the set backs.

---

RESEARCH SOURCES: 1- Cancer Research UK ~ Waiting times for tests after diagnosis; 2- Prostate Cancer Treatment Guide ~ Watchful Waiting Description; 3- The Wandering Visitor ~ Are you the on-call doctor?

mental health - Recovery is not treatment

"Recovery" is not a "treatment modality". For at least three decades [longer, if you go back to Clifford Beers] advocates, ex-patients and dispassionate observers have repeatedly argued that people can and often do, "recover" from long lasting disabling, debilitating conditions and experiences.
     At the same time, the idea was scoffed and dismissed by high ranking administrators and clinicians, citing [still] the ghosts of Kraepelin and Beuler as the rationale for why such an idea was untenable. "People don't recover from 'mental illness.' Their lives are lost and so is any hope for them doing much better" the clinical careerists would steadfastly maintain.
     Little or no thought was given to asking patients in mental hospitals what might be their wishes, hopes, dreams, or aspirations to achieve.
     Bean-counting bureaucrats spoke of "bed spaces," "treatment modalities" and "managed care." They asked drug companies when "the next miracle drug cure" would get people out of institutions and back on the streets.
     The standard response to those who had different ideas about treatment, care or rehabilitation, was to ignore them, keep them from the decision making process and to demean and invalidate the critical voices that offered options.
     Now, times have changed. Budget constraint called for innovation and "outcomes." Major funding sources started telling them that "recovery is good"! Gradually, those same clinicians and bureaucrats who walk past patients without seeing them took up the call.
     However, while the language has been embraced, other obstacles remain. "Clients" get wheedled and cajoled to large group meetings and say the process is "patient driven." Abusive staff and practices continue unabated. Known wrongs that take place fail to get "substantiated" when only patients witness those wrongs.
     How can this be? That bureaucrat driving his new custom SUV to the workplace while the patient gets penalized by Title 19 with "spend-downs" on maybe less than $500 a month. Patient driven huh!
     Folks, you don't have a clue.
     Admittedly, the samples mentioned oversimplify the problems inherent in social injustice and lack regard for people with mental illnesses. Administrators, Nurse Educators and other who shape professional opinion are still no different than the society at large. But my point would be the same no matter what quick capsule glimpse got noted.
     Recovery is not a treatment modality! The reasons people can and do recover are many and multifarious. But they come as much [or more] from within.
     "Recovery" may or may not include taking medications. For John Nash [the subject of the film A Beautiful Mind] they by and large did NOT, no matter what the film said.
     "Recovery" may or may not include assistance from mental health programs. In the case of survivors in the Vermont Longitudinal Study in 1987, for a goodly number it was in spite of what services the "system" provided.
     Recovery is a process It involves learning to live with complex and inexplicable phenomena [that many may call delusional], of freedom from unrealistic pressures to "get over" that phenomena within discrete time frame, and of being considered, cared for and loved as a fellow human being by others. Simple as that.
     How much more difficult this is to achieve in a society and culture that does not value those souls who are not immediately responsive to time-motion-study lifestyles. So challenging to those who drive efficient bureaucrats to distraction with abstruse, and often unexplainable questions. In the long run, it may call for dramatic and complete changes in cultural attitudes and norms, not something so easy to implement when it isn't even discussed.
     So...if you, the fashionably dressed mental health careerist can grasp this, then next time you wish to speak to someone -anyone, even one of your professional colleagues- about "Recovery" for people with living dramatic, even severe, cognitive / perceptual dissonance, then do so only after you actually drop your important paperwork and pre-occupation with meetings and give someone the time, energy and effort to sit with and actually get to know some of those persons who walk past you daily, but of whom you only know by diagnosis. Incidentally, it's a whole lot cheaper than funding the psycho-pharmaceutical companies, but takes longer to see results.
     Now that would be a step toward recovery.

---

SOME RESOURCES: Clifford Beers' A Mind That Found Itself, National Empowerment Center, MindFreedom, Mary Ellen Copeland's Self-help Strategies

health care - contrasts

I work at a large inpatient psychiatric facility. As readers may surmise, of late, I've also been spending a lot of time at a large medical hospital. I can't help but find myself intrigued with the contrasts.

Attentiveness to care is one of the most glaring, as it were. At the medical facility, staff conducting routine checks on patients take time to speak with patients, they ask after their well-being, and respond to concerns about some fresh malady.

In contrast, where I work, there are many staff [not all] who seem to take umbrage about "being forced" to conduct a census, where all they do is fill in a check mark or an "X" on a pre-printed list to account for a patient on the unit. Forget about the niceties of taking a second to acknowledge the patient's presence.

I wonder how different my workplace might be if those who behave as if speaking to a patient is a demeaning imposition, actually took the time to show concern for the folks they are charged with taking care of.

Another contrast is the presence of numerous clinical specialists walking about and on the units ~ and on different work shifts ~ and speaking directly with patients about their current medical condition. In less than a week, I have been present on four separate occasions when different doctors actually came and spoke with my friend - at some length - about steps being taken in his care. One of the docs was a management level administrator in her discipline. I have observed this happening with other patients as well.

In contrast, unless the clinician is assigned to the unit, it is uncommon for specialists to speak with patients about their care or treatment. Even rarer for managerial personnel to show up on the patient wards at all.

Again, if they took they time, how might it affect the quality of care provided to the patients were I work? Just wondering.

living with cancer - Going Haiku

""The price of freedom is visible here"

After four days into the admission with still no real communication from clinicians, Bill yelled out at the nurses. A diminutive, yet authoritative-acting foreign doctor gathers the troops around his bed to tell him he caused a freight by yelling [a behavioral anomaly readily addressed with anti-anxiety meds].

This group's "show of concern" at least provides him the chance to express his frustration's source. It seems the diminutive doctor, rather than having the courage to acknowledge she doesn't know the answers to his questions, instead responds to them by evasive language and seeming coy.

The man just learned he has cancer! Going haiku doesn't help.

When the doctor cannot answer a question ~ and instead avoids it ~ it is normal to assume the worst. On the other hand, a frank admission that you just don't know, while not providing satisfaction, is at least a lot more clear.

What is it about some doctors, so frail they interpret loudly stated verbal expressions of anguish, anger, frustration and loss as potential indicators of lack of control ...of mental illness !?!?!

The irony here is that the West Haven VA Hospital is riddled with posters offering help and assistance for combat veterans with PTSD. And while being diagnosed with cancer is not the same as combat stress, hearing you have cancer can be traumatic, it can be stressful. Is it too much to ask that all clinicians working there at least know this? I think not.

The coy doctor vaguely admitted she did not know what to tell him, and introduces the oncologist, who can, and who provides a clearer description of what the past two weeks of lab tests, procedures, poking and prodding have found. The answers aren't great, but the news is encouraging: that the state of esophageal cancer Bill has is treatable.

---

UPDATE: In fairness, aside from the one glitch of a clinician being unclear about details, the care and attention Bill has been getting has been exemplary. Each of the people under Step Down's care have unique and difficult medical problems, yet the staff remain on top of their mission while remaining thoughtful to what the folks they are working with go through. I'm glad they are there.