Northern Lights: Being An Efficient Patient
As many of you know, I have been dealing with multiple myeloma for almost a decade now. One thing I've learned over the years is that receiving medical care as an outpatient can be really time consuming! Fortunately, I've also learned a bit about how to save time at my cancer center, and I thought I'd share some of my learnings.
When I first started to go for appointments, blood draws, or treatment at my local cancer center, I was on a steep learning curve. I did not know my way around at all. A friendly volunteer, who was also our next door neighbor and a cancer patient himself, gave my husband and me a tour through the complex, which is attached to the largest hospital in southern Alberta.
Since then, I can say that I have been in many departments of the cancer center, including the outpatient and inpatient bone marrow transplant units, the infusion center, the radiation center, and of course the appointment rooms and the lab.
There is also a pharmacy at the cancer center from which I pick up my prescriptions for my treatments, both for my multiple myeloma and for my breast cancer.
In order to manage my time most efficiently, I try to time the pickup of my prescriptions at the cancer center pharmacy so they coincide with days when I get my regular blood draws or have appointments at the center.
The breast cancer medicine anastrozole, which I’m currently taking, is given in a three-month supply. I can phone into the pharmacy and arrange to pick it up when I am at the cancer center.
Revlimid (lenalidomide), which I have been taking off and on over the past years, is dispensed by the hospital pharmacy also, but can also be delivered to a local pharmacy for pick up. In advance of getting the Revlimid, I have blood draws done which are assessed by my doctor to ensure my blood counts are high enough to continue the treatment.
Probably most long-time patients will have a 'standing order' at their cancer center lab to expedite blood draws. I need to get five vials at each draw, and my requisition is on the computer at the lab. I think that this only works at the lab I go to at the cancer center, which is fine with me since that is a convenient location for me to go to. Some of the myeloma-related tests, such as the serum protein electrophoresis (SPEP) and immunofixation electrophoresis (IFE), are not listed at regular city laboratories, where you can make appointments online for various other tests.
At the cancer center lab, they have a system in place where patients take a number and wait to be served. I have found that mid-day or late afternoon are the quietest times to go there. I try to get my labs done a few days ahead of my appointment with my myeloma specialist so that I have the results available at my appointment. We do not have a system here where patients can access their results online. I need to call to get the results from an oncology nurse if I do not have a doctor’s appointment that month.
Since there are forms to fill out before every appointment, I find it is a good idea to arrive about 15 minutes early.
Parking can be a problem too. If one is mobile, walking in from a nearby location, or taking public transit, may help to solve the headaches of finding a parking spot. Because both my husband and I like to walk and get some exercise, when the weather is fine, we park in a nearby park, walk on a footbridge across a river, and climb up on a foot path to the hospital. That is about 2 miles (3.2 km) round trip, and we get a scenic walk before our appointments. It is calming to be outdoors in nature, and the views are great across the Bow River valley.
If I arrive early, I may get into an appointment early too, due to scheduling being an inexact science. If I have to wait over my appointment time, I can reflect on the fact that some patients need extra time too. I take my knitting or a book to read to stay calm in the waiting room before an appointment. I could also watch a news feed on a TV there, but sometimes the news is not very calming! My husband Dilip usually joins me for my appointments with the oncologist, but may arrive separately.
Occasionally my husband and I will overlap and both have medical appointments or blood draws on the same day, so we try to group those together so that we are not duplicating trips.
So at the beginning of each month, I look at my day timer and see what medical appointments or tests need to be attended to. I really try to group these items so that we are not making unnecessary trips to the various places that have become quite familiar to us over the last nine years.
One nice aspect to attending to all of these medical matters is that we invariably encounter concerned staff members who are very positive and helpful to us both. My husband is not a cancer patient, but he and I are both older now, so he has health concerns of his own.
Any time saved from the world of tests and treatments is time we can use for other work, play, and being with our family!
Do you have any pointers as to how to manage your time, as a patient or caregiver, so that you have more free time for yourself?
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The quotation for this month is from Menachem Mendel Schneerson (1902-1994), an American Orthodox rabbi born in the Russian Empire, who said: "This is the key to time management - to see the value of every moment."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
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- Northern Lights: An Update On My Treatment With Darzalex, Revlimid, And Dexamethasone
- Northern Lights: Trying To Make Plans In Advance
- Northern Lights: Having A PET/CT Scan
- Northern Lights: Celebrating A Decade Since Diagnosis
Thank you, Nancy. It is always nice to get pointers from the veterans of the myeloma journey. You are right on about trying to schedule appointments and prescription pickups around the same time. We try to do that too. I found it interesting that you are able to get your Revlimid at the pharmacy. We must have it delivered to the house, which might sound better, but is frequently problematic due to weather delays and uncertain delivery times. We are able to get my husband’s lab results online but usually not before his appointments. We usually ask the nurse or PA for a copy of the lab results so we have them in hand when talking to the myeloma specialist.
Thanks for all the tips and continuing to share your stories and experiences.
Aloha Nancy,
One of the best words of advice that I ever received was from my primary care physician (and friend) when I was first diagnosed in 2012.
She told me to look at my treatment as a part-time job. It's something that you don't really want to do, but you just have to. Just a like a job, some days will be better than others, but it will always take a fair amount of time.
I have always kept that in mind while waiting in line to get into the parking garage, lab, doctor's office, pharmacy etc. It's all just part of the "job."
Thank you for sharing your insights!
Tom
Thanks for your comments, Patty and Tom!
Patty, our hospital pharmacy will send the prescription to another pharmacy in the city if that is needed, and I think that arrangements can be made to courier it to a patient if it isn't possible for them to come to a pharmacy. Otherwise, I find many similarities in treatment logistics between our two countries. I also ask for a printout of my tests, so we can compare them to the previous ones, and also just to check on how everything is going.
Aloha, Tom! I often think of the trips we have taken to beautiful Hawaii, and hope you are well. Yes, it is like a part time job, at best, to be a patient. I am so grateful to have the cancer centre near to us, since it has become a place I have spent a lot of time at. I recognize a lot of the staff there by now, which is nice, so I have a sense of belonging. I no longer pinch myself and think 'What am I doing here?' as I used to do.
Nancy, you always capture the experience of being a myeloma patient in such a way that so any of us can relate. I haven been in treatment full time since my diagnosis in 2009, with the exception of being hospitalized this past year when it was withheld for six weeks. My numbers went way up when I resumed but have been on the new regimen of Kyprolis and dexamethasone for nearly two cycles. This week I received the wonderful news that I am responding in a positive way. My IgG numbers have gone down nearly 500 points. While I realize this progress must be maintained, I am so thankful that I am responding, and the side effects have not been bad. The best news is that I no longer have the daylong time at the cancer center that I had on Darzalex. Today my treatment last 60 minutes, and my husband could wait and take me home.
Thanks, Joan, and it is nice to hear from you, another decades long patient! I never thought I would make it this far, back in 2009, but as you have experienced, there are newer drugs available now. I am glad to hear that you are doing well on Kyprolis plus dex. Hopefully this good trend will continue. It's nice that the Kyprolis treatments are not as time consuming as the Darzalex treatments were.
Hello Nancy, I always enjoy reading your column. Your journey with myeloma has been very much like mine, as far as the drugs used and the treatments. I live in Hamilton, Ontario, and I was diagnosed in 2009 with MGUS, and had my stem cell transplant in 2012. I have been in remission, but last month my M protein has showed up again at 3. So I am at the watchful waiting period. I will be back to the clinic on April 1st for my blood work. All the best in health and getting through this cold snowy winter! Diana.
Thanks so much, Diana! It has been a really cold winter, and in Ontario I think you got heaps of snow too. Here when it is really cold and it snows, it's a dry snow! We have one of our wonderful 'chinooks' right now, and I am so grateful that it's sunny and -1C! Yesterday morning at 8 a.m. it was -27! The weather can change here really rapidly.
I am glad to hear that you are still in remission since 2012. That is really remarkable! My M protein is similar to yours also. I am not sure what will come next for me in terms of treatment, but there are more drugs available now.
These are great tips, Nancy. I’m on a clinical trial and it is time consuming. I’ve learned how to become more efficient with my time. During the five-hour infusion I often catch up on emails, make appointments, read, etc. My husband drops me off at the cancer center and then parks the car. This really helps. Of course, it’s always good to see friends and “catch up” as we wait for appointments. Thanks again, Nancy!
Thanks, Sue! It sounds like you are already very organized but am glad that you enjoyed my column. Good luck with the clinical trial. Five hours does sound like a long time for an infusion, so it's good that you take things with you to work on, or read. Hope you are coping well with our long winter this year!