Living For Lamingtons: Walking With The Samburu
I’ve recently returned from a walking safari in northern Kenya. The words that best describe how I feel about our trip are simply: thank you, or in the Samburu language, ashe oleng.
It was an unwritten, unexpressed dream of mine for such a long time to return to this beautiful land and its people. Ever since my multiple myeloma diagnosis in 2015, I’ve almost been frightened to think that it might be possible. But it has happened, and I am so thankful.
It was very difficult to know if I would be fit enough for such a trip. Myeloma and the treatments I've received for the disease have taken their toll on my body, and I wondered if I would be taking too much of a risk to embark on a walking safari in Eastern Africa. My husband and I deliberated about it for a while, but once we had stopped to consider what we were waiting for, we went ahead and booked the trip.
We had a wonderful time. I’m sad that it’s over now, but I’m thankful and happy to look back and remember.
Northern Kenya is a land of great contrasts and of great beauty. On a walking safari, you follow ancient paths and camp by rivers and on mountains. The walking isn’t particularly strenuous but nevertheless challenging because the terrain is very rocky and uneven. I had a few slips and falls, but our lovely Samburu guides helped me and steadied my path. Their delightful caring and sharing nature helped to make it a trip to remember forever. And of course we both feel very fortunate to have done it and returned in one piece.
Since finding the Myeloma Beacon, I’ve read with admiration and amazement the various forum threads on fitness and exercise, such as 'Biking with multiple myeloma,' and the tales of incredible marathon runs and other great feats.
Since being diagnosed and treated for myeloma, I’ve become frightened to push myself physically. I’ve lost confidence in my body, and I am unsure of my ability. Sometimes I look at my bicycle and wonder if I could cycle again. The consequences of a fall are just too awful, and so the bike has remained in hibernation. Likewise, my ski boots are hidden under a bed. I think it is the memory I have of the time when my bones were so damaged that I couldn’t walk at all. Those memories serve as a sort of line that I am reluctant to cross.
So going on this safari was a big step for me, and perhaps it will lead us to further adventures. I certainly feel stronger and fitter now, so I’m asking myself again, “What am I waiting for?”
Walking with the Samburu also gives you plenty of time for reflection on other aspects of life.
In addition to its great beauty, Kenya is a country of real poverty. Even on our sanitized safari, we had a glimpse into the "other side" of Kenya. As we flew over the slums of Nairobi, I wondered what life was like for the people below me. Not for the first time, I felt simple gratitude for being born into a world where I had the chance for good treatment after I was diagnosed with multiple myeloma. I don’t imagine that a similarly good outcome would be possible for anyone who I was passing over. I’ve so many things to say thank you for. Ashe oleng, indeed.
So much to think about, so many memories from a wonderful trip.
And then we returned home and got right back to reality: It was time for my regular blood tests and a visit to my myeloma consultant. I was fortunate in that all was well with the blood results for this month, and my doctor was pleased with how things are going. Of course, it did not stop the doctor from pointing out that things would not always be like this, and that I would need treatment again at some point. So back to reality indeed!
I had spent the days leading up to my clinic appointment suffering the usual pre-visit tension and nerves. I’d certainly rather have been walking with the Samburu!
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dear Marjorie, What a wonderful column! Thank you so much for sharing with us. I am in awe of your courage and strength. I was diagnosed with multiple myeloma last year, had a stem cell transplant in October, and my husband and I decided to take the plunge and fly to London for a short trip this summer to celebrate my recovery. Like you, I felt like there is no time to wait; I will never know if I will ever feel as good as I do now, and I had a window in my maintenance infusions. We just got back a few days ago - we caught the Harry Potter plays and an RSC production of Romeo and Juliet. To me, that felt epic, and scary - so many crowds, so many times eating out, so little control over my germosphere -- so for me to hear about your walking trip to Kenya leaves me truly impressed with your courage and joie de vivre. You are an inspiration. I don't know if you felt like I did at times -- is this really worth the risk of getting sick and finding myself in a foreign (albeit English-speaking hospital.) I felt like I was dancing on that bubble the whole time, yet feeling grateful I was able to have a "normal" experience again, far from my all those painful hospital memories of the past year. Thank you again. I send you best wishes for long health and many more wonderful adventures to come, Courtenay
Congratulations on what sounds like a really great adventure. It is nice to read that you were well enough to make the trip and not have problems. That area sounds like a really nice place to walk. I am glad to hear you are doing well with your myeloma at this time. I hope for your sake it lasts a long time. Maybe you will decide to start cycling again.
Great for you. I was diagnosed in 2011, had a stem cell transplant in 2012, no maintenance (my platelets were too low), relapsed in October 2015. I had Velcade-dex from November 2015 until January 2018, started Ninlaro, Revlimid, and dex in February 2018.
I too am afraid to board my bicycle. I fell the last time I used it (only suffered a skinned knee - lucky).
After the fall, I took up walking on solid surfaces like bike paths. First with a broom handle for support. I looked a little like Moses. Next to a cane. I now can walk with the cane under my arm and only use it when the surface is uneven. I don't want to fall. I downloaded "May your walk" and "Runkeeper." I started walking a half a mile and am up to 3 1/2. I started in January. I would try to increase my distance with each walk. Some days are better than others. I live in Florida and the temperatures now are in the high 90's. Probably a little like Kenya. You started your walking there, maybe you could find a flat surface to continue. Good luck and smiles
Dear Courtenay, thank you so much for your comments which were great to read. I’m delighted that you managed to make your trip and feel ‘normal.’ I do share your fear of infections and crowded places. I have felt that way ever since I had the stem cell transplant. When I was traveling, I did wear a mask whenever I was in a crowded place and I used a lot of hand gel and wipes! However, when I was in the African bush I felt completely liberated. Being in the fresh air all day and night was lovely and the dangers were much the same for everyone. Good luck to you too, I hope you manage to enjoy some more exciting trips and that you feel well.
Hi Joyce, many thanks for your comments and good wishes. You are right it is great area to walk in and being on foot is much nicer than being on a vehicle. I certainly feel very lucky to have had this opportunity. Thanks again.
Dear JoAnn, thanks for your comments. You certainly have had a tough regimen of treatments. It’s good to read about your walks and the way that you are increasing your mileage, maybe we should both stay away from our bicycles! It was warm in Kenya but, due to the altitude, not as hot as Florida. I will certainly keep walking and I think, like you, I’m going to try to keep increasing the distance. Good luck to you, JoAnn.
Thanks for the lovely column, Marjorie. Your descriptions of Northern Kenya are very nice, and it's wonderful that the guides accompanying you on the walking safari were so helpful too.
It took me quite a while to get back on my feet again after having compression fractures, but first I started leaning on a walker, then using walking sticks. Now I am fine again for walking, but don't jog anymore or do downhill skiing. We did get snowshoes, but honestly, I just enjoy walking most of the time, even in snowy weather. I use a walking stick with a basket (like a ski pole) to help me from slipping on the ice.
I got back on my bike again too, but I don't go out too often! Best wishes in your ongoing recovery.
Marjorie,
I was diagnosed with multiple myeloma in March of 2017 and went through the initial treatment and stem cell transplant cycle shortly thereafter and found myself weak and in pain from the peripheral neuropathy from the treatment that I continue to this day. I was not content to remain weak so I began riding my bike as soon as the weather permitted. That riding has helped both my strength and my immune system to return much faster than expected, so I recommend riding most wholeheartedly for anyone who is capable of riding, no matter how short a distance.
My biggest worry was that the neuropathy would keep me from running, another part of my sport program that multiple myeloma disrupted. How could I run with painful feet? The answer was that my feet would hurt no matter what I did, they hurt at rest, they hurt walking, so okay, they will hurt when I run, so why not run. And run I did, after buying the plushest running shoes I could find, and to my surprise, the pain subsided as I went further into that first mile. I am up to 4 miles at time now, much slower than a few years ago, but my endurance and fitness is growing so the speed will eventually return.
In the end, do what you want to, love to, and what will improve your life right now. If biking will improve your life, start pedaling today! If swimming is what you love, jump in the pool and start today! Painting, pick up a brush this day! None of us, with multiple myeloma or not, are guaranteed a tomorrow, so make today the best it can be. I believe that, and every time I mash on a pedal and take a somewhat painful first step, I flip myeloma the bird and shout to that evil disease "I am alive and you will not take my joy!!!"
Dear Nancy - Thanks very much for your comments. I guess finding the right level of exercise is best. Walking seems to be a good option for most of us. Kenya was a delight for me, and I am hoping to continue to do reasonably adventurous things. Good luck with all your activities and enjoy the Canadian sunshine.
Hi Doug - Peripheral neuropathy is such a difficult condition to deal with. Like you, I have found that exercise certainly does not make it worse, and if anything, it makes it better. I often wake up with horrible peripheral neuropathy in the middle of the night, and I walk about until it subsides. I hope that you continue to be able to do the things that you love and, as you say, don’t let the disease take your joy. Best wishes to you.
What a wonderful column Marjorie! It will be an inspiration to many who hesitate to venture out now that they are living with multiple myeloma. I think it was truly brave of you and your husband to go to Kenya. Thank you for sharing some of the details of your trip.
You make an excellent point about care and treatment in countries like ours as opposed to poorer places like Kenya. I have heard that it can be difficult to get even standard care drugs like Revlimid in Third World countries. We too count our blessings that we are able to receive the necessary care and treatment to keep the myeloma in check.
Again, we applaud your bravery in venturing so far from home. I am afraid we are not that brave, yet! We have started traveling again and we take lots of precautions, such as wearing masks on plane flights, crowded tour buses, and in crowded spaces like elevators. We also started taking extra medications with us just in case.
Continue to inspire us!
Marjorie,
That is wonderful that you went to Kenya. Very good article about taking the opportunity of being at a good point in your treatment to do something really great despite multiple myeloma.
Congratulations, Marjorie, you made the trip and finished your walk. It's a great feeling of accomplishment . Well done to face it with courage. I have got back into cycling and playing some tennis with my husband , two sports I have loved. I broke my back and then was diagnosed with multiple myeloma. So it has been quite the journey for me using a walker and progressing eventually after treatment including a stem cell transplant, to getting back on my bike again. I wish you continued good health, and more adventures. We will be in England for the month of September, staying in The Lake District , so hopefully will be doing some walking in the fells. We will be staying in Lyme Regis, Dorset, after the lakes. We hope that the lovely weather that you are having there in the UK will continue for our visit. Take care, Diana
Dear Patty, thanks for your lovely comments, which were so nice for me to read. I too take a box of extra medication with me when we travel in case of some infection or other. I don’t feel brave, just sort of determined to try to make the most of this time when I am not on active treatment. I hope that you can manage some traveling together soon and that it goes well. With very best wishes to you both.
Hi Sylvia, thank you very much for your comments and good wishes. It was a great trip, and I am still enjoying thinking about it!
Dear Diana, thanks for your comments and congratulations! Your journey back to activity sounds mammoth, and I am so impressed that you have managed to get back on your feet and even play sport again. Good for you. I really hope that the weather stays fair for your visit to England. Walking in the Lake District is wonderful (even in a little rain!) and look out for fossils in the rocks around Lyme Regis. Best wishes to you.
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