Be the Empowered Patient

Getting a cancer diagnosis is not easy…for the patient or his/her loved ones. Here are a few tips that might be useful. Many you have heard before. We want to relieve some of your stress. As a rare blood cancer, Myeloma treatment needs specialists. Please locate specialists as soon as you can. Support Groups can help you with much of this.

  • Always take someone with you to your appointments. Four ears are better than two – two heads are better than one.
  • Get a notebook – or two. You will need a three ring binder at home for your test results, financial upkeep, myeloma resources, etc. The other might be a spiral notebook that you can take with you to each appointment.
  • For each appointment, write down no fewer than three questions to ask your provider – about symptoms, prescriptions, side effects, etc. If you have any concerns between appointments (e.g., side effects), write them down and discuss at your next appointments. The doctor will want to know when symptoms occur (night/morning; before/after meals), and frequency of symptoms – just once, daily, number of times each day.
  • Know your numbers! – Ask for a printout of your results with the normal ranges at each appointment. Review yourself, and ask the provider what you should be looking for.
  • Talk to everyone on your team. Every person has a different communication style. You might understand or connect with one person more than another.
  • Ask your team to create your treatment goal plan with you. What must you do to get achieve the best results. Then review with your household, and get busy.
  • You have prescriptions? What does each drug do? What are possible side effects? Can you afford prescription? Ask doctor/social worker for assistance.
  • What number/who do you call if you need someone after clinic hours.
  • Learn where to get additional help – nutrition, housing, rent, prescription, transportation. Ask – you are not the first person to need some support.
  • Not satisfied with doctor, clinic environment, treatment regimen, communication style, lack of communication – ask for second opinion. Sometimes a different perspective will help everyone involved.
  • Learn some de-stressing exercises. Learn deep breathing and progressive relaxation exercises you can do almost anywhere.
  • Finally, as soon as you can, get some physical exercise – stretching, walking, expanded lung deep breathing. You have to make adjustments for the harm the myeloma has done to your body. Eat nutritious foods – check with a nutritionist, if needed.