Apps for our cellphones and tablets have opened up a world of idle leisure pursuit for us, but when such devices can make life easier for people dealing with disease, they prove their true potential for humanity. Such an app is the Janssen Time Keeper, which assists multiple myeloma patients.
When patients receive a diagnosis like multiple myeloma, waiting can become their lives, and time becomes even more precious. Time Keeper was developed to help patients reclaim some of the time blood cancer steals. The app was created in collaboration with patients and patient groups, and is an innovative new clock technology that bends time when you feed it with an open mind.
Myeloma myeloma is a relatively rare form of blood cancer that accounts for roughly 1% of all cancers, or about 10% of all blood-related illnesses. It starts in the plasma cells of the bone marrow, the soft tissue part of the bones, and is characterised by an uncontrolled growth of cancerous plasma cells; the cells that normally produce antibodies that help to ward off infection and disease. Plasma cells are often affected in multiple parts of the body, hence the name “multiple myeloma”.
What makes the disease particularly insidious, is that some patients present no symptoms initially, although cell damage is taking place. Ultimately, however, all sufferers will get to experience bone pain or fractures; kidney damage; infections and anaemia; weakness, fatigue or shortness of breath; unusual bleeding or bruising; excess urination; swollen ankles; and thirst or nausea. The pain and discomfort escalates as the disease progresses.
Over 176,000 people worldwide were diagnosed with Multiple Myeloma in 2020.6 In South Africa, Multiple Myeloma accounts for approximately 0.83% of all histologically diagnosed cancers. Most of the patients were diagnosed in their 70s, with approximately 18% of those diagnosed being below 50 years of age.
One of the symptoms of multiple myeloma is that it interferes with the patient’s perception of time. In order to understand this, we can look at that neurological concept that applies to us all: As we get older, we’re less likely to encounter brand new information. Our experienced brains don’t spend much time processing this familiar data, and this makes our perception of time change; it appears to speed up. It’s common, for example, to hear senior citizens proclaim that “it seems like only yesterday”, when they refer to an incident or event that had taken place some years ago.
Conversely, when older people have new experiences, these impressions take longer for the brain to process, and this makes time feel elongated. People who have multiple myeloma experience similar disturbances in their time perception, although these can be far more pronounced than one would typically expect in the aged.
This is where the Time Keeper app comes into its own, supporting and empowering multiple myeloma patients by giving them a concrete new way of experiencing and managing their time. For people with blood cancers, like MM, we know average hospital stays are long, relapse is currently inevitable, and valuable free time often becomes time spent waiting – for an update, an appointment, the next treatment, and ultimately, for relapse. Research has told us that during treatment patients often stop spending time on hobbies, despite evidence suggesting treatment outcomes, mental health and general well-being can be improved if they engage in both new and familiar activities.
“The Janssen Time Keeper will be a useful tool for Myeloma patients; in fact, all patiemts undergoing chemotherapy would benefit from it, says Dr Lucille Singh, Clinical Haematologist at Alberts Cellular Therapy. “The hope of most cancer treatments is that it gives patients more time. Ensuring that the time one has is spent in quality and meaningful pursuits becomes even more important for cancer patients. I think this tool, if used appropriately, can be useful for patients on their treatment journey and beyond.”
Says Francisco Plaza, the Managing Director of Janssen South Africa, “We are thrilled with the initial feedback on this app, and it gives us enormous pleasure to know that patients are able to utilise it to bring some normalcy to their lives. Whilst we constantly strive to make medical advancements on this and other fronts, it’s important to take a holistic view of patient care. Employing current technology that enables patients manage their symptoms, is a very powerful tool in our armory.”
Information on the Time Keeper app can be found at: https://www.janssenwithme.co.za/en-za/timekeeper
Image Courtesy: Supplied