Read the visual story
Today, six years after her cancer diagnosis, she has now been given the “all clear.” Before she can begin to feel happy about the news, Petra G. had to let it sink in in peace and quiet. “I felt like I was living in a bell jar, and cancer leaves its mark,” says the now 60-year-old, who wanted to stay at the University Hospital Bonn for her entire course of treatment: “Because everything’s very well organized on the Venusberg Campus despite it being so big.”
Welcomed with open arms in exceptional circumstances
For Petra G., the fact that her story has a happy ending is thanks in no small part to the hard work done by the patient support workers at the Center for Integrated Oncology (CIO) Bonn, which is based on the campus. “We support and look after patients throughout their treatment, adapting
what we do to their individual needs,” says Christine Luppus. Although her job title in German contains the word “Lotse,” or “pilot,” she doesn’t feel that it really reflects what she does. “We’re more than just a guide through the hospital. We take some of the burden off the patients, who also feel that they get emotional support from us. In this way, we do our bit to make their therapy a success.” The 56-year-old and her 46-year-old colleague Geraldine Leven are both qualified nurses. The pair are there to help cancer sufferers facing an existential crisis, and the tools of their trade are an inkling of human nature and a whole lot of empathy.
Swollen lymph nodes following a heavy cold: time and again, Petra G. would be given the same, rather innocuous diagnosis, right up until she underwent surgery at the ENT clinic at the University Hospital Bonn. The biopsy revealed cancer with an unknown primary tumor, or CUP syndrome for short. Immediately after being referred to Medical Clinic III for Oncology and Hematology, which was now six years ago, the new cancer patient met the patient support worker Christine Luppus. “The diagnosis hit me like a sledgehammer, because I wasn’t prepared for it,” Petra G. recounts. “But I wanted to fight.” “However, I was still all shaken up from the talk I had with the physicians at the clinic who were treating me, and there were loads of other things that I had to deal with as well. Then Christine Luppus welcomed me with open arms. Meeting her gave me reassurance.”
Being the link between the medical team, the outpatient clinic and the patients
This is where the patient support workers at the CIO Bonn come in: they take patients under their wing, comfort them and organize their appointments as part of the treatment plan that will have been agreed by a tumor board and then put together by the team of treating physicians. For instance, a safe course of chemotherapy will require a number of preliminary examinations such as ultrasound and lung function tests but also the placement of a “port,” which allows medications to be administered over the long term. “It’s important to group these appointments together in advance so that our patients don’t have to come into hospital too often,” Luppus says. “To avoid tiring them out, we have to coordinate it all very well so that no time is lost.” This is done in close consultation with the physicians and the medical staff in the oncology outpatient clinic.
Sensing what their charges need
As treatment progresses, the patient support workers are on hand at all times, looking after their charges and accompanying them to appointments on the Venusberg Campus if necessary. Besides giving their patients help and advice or getting their hands on a wheelchair with the minimum of fuss, they also put them in touch with a psycho-oncologist, dietitian or social worker, for example, if they have been referred by the physicians treating them. The patient support workers make sure that everything connected with a course of cancer treatment runs as smoothly as possible. “By talking with the patients as individuals, we establish a relationship built on trust and are engaged in constant dialogue,” Leven says. She and her colleagues know the person behind the patient record and can respond ad hoc to the changing needs of the individual, liaising closely with the team of treating physicians.
Imparting a feeling of security
“Everyone’s got our phone number and can talk to us at any time,” says Luppus. This was what Petra G. did when she experienced drastic weight loss while at home. Luppus told her: “You need to come in right away.” The cancer patient was then admitted to hospital for parenteral nutrition (PN) via intravenous infusion and was looked after until she had regained a few pounds: “Without the patient support workers, I’d have felt very lonely over the past six years. They know what they’re talking about and what they’re doing. They’re irreplaceable.” The patient support workers make use of the supervision that they are offered in order to reflect on what they have experienced in their day-to-day work. They also try and strike a healthy work/life balance by getting out into the countryside, but their job still leaves its mark on them. The fate of their patients often accompanies them back home. “We see day in, day out how people handle a cancer diagnosis,” Leven says. “It’s often a matter of life or death. We can’t simply peel off what we’ve experienced and leave it at the hospital, because we’re committed. But if we weren’t, then it wouldn’t be the right job for us, would it?”
