Living For Lamingtons: Making Rules To Cope
I’m not normally a person for rules, but all that changed in June 2015 when I found myself lying in a hospital bed in Singapore. At age 57, I had just been diagnosed with multiple myeloma, and I was in a bit of a sorry state, to put it mildly.
It is hard to recall all the things that seemed to be wrong with me at the time – fever, infections, broken bones, severe backache, a hip that would no longer support my body, pleural effusion, low blood oxygen levels, anemia, and high blood calcium levels, to name a few.
It had taken months to reach this point and, in some ways, there was a sense of relief to finally know what was wrong with me. My husband Graham and I listened carefully when the doctor shared the diagnosis and the initial treatment plan with us.
The doctor wanted to hit the multiple myeloma as hard and as fast as possible, which would hopefully reduce the massive tumor load. However, the infections had to subside before treatment could start.
We knew we had a battle ahead of us.
In the weeks that followed, Graham quickly became knowledgeable about multiple myeloma and the treatments that were available. He was also in charge of all the research and all the questions for the medical team.
I was just struggling with my body and trying to keep my head together. I was in charge of the day-to-day task of trying to get well. Maybe this sounds crazy, but somehow I didn’t even have the strength to do any Internet searches. I was too frightened, and I didn’t feel able to accumulate the knowledge needed to understand what lay ahead.
I was so lucky to have Graham to be there for me. It was such a confusing and tough time. As I write these lines, I find myself in tears thinking of all the people who are facing the same situation right now, some of whom might not have a ‘Graham’ by their side to share the load.
It was around this early stage that my rules on how to get through this period of my life began to emerge. I wonder if I was perhaps just trying to create some sort of structure for myself. I was used to being busy with work and all the things that go together to create a ‘normal’ life, and suddenly that had all disappeared.
So the following rules became my sort of internal set of guidelines:
- Do exactly what the doctor and all the nursing staff tell you to do
- Make as little fuss as possible
- Look forward and not back.
As I waivered each day, I went back to these rules and re-set myself on track.
The first rule, “Do exactly what the doctor and all the nursing staff tell you to do,” was the easiest to keep. The medical team had so much experience with multiple myeloma and with patients in my position that it would have been madness not to do what they suggested.
Consequently, I took my medicine as instructed (even the liquid potassium!), sat up in bed when I was desperate to lie down, called the nurse every time I wanted to go to the loo (I really hated that), reported – endlessly – on everything that went into and out of my body each day, and ate three meals a day.
On a lighter note, one nurse said to me “No matter how you feel, try to get up and have a shower each day; it will make you feel so much better.” It was good advice. Having a shower did make me feel better, although it seemed like a major achievement some days.
The second rule, “Make as little fuss as possible,” was sometimes quite a challenge. When the doctor arrived in my room, he would ask me how I was. My natural inclination was to say fine because I didn’t want to make a big fuss about me. However, this was clearly a somewhat ridiculous answer. I hated going through lists of all the things that didn’t seem right, but I knew I had to tell him.
Then there were all the other small things that were more upsetting and annoying. Those were the things I tried to make less of. Yet I sometimes felt myself cracking inside. I am British. I like tea in the morning. I like hot tea in the morning. I like a little milk in my tea. And I want to drink the tea in a non-plastic cup. Was this really too much to ask?
After days and days of requests, the lukewarm brew remained almost undrinkable. Should I complain, or could I just learn to leave it be and move on?
I moved on.
The third rule, “Look forward and not back,” was also hard to follow at times. As many of you may have done, I asked myself questions about my diagnosis: Why had I become so ill before I was diagnosed? Despite all my medical visits in Singapore and the UK, why had this condition been missed?
I realized pretty quickly, however, that asking these kinds of questions was not helpful to me and did not help me come to terms with the situation I was in. So I tried to keep looking forward.
Initially the things to look forward to were simple. I might be able to go back home to our apartment soon (I can look forward to a nice hot cup of tea!). Maybe quite soon I might be able to go to a coffee shop and have a cappuccino and a croissant and be a bit of a normal person again. Then, in time, I moved to looking forward to much more active things, such as a walk in the Botanical Gardens and a visit back to my home in Scotland. Looking forward helped a lot and I could often focus on better times ahead.
On balance, I feel that I mostly followed my rules quite well but, I guess I would have to check with other people to get a true report on my compliance!
What followed this initial period was three months of induction therapy with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron), a stem cell transplant followed by a horrible period of engraftment syndrome, and now maintenance therapy with Revlimid. It sounds simple but, of course, there are many other stories to tell that I will return to in future columns.
I am delighted to say that I am currently in remission. My three rules seem pretty much business as usual now, although they have evolved slightly. I still take the meds, and I still try to ignore the side effects, but I can look forward to more exciting things, such as an eight-day walking holiday in Australia.
Of course even better might be a post maintenance period when I can maybe enjoy a bit of real rule breaking once again!
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As this is my first column for The Beacon, it seems an appropriate time to explain the title of my column, “Living For Lamingtons.”
Once I was beginning to recover from all the myeloma treatment, I started to yearn for the freedom to do all the things I love to do. This includes going walking in Australia, skipping about, and eating lamingtons (lots of them). Lamingtons, for the uninitiated, are Australian sponge and coconut cakes. I associate eating lamingtons with being well and happy, and looking forward to the simple pleasures of times ahead.
Marjorie Smith is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. Her column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Welcome to the Beacon, Marjorie! It sounds like you have been through a real ordeal with your myeloma problems, but also that you got very good medical treatment. It is wonderful that you have such a supportive spouse, and I hope you enjoy your walking trip in Australia. I don't remember eating lamingtons in Australia, but the pavlova, made with meringue and fruits, was delicious. Looking forward to reading more about your journey in future columns.
Marjorie, I sympathise with your tea problems in the hospital! When I was in hospital for my stem cell transplant, they were somehow convinced that tea could harbour microbes, and so wasn't safe for someone with a suppressed white cell count to drink. I tried to argue that, since tea is made with boiling water, it must be safe, but to no avail. Tea even saved Doctor Who when he was injured once, but they evidently weren't fans. So, I had absolutely no tea in hospital. The first two things I did when I got home after being discharged were: walking freely around the house, not tethered to an IV pole; drinking about five cups of tea!
What a pleasant treat to have waiting for me as I start my after supper reading. I am looking forward to the mix of southern hemisphere and British perspectives you'll be bringing to your descriptions of life with multiple myeloma!
So glad you responded well to your induction therapy, and so sorry to hear of the challenges you had with engraftment syndrome. I hope you will discuss both in future columns.
Welcome!
Thanks so much for sharing your story, Marjorie. I'm glad that the rules you made helped you to get through this difficult part of your life. I'm also very to glad that you are well enough now that you are considering breaking those rules and enjoying life again.
Welcome to the Beacon, Marjorie! I had never heard of lamingtons, so thank you for the introduction.
My husband was diagnosed a year earlier than you, so we have gone through much of what you have experienced. Once again, yours is a story of how hard it is to diagnose multiple myeloma in the early stages. Now that we have knowledge of the signs and symptoms of myeloma, it seems so obvious to us. But that is not the case for those unaware of this cancer and for the general practitioners who miss the symptoms.
I like your rules except for "making a fuss." Like your Graham, I am there for my husband and am a vocal advocate for him. Since so much has happened in multiple myeloma research these past few years, I try to be aware of the clinical trials, new treatments, and advances in understanding high-risk myeloma. When my husband's neuropathy got really bad, I asked his oncologist if he could be switched from Velcade to Kyprolis - it worked. Three months post stem cell transplant when it was time to start maintenance chemotherapy, I asked his oncologist about some of the newer monoclonal antibodies. Since my husband's myeloma is aggressive and high risk, she suggested that he go on Empliciti (elotuzumab) along with the Revlimid and dexamethasone. I do not know if this is "making a fuss," but I am trying to be an active advocate for him.
I am also a tea drinker and I can certainly sympathize with your desire to have a cuppa each morning.
Thank you Majorie and welcome to ranks of Beacon columnists. I look forward to your future writings. I absolutely agree with Rule 1, but I think we would be surprised how many people don't follow that rule.
Nancy, many thanks for your best wishes and kind comments. I am very pleased to have the chance join this community. In recent months, I have been reading many of the columns and have found them really informative and helpful. The holiday in Australia was fantastic and all the cakes lived up to their reputation!
Trevor, it is good to share comments with a tea lover. I did exactly the same as you when I was discharged - drank copious amounts of tea relishing the release from tethering! One year on I still appreciate those pleasures every morning.
Ian, thank you for your very supportive welcome. I will discuss the induction therapy and engraftment syndrome in future columns.
Melanie, thank you for your good wishes. I am still trying hard to keep to the rules but, as you say, it will be even better to break a few in the future!
Patty, I think I understand the way you have worked hard to get the very best treatment for your husband. That does not sound at all like making a fuss to me. It seems as if being aware that there are alternatives treatments which can be just as effective as the ones which were originally prescribed, is a great way forward. I hope you can find a lamington to enjoy with a cuppa some time soon!
Mark, thank you for your welcome. I enjoyed reading your first column and looking at your lovely photograph.
Marjorie,
Welcome to writing for The Beacon. I hope that your experience will be as fulfilling as mine has been. You column title immediately piqued my interest, as I attended high school in Australia and remember enjoying lamingtons, although they were a distant second to my favorite Aussie dessert, pavlova. I'm somewhat confused - do you live in Australia or Singapore?
It sounds as if you have been through quite a battle with multiple myeloma, far tougher than what I have experienced. Your three rules are solid, especially rule number one, to trust your medical team. It's something I have done from the outset and everything has worked as planned.
I look forward to reading your future columns.
I faced a delayed diagnosis myself and was diagnosed with advanced myeloma in 2010! I think that speaks to the rarity of this disease. Not really on the differential list of many doctors. I like your idea of having small rules to help you get through tough times. This makes things a little easier to break into smaller parts.
Steve - Many thanks for your welcome and already I feel the support of this community. We live in Singapore but travel for holidays to Western Australia as often as we can to enjoy the stunning scenery as well as the cakes! Having a great medical team seems to be such a vital element in the fight with myeloma. I am very glad to hear that your medical experiences have been positive.
Lys - Yes, I agree it is obviously a disease which is missed by many doctors. Being diagnosed with such advanced disease brings so many other medical issues for us to grapple with. I do hope that you have made some good progress since 2010.
Hi Marjorie, and welcome! You brought up memories, like ingurgitating (against one’s will) liquid potassium – yuck! And your story about tea reminded me that I am Italian and I like COFFEE! Give me a cappuccino in the morning, with lots of caffeine in it! Well, when I was in hospital I had a fine bone china mug in the little cabinet near the bed, and every day my husband or my sister brought me a delicious cappuccino or a thermos with coffee and milk. That is when I learned the true meaning of the word gratitude.
The only time I was not allowed to do that was after the transplant, but it did not matter, as my stomach was so upset, and the sense of taste so modified, that I doubt I would have noticed the difference between coffee and strychnine (so to say).
Hello Marjorie,
Sorry that you have had a rough beginning to this journey of multiple myeloma. I really connect with your rules. I have had this disease for 6 years, 5 years since my stem transplant. I have many opportunities to practice looking forward instead of back. Although I really work on "not making a fuss", I do believe we can be an advocate for ourselves and be kind at the same time. I do speak up regularly about my treatment and what I need to make a long visit for 5 hours tolerable. The kind part comes with thank you cards, treats, and words. I hope you will have more outpatient visits where you can bring a thermos of the tea you want.
Annamaria - I was laughing imagining you with your coffee in the hospital. It must have been a brilliant contrast to the potassium! I also remember that even the best cappuccino in the world couldn't help in the days after the transplant. I hope you enjoy a good coffee every morning now.
Maureen - Thank you for your comments. I think I understand what you mean about being an advocate for ourselves and we cannot always assume that the medical team knows how things feel from the other side of the bed. I follow your lead with the cards and gifts and that seems to bring much pleasure.