Living For Lamingtons: The Big Things And The Small Things
Having multiple myeloma is quite a big thing. Being diagnosed with the disease certainly is one of the biggest things that has happened to me. It’s a big deal that we sufferers, and our loved ones, live with every day.
For me, multiple myeloma often permeates my thoughts even when I try to drive it away. Sometimes I’m having a chat with friends, and I’m feeling much like everyone else, but then The Big Thing gets in the way. I find that I can get upset about the way in which my life has changed because of myeloma, or I find that I just have to openly acknowledge that my options and choices are limited by my disease.
Despite that, I think I’ve more or less gotten used to multiple myeloma being in my life and, at the moment, it’s sort of settled in its place because I’m currently in remission. I’ve often heard people who write on The Beacon say that life will never be the same again, and I agree with that sentiment. Having multiple myeloma is a big thing which we are saddled with forever.
However, having myeloma also seems to have brought to the fore the importance of the small things in life. Sometimes these are good things, and sometimes they’re not so good.
There are many smaller things that appear on a more or less daily basis. Myeloma itself, and the different treatments I have had, cause all the small infections that now plague me. I often have shingles and other viral infections, and these lay me low. Just last month I had another bout of shingles, and I felt pretty awful for a few days. Once the rash appeared, I realized what was happening and took the necessary medication. I felt okay again after a while, but once the shingles had subsided, a cascade of other 'small things' followed. This included a return of the neuropathy I have suffered from for many years, even before I was diagnosed. The small things can add up, and then they don't feel so small!
Hospital visits and blood tests are other myeloma-related things that are ongoing in my life. I have blood tests every two months at the hospital when I go to see my consultant. The blood tests themselves are, of course, nothing to worry about. However, the waiting and the tension associated with trying to find out the results is not much fun. I find the cycle of waiting and worrying tiresome, and I'd love to escape it. It might appear to be a small, but it doesn't always feel that way. Sometimes I seem to be perfectly calm and in control about this routine, and other times I become very nervous and anxious. From time to time, I even find that the pre-diagnosis nightmares return. I cannot really identify what makes me react so differently to the same small things.
But other small things give me great pleasure. Somehow I’ve developed the ability to make the most of the many smallest, pleasurable things that happen. I’ve found that I now focus much more on today. So, for example, I get enormous pleasure from seeing a plant growing in the garden, listening to a bird singing, having a walk with a friend, or just any tiny trip or treat. Just this week, I shared a delicious cake with a friend – a small event, but a very big pleasure.
Sometimes I listen to people complaining or arguing about what seems to me to be nothing important, and I feel sad for them, because I feel they are wasting time on such small things. I really try not to do that anymore.
Sadly, The Big Thing sits behind me far too often. Nowadays, the worry of a potential relapse is a ‘big thing’ that sneaks into my mind frequently. However, I’m trying to live in the now and keep that worry in the back oven for as long as possible.
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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Ms. Smith's article is spot on. I also suffer with multiple myeloma and all the things that go with it. I have peripheral neuropathy really bad. It's an everyday battle. And have tried everything to get some relief and nothing works. I just ask God to help me through each day.
Marjorie, I'm so sorry you've had several bouts with shingles. While I had chicken pox as a child, I have not, thank the Lord, had shingles yet. I hear they're horribly painful. On the other hand, I'm glad you have respites from neuropathy. That is something I deal with on a daily basis pretty much. There are some reprieves when I'm on my "off weeks" from Revlimid, but it usually feels worse once I start my maintenance cycle again. We're all different in how we respond to and tolerate medications! Stay well, friend, and keep up the good work. I enjoy reading your columns.
Dear Tony - Thank you for your comment. I am so sorry to hear how bad your neuropathy is and how much you suffer. I also find it very difficult to get relief. I recently had some acupuncture and I felt that it helped. You have probably tried that already, but if not, I guess it might be worth trying. I will think of you and I send you every best wish.
Hello Susan - Thanks so much for your comments and kind wishes. You are certainly correct about all the different reactions which we have to both the myeloma and the treatment. I am sorry to hear about your neuropathy. I think we might do anything so get some reprieve! I am with you in spirit and send you my best wishes.
Spot on! I'm also in remission and occasionally the small things get me like neuropathy or pain from nerve damage. But the main thing is feeling that I can't plan very far ahead, for fear that the myeloma will return and disable me.
Dear Mike, thanks for your comment. I’m sorry to hear about your neuropathy and nerve pain. Not being able to happily plan ahead is so tiresome, I often feel almost as I’m tempting fate when I plan a holiday. I wish you well and hope that your myeloma stays quiet.
Hi Marjorie,
I read articles and comments from people with myeloma so I get a 'read' as to what others go through. I feel very fortunate. I was always sick before I was diagnosed. Now that I have had treatment and am on maintenance therapy, I am not as ill. I do have a lot of fatigue, neuropathy, and chemo brain. I have learned to not overdo it (most of the time). I had to leave my job before my stem cell transplant and am unable to go back. I feel fortunate that I have the financial resources that enable me to do this without anxiety and ruin. My husband is 11 years older than me, so it works out that we can spend more time together now that he is retired.
I try to look at all the positive things in my life rather than dwell on the unforeseen things or things I cannot do anymore. I wish all myeloma warriors the best.
Dear Patty, many thanks for your comment. I admire all the very positive ways in which you can see your life. I hope the fatigue, neuropathy and chemo brain subside a little in time. Best wishes to you and your husband and enjoy your retirement time together.
Dear Marjorie,
I totally understand your feelings. Sometimes I can carry on as the old normal, then the multiple myeloma thought comes back into my mind. Once or twice I have even suffered panic attacks because of the fear of relapse. But then I give myself a good talking to and tell myself that worrying today is not going to change anything and that I am taking away the pleasures of the here and now. So we continue and say our thanks with each passing day. Nice article.
Dear Susan,
Thanks so much for your comment. I smiled as I read, ‘I give myself a good talking to.’ That's just exactly what I do in those panicky moments. I wish you well and many days of pleasure.