Living For Lamingtons: Balancing Worry And Pleasure
I am not sure if I’ve always been a worrier or not. I think my worrying has been, and maybe still is, in the normal range of worrying, but of course it is rather difficult to tell.
As I’ve mentioned before, prior to being diagnosed with multiple myeloma, there was a long period of time when I had a lot of unpleasant symptoms, including back pain, rib pain, and peripheral neuropathy, to name a few.
Doctors and other medical professionals with whom I consulted at that time told me that I should try not to worry. The suggestion was always that there was a perfectly simple, easily solvable explanation for my symptoms, or, alternatively, if I would relax and not worry, the symptoms might go away. I’m sure these comments were well meaning, and I know that worrying is not something that helps any situation, but it was simply impossible for me not to worry.
I worried, my husband worried, and my friends and family members who knew me well worried. I don’t suppose all this worrying was very productive, but it was, I feel, unavoidable.
Eventually I was diagnosed with multiple myeloma, and the worrying changed.
I can vividly remember the nurses in the ward and in the clinic telling me not to worry as they knew that my doctor would get me well again. I think this was a very comforting thing to say to me at that time. It was also backed up by the nurses telling me that my doctor always got his patients into remission. The confidence of the nurses seemed, at that time, to instill a feeling of confidence in me and a belief that I would get well again.
However, it certainly did not stop me worrying completely. I worried during the induction therapy, the stem cell collection, and the stem cell transplant itself. Again, I think this is quite natural worrying. These treatment regimens are tough going and, in my case, as in probably most cases, lots of challenging things happen as you go through them. It often seemed as if one medical problem settled just as another came into view.
Being in remission is certainly a much better place to be, but it’s not without worry either. It is still hard for me just to feel carefree, even for a while. I manage it from time to time, but worries tend to creep in.
Recently, I’ve had very bad neuropathy and, of course, it takes me back to the times in the past when the active myeloma was causing nerve damage. It seems as if this is not the case this time; it was an outbreak of shingles that caused the nerves to become so activated. I had a few very worrying weeks before my mind was put to rest.
I know that I tend to also overreact to certain aches and pains, particularly back and rib pain. When I get pain in places where I had all the bone lesions at diagnosis, and the pain is in any way similar to the pain of the past, I sort of freak out. It starts to occupy my mind in a way I just hate, but I don’t know how to stop it. I wish I could be more laid back, but it just does not seem to be possible. The myeloma worries have a way of sneaking into my thoughts.
And yet this is not the way I live the rest of my life. I don’t overworry or ruminate about other aspects of life. I tend to ‘go for it;’ I will go off and do all sorts of things and enjoy the thrill of new experiences and places. I don’t worry about things as much as maybe I ought, which can lead me into difficulties.
For example, I recently had the chance to go swimming in the sea, one of my favorite things to do. Unfortunately, I was attacked by a tentacled jellyfish and got a very bad sting. My rather strange, new immune system reacted very badly, and I had to endure a ton of medication to get this under control.
However, I would probably do a similar sort of thing again, as I am always looking for ways to be happy every day. Plus, I revel in the small pleasures of life. I don't want to be frightened to do things that make life pleasurable, but I guess it is important to get the balance right.
So my worries and my pleasures are always with me, battling for position.
I do usually try to keep mostly of my myeloma worries to myself, but it seemed okay to share them with you.
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 .
Hi Marjorie,
I read your column with interest. I, too, have myeloma, having been diagnosed back in 2011 with MGUS. “Smoldering myeloma” followed before I started treatment. In 2016 I had my stem cell transplant and have been on maintenance therapy since then.
Two of my sisters had been diagnosed with breast cancer years ago and have had their own journeys. My oldest sister passed away eight years ago, and my other sister opted for a double mastectomy and is still with us. It seems as though the entire female side of my mom’s family all suffered from some type of cancer. The men, not so much! I’m sure there is some commonality that links all of them/us. I am the only one with myeloma, lucky me!
Right from the onset, after I got over my shock and fear, I decided that I was not going to let cancer define who I was. To that end, and to avoid being labeled with “cancer,” I didn't share my diagnosis with anyone other than my husband for four years. At the end of 2015, when I had decided to have the stem cell transplant and knew I’d lose my hair, I finally got around to sharing my news with our children, family, and close friends. By then, I had researched my disease and had accepted it. My message to everyone was “Please don’t worry. I’m not worried, so don’t you be! When it’s time to worry, I’ll tell you, and we can worry together. For now, I feel great and life is good! No worries! It’s a wasted emotion.”
When I had my transplant, I have to admit that I was worried and really scared even though I knew I was in good hands. There’s something about coming face to face with one’s mortality that will shake one up! However, I survived the worst and am here to tell about it. I’ve had ups and downs like everyone has, but I choose not to worry even now. I take every day above ground as a blessing and treasure each moment I get with my loved ones. I am currently still on maintenance drugs, which are allowing me to be a “NED,” no evidence of disease. How can I not be grateful for that? Life is good.
My husband and I travel to see our family in Denver and in Minneapolis often. In October, we are going on a river cruise on the Rhine River. I refuse to let any grass grow under my feet while I still feel good. We are both seventy; times awastin’! There’s a lot of living we have yet to do!
My advice to you is: let go of your worries and concentrate on your pleasures. Don’t waste wonderful days worrying as it isn’t going to change anything. Take a deep breath and let go of whatever it is that you fear. It’ll happen, or not happen, regardless of whether you worry. I love that you are still living your life and doing fun activities like swimming in the sea! You go, Girl!
Good luck to you! Thank you for sharing your story with us. I enjoy reading about how others are coping.
Patty
Marjorie, your description of your worries going through all of the treatments you have endured seems very similar to how I have felt at times. I also had a lot of aches and back pain that was not diagnosed as myeloma for a few months. I also had neuropathy in my feet but did not recognize it as such.
I am glad you get out and swim in the ocean, but sorry to hear about the jellyfish stings! Jelly fish are becoming more widespread lately. I read a very interesting biology book called 'Spineless' written by a researcher, about those invertebrate creatures. I also went swimming in the 'Salish Sea' from a beach on Vancouver Island last week with no problems. The water was quite cold, but I am used to that, coming from a cold climate. It's always good for me to get down to the shore once or twice a year!
The worries will fade as you get further away in time from the rough patch you went through to start out with, I hope!
I think when we've had a diagnosis like this, our thoughts tend to go to the worst place whenever we have symptoms that remind us of when we were first diagnosed. Whenever I have muscle spasms, back pain of some sort, or pain pretty much anywhere else in my body, I start thinking, "I'm relapsing." It's so hard not to think that, but I am thankful for my doctor and his wisdom in treating me this far. And God has been so gracious in granting me 10 1/2 years past diagnosis when I was in such a bad place at diagnosis. We just keep on keepin' on and pray for the researchers! Take care.
Marjorie, I so enjoy your writing, and this is the place to share your worries, because we all have these same worries of relapsing and bone pain. I am a fellow Brit and living in Canada, and my husband and I are leaving in a week for a month in England. I have been in remission since my transplant, for six years, and my visit to oncology last week for my blood work before my travels was a bit of a worry, because three of my blood counts were flagged as high. So you see we all worry about the changes in our health, but we just have to push on and enjoy our pleasures like Patty says. I was back for more blood work and my o has given me the OK to travel, so I have put that worry behind me. Take care
Dear Patty, many thanks for your response to my column. What a tough time you and your family have had. I am very impressed by your great attitude which is inspiring. I particularly like your comment, 'concentrate on the pleasures', it is a great mantra! Wishing you continued 'NED' and every best wish.
Hi Nancy, thanks for your comment and good wishes. It is nice to think of you having a great swim in the ocean - please avoid the spineless creatures!
Dear Susan, many thanks for your comment. I am so pleased to hear of how long you have been in remission and hope that you continue to keep well. Trying not to see every ache and pain as part of a possible remission is hard but as you say we keep on 'praying for the research'!
Hi Diana, delighted to hear that you have the okay to travel and I hope that you have a great trip. Thanks for your nice comments about my writing and your good wishes. Best wishes to you and your husband.
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