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A patient speaks

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Medical and Pediatric Oncology 31:536 (1998)
A Patient Speaks
Bernard Lucien Hohenberg
In cancer, one is dealing with an illness where much of
the effort is exerted against adverse odds, and one must
therefore consider all things concerned with it in this
light. Vast sums of money are expended, some leading to
dead ends, some along promising avenues. Efforts are
made to obtain funds for the most esoteric research—all
in a battle against the tumors.
However, in the field of dealing with the patient, not
enough is done to make ebbing life tolerable. Certainly
lip service is given, but the action does not always match.
The real focus is on the physical results of chemotherapy on the cancers themselves. The patient, the person, knows himself to be of basically secondary interest,
medically speaking. There is much talk about ‘‘quality of
life’’—but when the patient develops mouth sores so
distressing that prevent even the intake of water, let alone
the acidic juices brought to the bedside, the medical
world’s vision drifts to the far distance, and the molecular cures of the future.
In the meantime, the suffering is here and now.
Bedridden patients get bedsores, like mine. Nurses do
their huge load of regular work, so that the problem is
delegated to a wound team, like a ‘‘SWAT’’ team, on an
irregular schedule, and with inadequate results. Much of
the treatment appears to be trial and error, the palliative
methods anecdotal.
Nothing really helps much.
The pharmaceutical field throws money at, and concentrates its efforts on, the wonder drugs, the dramatic
breakthroughs, the fields of highest publicity and return.
Fame and fortune come from penicillin, not poultices.
So it is left to the people who deal daily with the
patients, the NCOs of the vast medical army, to devise
methods of relief, with proportionately little help from
the big money and the big guns.
They do their best, but . . .
I didn’t know it was so difficult to die.
I’m not afraid to die; I’m not even sad, and I think I’m
ready. It doesn’t matter if it’s a few more weeks, or days.
I’m ready.
But in the meantime, I just wish they could keep my
behind more comfortable . . .
Mr. Hohenberg’s observations and comments were read by his widow on the occasion of the first Bernard L. Hohenberg Memorial
Lecture. It was given in Philadelphia on Thursday, May 28, 1998, at the University of Pennsylvania under the sponsorship of the
Department of Dermatology.
The first Lecturer was Professor Richard M. Allman, Director of the Center for Aging at the University of Alabama at Birmingham,
Alabama. The lecture series was endowed by Mrs. Hohenberg to stimulate laboratory and clinical research surrounding the issue of
pressure ulcers, especially finding ways to heal them once they develop. Thus, Professor Allman’s lecture was appropriately entitled
‘‘Pressure Ulcers: Lessons From Observational Studies and Clinical Trials.’’
Mr. Hohenberg’s eloquent statement should remind all physicians that it is often the not-so-‘‘little things’’ that matter most to patients,
particularly when the sparks of life are fading.
Giulio J. D’Angio
© 1998 Wiley-Liss, Inc.
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