1. Don’t panic.  Although there is,as yet,no cure, myeloma is one of the more manageable cancers.  There are many treatment options.
2. The patient will be understandably upset and often overwhelmed on their myeloma journey.  Ideally there should be one designated caregiver who goes with the patient to all doctor consultations.  If not one person, then a team of family or friends.
3. Myeloma treatment is very complex. During visits, take notes.  It is very easy to lose track of things.  Set up a pillbox that includes all medications.  That will help.
4. Prepare for doctor visits by bringing a list of questions or concerns.  Your time with them is precious.  Keep an up to date list or spreadsheet of all medications.  Bring it to your appointment and have a copy ready if you have to go to the hospital.
5. Your general practitioner is an essential part of their health care.  In my experience, it is best that the caregiver attends all these visits as well.
6. Have a thermometer at the ready. Since myeloma suppresses the immune system, be very cautious about the onset of infections.  If a patient complains about chills, take the temperature.  If it goes above 38C, it is time to go to hospital.  If patient is too weak, call 911.  Many myeloma patients die of infections rather than the disease itself.
7. Join a supportive community. Support groups meet on a regular basis providing you with many opportunities to expand your knowledge about treatment options and the experiences of other patients and caregivers.  Other sharing a similar experience will give you hope and empowerment.
8. Although stem cell transplants are risky, it is offered, seriously consider doing the procedure.  It is effective in knocking back myeloma, but do not expect a cure.
9. You will encounter many knowledgeable, caring and gifted health professionals.  They deserve your respect, gratitude and patience.  Let them know how you feel.
10. Cherish every day.  Even the brutal ones.   Cancer is a journey that can take you deeper into the mysteries of love.

 

John Podgorski, caregiver to Irene Podgorski