Living For Lamingtons: Life On Hold
This column will be different from my previous ones. I’ve been struggling to find the right words.
I can’t pretend: I am frustrated. In fact, I’m very frustrated about the current situation. I imagine I’m not the only one, so I decided to share my thoughts here.
It seems as if, at the moment, normal life is on hold. Every day brings more terrible news about the spread of the latest coronavirus disease, or COVID-19, across the globe. Cases increase and deaths follow. It’s totally grim.
Right now I feel sad for the world, and I feel sad for myself. I feel selfish just saying that, as I don’t have to go out to work in a hospital or a care home. I don’t have to meet this virus first hand. I only have to stay in my home in Scotland and try to stay safe.
People say that we just have to be patient. But I am not patient. People say that we will have a vaccine within 18 months. 18 months! You might as well say 18 years as far as I am concerned.
I want to do things right now. I only have now, because I am in remission. For me, every moment counts. I had a blood test a few weeks ago, and I heard those lovely words: "No M-spike." I rejoiced, as did my husband. Our life can often seem so controlled by the tiny “No” and the fear of it being absent.
But right now there is something else controlling my life: COVID-19.
We were due to leave last week for a fabulous adventure, but like everything else for us and for everybody else, it’s cancelled. I feel cheated, I feel sad, and I feel selfish. I know I am lucky, and I ought to feel grateful, but I don’t! I had all sorts of plans for 2020, and I fear that most will not take place.
I have read others with multiple myeloma talking about all the things they can still do, and I admire their stoicism. What they say is true, and I should be able to share the pleasure and rejoice in the positives.
I also know that I am luckier than most people reading this column. Many of you have to run the gauntlet of the hospital for tests and treatment, and so many of you will have to cope with a multitude of fears and worries made so much worse by this virus.
It certainly is not an understatement to say that I’m finding it hard to be positive at the moment, but I am nevertheless trying. I have always tried to look forward and take the best of things that come my way. I realize that feeling so sad and sorry for myself isn’t a good place to be.
So every day I try to find things to do that remove me from the news and the shocking images from around the world.
My latest activity has been to make mystery seed boxes for local children. I make a little box and put in tiny packages of “mystery” seeds. I enclose everything they need, except water, to set up their mystery experiment and provide detailed instructions. The children and the parents seem delighted, and the activity helps me to drift to a better place.
I would also like to plan some “when it’s over” treats for myself, but I am having difficulty with the seemingly endless predictions of the pandemic. In addition, it seems almost disrespectful to think of a vacation when so many people are struggling.
Perhaps some of you, my readers, have some suggestions or tips for good ways to come to grips with life at this time.
In the meantime, I send my very best wishes to you and I wish you good luck in the weeks ahead.
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 .
Marjorie,
We all have had to put plans and vacations on hold. My sister-in-law had a big family get together planned. She and her brother both bought retirement houses and boats on one of the picturesque lakes in Eastern Tennessee. Big plans for a week of boating, fishing, swimming, and just getting together with the extended family that are scattered all over the US. That has been pushed from July to hopefully next year. This was also supposed to be my 50th high school reunion in Ohio in late June. I was looking forward to flying north from Dallas and attend and spend a few extra days visiting old friends I had not seen in decades. That has also been scrapped and may be re-scheduled for the fall or pushed to next year. Also scrapped are a number bike rallies I was intending on doing, and finally my church choir that I sing in is suspended.
What I have found is finding more local things to do. Discover what you can walk and hike to that is local. Perhaps do some research and find an old Scottish land mark or structure to visit if you are into that type of thing. If it's scenery, I am sure the Scottish highlands have plenty of awesome views. It's all about thinking outside of the box. Trying something new and different that does not necessitate travel or big groups.
Good luck to you on your endeavors.
My thoughts exactly. We live on borrowed time that could end any moment. This was also supposed to be my big year of celebrating remission, but those plans have been canceled. I realize that’s selfish, but it’s also honest. And yes, we will do what we can to live well. We practice that every day since our myeloma diagnosis. But now that the virus is here, I have to do it without my family.
Dear Marjorie, Thanks for your realistic column. I hope that being able to express yourself on this is helpful too. Congratulations on being in remission, and I hope it lasts a long time!
How nice to make boxes of seeds for children to plant, which they will like to do. I find that the large seeds, such as nasturtiums, work the best. Last year we planted some seeds and cosmos in stripes of pink worked well. I was quite surprised at that.
Hope you enjoy your time at home even though it wasn't what you had planned.
Marjorie, you are not alone in feeling so frustrated and cheated. I'm so very sorry about the vacation you had planned. I think about that for myself. Fortunately, my husband and I are planning a big trip for the fall of 2021 and, while I'm thankful it wasn't on the books for this coming fall, who knows what next fall may bring?? But I am one of those vaccine lovers and am thrilled that one is being researched for this! I still have concerns about the measles outbreak, for which that vaccine I cannot get a booster, as it is live. I'm thinking I will "live on the edge" and plan for the trip anyway, measles or no measles? Who knows? We cancer patients live day to day, and dangerously, I might add. I hope and pray a vaccine can be developed sooner rather than later and that you are experiencing the "No M-spike" situation so you and your husband can go on that fabulous adventure at a later date! Take care.
I believe everyone to some degree is feeling afraid, frustrated, and perhaps hopeless at this time. But now more than ever we must remain positive and focus on the good things in our lives and what good will come out of this situation. A positive attitude helps keep our mental health strong and going in the right direction. Think about the good things in your lives and share something with others re: baking, phone calls, Facetime, boxes of seeds, written notes.
My husband and I are working on house projects, which gives a sense of accomplishment, doing Facetime with friends and family, baking, and doing a "drive by, drop off" at people's homes, as well as walks outside and away from people. On our drive-bys, we share a visit from the car, staying more than six feet away.
We too had an Alaskan vacation planned with dear friends that has been cancelled, and I too have myeloma and am in treatment for relapse. We cannot visit my 97-year-old mother who is in assisted living, but these things pale in comparison to the alternative: getting the virus, or losing a business or a job.
I strongly believe that things happen for a reason, and we must wait this out to see what is on the other side. Many blessings to everyone and stay positive!
Dear Marjorie. Thank you for sharing your honest thoughts and feelings on life during the COVID-19 crisis. It is tough on everybody. Fortunately, we live in the mountains and only have one case here, but we have family in several hotspots. We can’t see them, and they can’t come here where it is safer. We lost our last living uncle in New York where he was in a care center that had infections. My cousins never got to see him or say good bye. Now they can’t even bury him. Everyone in my family knows someone who has had COVID-19. One of our sons has it. My sister’s acquaintance died of it. One of my former colleagues is hospitalized with it. If your area is not really affected by COVID-19, count your blessings. We too had to cancel travel plans, but after living with myeloma for almost 6 years, canceling travel plans is nothing new. We can just hope and pray that they can develop therapeutics for treating the virus as we wait for a vaccine.
Majorie, it's like you read my mind. I feel great right now, the best I've felt in 9 years, and here I sit, home. Thank you for sharing this, and you are perfectly justified in feeling frustrated. Hang in there, you'll get there. We'll get there.
Ron - Many thanks for your comments. I’m sorry that you’ve also had to cancel so many excursions and arrangements. I admire your great attitude and love all your cycling stories. Yes, plenty of beautiful places to go in Scotland but, at the moment, we’re only permitted to venture very close to home. Best wishes to you.
Cheryll - I’m sorry that your plans have been cancelled. It’s terribly tough. Good luck to you going forward.
Nancy - Thanks, as always, for your nice comments. I hope to share some better stories with you in the future.
Susan - Tanks for your comments. Gosh, I really, really hope that your 2021 trip is trouble free. I share your wish for a vaccine and the hope that those of us with myeloma will be able to get it soon. Let’s hope for a speedy progression. Best wishes and good luck to you.
Thank you for such a wonderful and truthful column!
It is challenging when your plans are based on monthly labs, and when it's not so easy to say "We'll just reschedule our vacation until next year." If you have never been a multiple myeloma patient (or caregiver) whose plans are determined by remission vs. active cancer, it's difficult to appreciate our perspective. Thank you for putting it so well into words!
Your mystery seed box for kids is such a sweet gesture!
Thank you!
J.H. - Thanks for your comments and all your thoughts about this situation. I am sure that you are correct and that having a positive attitude is the best way forward. I am sorry to hear of your cancelled trips and wish you, and all of us, better fortune in the months ahead.
Patty - Thank you, as always, for your nice comments. It is good to share things even at the moment. I am very glad that you live in the mountains, hopefully far away from infections. My condolences for your sad loss and every best wish.
Matt - Thanks for replying to my article. I am imagining you sitting, like me, at home trying not to be grumpy! Let's hope for better days ahead.
Nicole - It was great to read your reply to my column. You are so right, we cannot just say 'never mind - next year will be fine.' The mystery boxes are going down well and I am planning further botanical challenges!
I agree with your analysis. I thought we would be the minority; looks more like the unanimous opinion.
Hello Marjorie,
Thank you for your column, and I love the mystery seed boxes. A wonderful promise of the future for the children.
For the record, I have smoldering myeloma and for the past year I have been teetering on the edge between watchful waiting and treatment. I retired in August after a 4th mastectomy revision. I figured I would just chill for a time before I needed treatment for the multipe myeloma, which has not yet occurred. I have an appointment in 2 weeks. Since my doctor is in New York City, and I am not, it is a televisit. My bloodwork was done with a send-out kit last week.
Yes, we had also had a cancelled vacation. The vacation started just when this began and immediately evaporated. Because my husband is a doctor at a couple of hospitals, he has been wearing a mask at home and we have been sleeping in separate rooms for what feels like forever, but basically once the COVID-19 was identified. We eat at the opposite ends of a dining table 6 feet apart (I measured). I probably should have lit candles since it feels so "Downton Abbey."
So grumpy and anxiety comes with the territory, certainly for me. When I begin to feel stressed, I try to look at it, identify what I am feeling (Sad? Panicked? Or whatever), acknowledge it, describe it to myself, and move on. For me, denying it or beating myself up about it just gives it greater negative power. I schedule my day to make sure that tasks don’t run on and on and to make sure there are breaks and changes in activity. Being outside helps. Also exercising, and, as someone who never did FaceTime, I am loving Zoom. Reconnected with friends from undergraduate school (way long ago).
I am very lucky. With family in New York City and Los Angeles, both hotspots, and relatives in their 90s, no one has fallen ill. Despite cases in the staff my husband works with, he has not become ill either. I don’t think life will return to what it was. We will find a new norm, hopefully a vaccine, but this event will not leave the world unchanged. I hope for all of us and our friends and families that it happens soon.
And on another note, Marjorie, whenever I see your columns I am brought back to our trip to Scotland, which included some hiking around Glen Coe. A wonderful memory.
Best wishes to you all.
Craig - Not sure to be sad or glad that we think the same way! I hope you’re coping in whatever way you can. Every best wish.
Susan - Thanks so much for your response, which I enjoyed reading. I particularly liked the image of Downton Abbey during dinner. What a crazy situation to find yourself in. It’s such a pity that we can’t plan a lovely walk in Glen Coe, but hopefully this isolation cannot last too long. I send you and your husband my very best wishes.
Hi Marjorie,
I feel your frustration as we deal with COVID-19. One of my friends shared the other day that she actually broke down and cried as she is so scared. I think all of our feelings of anxiety, fear, panic, and frustration are to be expected. We’ve never had to walk along this path previously. It’s scary!
I taught English for many years, and “The Diary of Anne Frank” was one of the literature choices we read. I can’t help but think of how much worse that 14 year old girl had it than we do. She couldn’t go outdoors and get fresh air! She had to remain quiet all day long while there were workers in the building beneath them. When I consider her isolation and compare it to mine, I shape up and am extremely grateful! Do I like being quarantined? Absolutely not! But it could be worse!
I’m glad that I am retired and not worrying about my job! Now that spring is trying to arrive in Minnesota, I love putzing around in my flower beds preparing them for when I can plant. I love to go hiking. I love to read and knit. I’ve quilted myself a lovely table runner from scraps of fabric I found. I love to cook and bake and share my baking with others by leaving packages on their front steps. Some of us have taken to making face masks for the two hospitals in Duluth for the various staff workers and patients. It feels good to be giving back.
I absolutely love your idea of the seed boxes! They are filled with hope and new growth! Our neighborhood in our little community all put stuffed bears in our windows facing the street and sidewalks. Parents take their little kids on bear hunts every day and count how many bears they can find. It has been a huge success and loads of fun! My heart goes out to the current seniors at the various high schools who will be deprived of their proms and baccalaureates and graduation ceremonies. They won’t get to say good bye to their friends before they are off to whatever the next step in their life’s journey will be next fall. That is so tragic!
This pandemic has really opened our eyes to how much we took for granted. The entire world will have a new normal at the end of this. Perhaps it will be a kinder and gentler normal than we had. When I get frustrated, I try to remember that this, too, shall pass. It’s hard, but we can do hard! Hang in there! We’ve got this!
Patty
Dear Patty, Thanks so much for your response to my column. It’s good to read about your reaction to this pandemic and I appreciate all your comments. I totally agree with what you say about the youngsters and the seniors who are disproportionately affected by the pandemic. It’s a tough time for so many. I am glad that you like my seed box idea. I’m actually quite overwhelmed with ‘orders’ at the moment. Best wishes and good luck to you.