Living For Lamingtons: I’m Very Fortunate
Ever since I was diagnosed with multiple myeloma, I have found that I’ve sort of redefined the feeling of being fortunate.
If you are going to get multiple myeloma, then I have been fortunate. I have had excellent treatment and excellent support. I had a good family, a fine education, a happy marriage, sufficient money, and so on. So, when this unfortunate diagnosis came, I was in a great position to get superb care.
When I was diagnosed, I was in Singapore and fortunate to be treated by a fantastic doctor and his delightful team. They have made a pretty grim situation as good as it could possibly be for both myself and my husband, Graham.
Despite the fact that I was in very good hands, I can’t say that I felt particularly fortunate when I realized how much damage the multiple myeloma had done to my bones. I hobbled about the hospital wondering if my hip would support my body. Would I ever recover enough to allow me to do all the things I loved again?
To our relief, we discovered that the particular version of multiple myeloma I have is not in the high-risk category. I felt fortunate, as it may mean that I stay in remission for a longer time.
In the months that followed the diagnosis, I remained fortunate. The myeloma responded well to the treatment, and the tumor load subsided. I can’t say I felt exactly well during this period as I struggled with all the treatment side effects (pain, neuropathy, mood swings, and so on). But I still felt a whole lot better than I had prior to treatment.
The stem cell transplant went pretty well, and my stem cells took their place in the bone marrow. I don’t think, however, that ‘fortunate’ is the word I would use to describe how I felt in the days immediately after the transplant. I can still recall the day when, as I was being sick in the wash basin, I caught sight of an almost unrecognizable self in the mirror.
Now that I am in remission and have managed to return to some of the things I enjoy, I do, in earnest, feel fortunate most of the time. But I still feel very unsure of myself, and I have some tough days. I seem to get lots of infections, such as shingles and bronchitis, and I struggle to cope with some of Revlimid's side effects.
Annoying as these physiological problems are, it’s the psychological effects that get to me most. They jump out at me when I least expect them.
Just recently Graham and I were having a chat about our pensions and if it would be a good idea to pay more into the schemes. Somewhere in the middle of this conversation, it came to me that I might not live long enough to reap the benefit of the extra payments. It was a horrible thought, and I wanted it to go away. But it stayed with me and made me confront my mortality once again, whether I wanted to or not. Of course, nobody knows what lies ahead, but those of us with multiple myeloma know so many things about the disease that we might really rather not consider.
Another thing that I have noticed is that, however fortunate I might feel most of the time, I find I don’t always react well to other people telling me how lucky I am. I think they say this because I look okay again. I have had a stem cell transplant, and they imagine that all is well.
It seems that I have decided that it is okay for me to say that I have been very fortunate, but I don’t always appreciate a similar comment from other people. When I have mentioned to one or two friends that I don’t know what the future holds, a reply of “No one knows what the future holds,” while basically true, feels like belittling my situation, and I get a little cross (although I think this is rather unfair of me).
Perhaps I ought to spend more time trying to explain the biology of multiple myeloma and making my own situation clearer. However, in doing so, I find that I end up feeling sorry for myself and very negative.
I don’t want to seem ungrateful for my own recovery or end up being someone who looks at life as a series of unfortunate incidents. If I told everyone the truth about how I feel sometimes, it would be a pretty sad story.
I think it is better for me to remain feeling fortunate and to continue to live with that thought to the fore. I like to feel happy with the progress I have made so far and enjoy every lamington that passes my way.
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.
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Thanks so much for this column. I have so many of the same thoughts and feelings especially when people tell me how good I look or how fortunate I am. It's good to know that I am not the only one to feel this way.
Marjorie,
You articulated a very interesting aspect of living with an incurable disease so well. My husband has non-Hodgkins lymphoma and my dear friend has been struggling with myeloma for almost one year now and has been very unwell.
For both our friends and family have been incredibly supportive. Medical treatment and care have been outstanding. We realize we are lucky. But your life changes when you have a disease for which their is no cure and it's sometimes hard to deal with comments people make. If they say how great things are (I'm speaking for my husband here, he is doing extremely well), we agree wholeheartedly. But if they take it one step further and say something like "he'll probably outlive all of us," it kind of hits me in the gut, like they are tempting fate to suggest such a thing.
For my friend who is still very sick with her myeloma, this is multiplied hundredfold. When our friends say, "oh she'll probably be able to go on a nice long trip in the fall when she finally feels better," it seems to me that they are belittling her issues. She still needs to get into remission prior to the stem cell transplant. She's a long, long way from a wonderful holiday. Nobody wants to be negative but a touch of reality is more supportive than blind optimism.
Thank you, Marjorie. Your honesty is so touching, and I'm sure it resonates with all of us. I too feel fortunate, and so even less of myself when I do feel down. If my fatigue hurts more than my pain, how can I complain? And yet it is, along with fear of the future, a distinct quality of life issue. You and all of the wonderful columnists console us again that we are not alone. And then console us again with beauty or wonder.
Wow Marjorie - we can truly identify with your sentiments. Like you we have gone through the various stages of diagnosis, treatment and prognosis and have felt fortunate that my husband's care is top notch, that our financial situation is stable and our quality of life is good. But multiple myeloma turns your life upside down and causes you to redefine what "normal" is for you and your family. I also find myself a little defensive when well meaning people talk about "being strong," "hanging in there" or "it could be worse." I want to ask them, "How do you know?" I am sorry but these people don't have a clue and unless they are willing to listen to the truth or do some reading on their own I find myself avoiding them. Keep sharing your experiences - we truly appreciate it.
Thank you, Marjorie, for saying what so many of us feel. Yes, we are fortunate to have successfully gone through treatment and now manage our myeloma, both physically and emotionally, on a daily basis. But, sometimes the raw truth just hits you....especially when other myeloma patients you've come to know have not been as fortunate. And, like you, the thing that really gets me is when I confide these feeling in others they respond by saying "Well, you could get hit by a bus tomorrow...no one knows when they're going to die." Really?? Yes, I get it, no one knows. For most people, talking about mortality is a really hard thing, whether it’s their own or someone else’s. Yet, it's hurtful when even the closest of friends won’t acknowledge your personal “reality”. So it's nice when someone recognizes that we are fragile, although we may not look it, we are scared, although we may not sound it, and we are living with a disease that may ultimately end our lives, although we will never give in.
Dear Jewell, thanks for your comments - I am glad we have been able to share these feelings and, just as you say, it is good to feel that you are not alone.
Hi Leslie, I really identify with your description of when a comment from a friend 'hits you in the gut' and makes you feel that they are tempting fate. That is a very frequent thought of mine. I wish your husband well and hope he continues to recover. I am sorry to hear that your friend, who has multiple myeloma, is struggling; indeed it is a long, tough journey. I send her my very best wishes.
Hello Hummingbird, I am so glad to hear that my column is helpful. I am sorry that you suffer fatigue and fear and I hope for some good days ahead for you. Best wishes.
Dear Patty, many thanks for your comments and for giving your own thoughts and experiences. I think you are correct, unless people are willing to try to understand, we have to avoid allowing them to upset us too much. Thankfully I find some other people do understand and those relationships tend to grow and develop.
Hi Pat, you describe the situation so well. I really agree with you about the raw truth that hits you when you hear of the plight of other patients. I certainly also feel fragile and scared but, like you, I plan to continue the fight. Good luck to you Pat.
Dear Marjorie - I really appreciated your honesty in expressing your feelings and physical responses to multiple myeloma. Because we are no longer bald, or look fragile, most people don't get the incurable part of this disease. Finding the right people to express yourself has been invaluable to me.
Dear Maureen, thanks for your comments. I hope that you continue to find the right people to talk to and that you don't suffer too many 'lost days'.
Hi Marjorie, thank you for your column, it truly struck a cord with me. I was diagnosed in April 2015 and had my stem cell transplant in November 2015. Thankfully in remission since, for which like us all I'm very grateful. I too try to be positive and hopeful most days, stick to my hospital appointments, get my monthly Zometa and live the best I can. As many have stated here, I too hear "nobody knows what's around the corner" or "you could be hit by a bus," which leaves me feeling low and lost. These remarks come from family and friends; they see me healthy, putting on a brave face but they don't know how scared I am underneath it all. I don't think people understand or know what to say. It really does hit home when you learn of someone who has lost their battle with this disease. However, at least I know that people here unfortunately do understand. Again, thank you.
Dear Geraldine, thank you for your comments. I am glad you are in remission, and I do share with you the feelings of being scared. They seem to hit you often, sometimes when you don't expect them. As you say, so many people say inappropriate things and you can only imagine that they mean well. I think 'putting on a brave face' is something that we share. Good luck, Geraldine, and thanks again for all your wise thoughts.