Living For Lamingtons: Don't Look Back
When I was diagnosed with multiple myeloma, the condition had progressed into the full-blown form of the disease. It was advanced myeloma (stage 3) that had to be treated immediately. As I've described in previous columns, I was in a bad way, with bone damage, lung damage, and biochemistry all over the place. Fortunately, I responded well to the treatment I received, and I am now in remission.
Once I returned to better health and became more knowledgeable about multiple myeloma, I could not help but wonder how life might have been had I been diagnosed earlier. In life I have always tried to avoid these sorts of internal, backwards discussions with myself, but somehow, in this instance, they crept upon me.
And it is very complicated! There is no doubt life would have been very different if I'd known earlier that I had myeloma. Would it have been better to have known about it years earlier, or was it best to find out in the way that I did? Despite how pointless I think this chat is, I do ruminate about it quite often!
If I had been diagnosed earlier, it is likely that I could have avoided some of the damage to my body. Surely if I had been diagnosed in the MGUS or smoldering myeloma stages of the disease, or even just a few months earlier, I might not have had to endure the excruciating pain that dominated my life for many months. It was an all-consuming pain that progressed each day and eventually left me unable to walk or move about normally in any way.
Without warning, the memories of that pain and that period come back to me. Sometimes it is the sight or smell of something that I encountered during that time. Just recently, it was putting a pair of boots on that I have not worn for ages. I can still remember the jolts of pain I had when walking about in them.
I imagine that if I had known that I had myeloma or its precursors, I might not have a large hole in my femur, which makes my hip joint ache. I might not have the nerve pain down my right leg, I might not have such bad neuropathy, and so on and so on.
Also, I might not have had this terrible time when I felt that I was going mad as I tried and tried to get some medical person to see that whatever was happening to me was not run of the mill. Those memories are still with me, and they make me sad.
Looking back with the other hat on (which I still try not to do), I also think what a blessing it was that we didn't know that I had MGUS or smoldering myeloma. I avoided knowing that I was in those stages and 'blissfully' continued to live my life without the shadow of myeloma.
I did have symptoms during that period, but they did not restrict my life. They just made me wonder if I was in some way unwell or imagining things. They always seemed to be, at least partly, explained by something or other. For example, I had shingles a few times, and the doctor who I saw at that time thought that some of the neuropathy symptoms I had were a result of shingles. The anemia was put down to the possibility that I might have early stages of pernicious anemia, which runs in my family. I fell once while hill walking, and it was suggested that this accounted for my rib and back pain.
Because I was unaware of what was going on inside my marrow, I just carried on with my life doing all sorts of quite dangerous but exciting things. I went walking in remote mountains in Africa, explored deserts and swamps that had malarial mosquitoes, and taught in the street schools of Jakarta.
Would I have done these things if I had known what lay ahead? I don't know.
Maybe I would have worried about the potential consequences, maybe I would have thought that I should take more care of my health, maybe I would have thought I should save up the money that I spent for my future healthcare costs. I don't know and, of course, I ought not to waste time thinking about it.
However, I often read articles and forum threads at The Myeloma Beacon from those who are going through MGUS and the smoldering phases of the disease. These people have many concerns and worries, all of which I avoided. I feel sad for them and their loved ones. They are going down the same road as me, but I was blindfolded and they are not. I avoided all those worries and concerns.
So my circle ends. As you can tell, I can see advantages and disadvantages of both situations, but deep down I know there is little point in thinking about them as “it is what it is.”
So my advice to you: Don’t look back, and make the most of your days.
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 .
Dear Marjorie,
I really enjoy reading your articles because I feel I have some things in common with you. I too lived in Singapore, but returned to the UK a few years ago now. I still consider Singapore my second home. I too think about how I would have felt if I had been diagnosed earlier. I too was stage 3, with collapsed vertebrae, fractured ribs, and multiple lesions. I am glad in a way that I didn’t go through the worrying of being diagnosed with MGUS or smouldering myeloma and lived my life without the extra stress. Granted I would not have had problems with my skeleton, but I offset this against the feeling of devastation, worry, anxiety etc. which would have pursued knowing I had precursor disease. The saying “ignorance is bliss” comes to mind. However, I too say, it is what it is, it’s done and can’t be changed. All we can do is live our life as best we can. Good article, Marjorie.
Dear Marjorie,
I love your articles. It's hard to know what to wish for, isn't it? My husband has intermediate /high-risk smoldering multiple myeloma, and we have this cloud now following us around. Waiting for the shoe to drop. We are living life to the fullest, but "the elephant in the room" sure does present some challenges for long-term planning.
Marjorie,
Like you, I had early signs of myeloma, but other factors delayed my diagnosis by at least two years.
Unlike you, I was diagnosed as Stage 3 before physical damage occurred.
The year before my diagnosis, I spent three fabulous days in the desert on my fully restored vintage motocross motorcycle, doing things many 65-year-olds can no longer do. Now, of course, I don't dare.
At first, I was very unhappy about having to give up dirt biking. But then I realized that "I got away with it" that last year because I didn't know my condition. So I no longer feel cheated.
I so much understand your "what if" musings!
Dear Susantr, yes we really do have a lot in common, I am sorry that it includes myeloma! Thanks for your comments. It is funny to think that “ignorance is bliss” but I guess in both of our situations it really was. Wishing you the very best in the future.
Hi WNW, thanks for your kind comment. I am so sorry that you and your husband have this cloud following you now. I hope that he remains smoldering for a long time and that you are able to have fun.
Dear pepperink, I am so glad that you had those desert experiences, that sounds fantastic to me. Giving up things, in my case skiing, does seem tough but, exactly like you, I often think that I 'got away with it' for many years. Sending you good wishes.
Wow, Marjorie, you sound a lot like me. Many times I have wondered what it would have been like if I had been diagnosed sooner. I think about my daughter and know for sure that I'm glad I did not get diagnosed in the early stages of my myeloma, because she wouldn't be here. I, too, think about all the roller coasters I rode and other dangerous things that could have probably paralyzed me if something snapped, specifically that tumor in my neck that I had (among many others). But here I am and doing well for several years, so I will take that and run (or walk!) with it.
Thanks so much for expressing your thoughts.
It was interesting reading your thoughts. My dad was diagnosed with Stage 3 multiple myeloma 15 years ago, aged 68. Unfortunately, he died just before Christmas, but he had so many more years than he expected. I was diagnosed with MGUS 2 years ago, and it’s hard not to look to the future and wonder what it holds. However, I see it as an advantage, as I know the smallest changes will be picked up straightaway. I also know that the medical developments around treatment are amazing. As you say, we have to make the most of every day, as none of us know what the future holds!
Dear Marjorie,
What a wonderful article, which so resonates with my journey.
Pre-diagnosis, I put my "back-pain" down to muscle strain. Now, three years after diagnosis, I now know that the nerve pain in my right leg is not due to having strained anything, and when I look back (only when I am due for my weekly Velcade and dex treatment), I realise how much I've learned about life.
Reading about myeloma members' experiences brings tremendously good energy, showing me ... That's life! Thank you.
Dear Susan, thanks so much for your comment. Yes, we do sound alike. I'm glad we've both survived more or less in one piece to share our stories. Best of luck to you.
Hi Jayne, I'm so sorry to hear of your father's death and how dreadful for you to be diagnosed with MGUS. I've always thought that myeloma doesn't run in families but your situation indicates that it does. I send you my very best wishes and hope that your MGUS always remains quiet.
Dear Leonie, thank you for your comment. Our ailments sound very similar and, like you, I often think about how much I have learned about life. I hope that your treatment is bearable and that you can enjoy the good things which come your way.
Dear Marjorie,
What an ordeal you went through. I've often felt anger/disappointment because my disease was not detected earlier before all the bone damage occurred. My plasmacytoma wasn't diagnosed for 2 years (age 73) despite my neck/shoulder pain. Finally it got so bad that an MRI was done. By that time it had spread throughout my skeletal system and I was severely anemic. Still, I was blessed as kidneys were spared and I responded quickly to treatment. Genetically my disease is not considered aggressive, and after 3 years, I am still in remission on Revlimid. I still have back pain but can cope with it.
So despite my diagnosis, I am fortunate as it could have been much worse. Thanks for sharing your story and I wish you well.
Dear Maddie, thank you for your comment. I'm sorry that you also suffered bone damage and still have pain. Like you I avoided kidney damage. Strange that makes us feel fortunate! Wishing you a long remission - best wishes.
Hello, I knew nothing about, not even the name myeloma, until September of last year after a routine blood test after I had caught scarlet fever from a work colleague. After blood tests and bone scan, nothing of concern had been detected apart from the low M-protein. It sort of been decided I have MGUS. It has been suggested that I have three monthly checks, which I am going to turn down as this wait + watch scheme is just not for me. I am no good with illness, and would rather get on with my life.
I am 63 years old, which may not be considered that old, but compared with some of my dear families members, it's a good innings! I want to ignore myeloma / MGUS and just get on with life. Let's be honest, we all have to pass on with something, sooner or later, don't we? I would prefer not to know exactly when.
Best wishes to you all
Dear Gillian, I am sorry to hear about the possible MGUS. I think you are quite right to do things as you wish and get on with your life. From my understanding most people with MGUS do not progress to myeloma so hopefully you can avoid pointless worrying. Good luck to you and every best wish.
Dear Marjorie,
My mother was detected with multiple myeloma (stage 3a) at the beginning of this year. Much like most people on this site, we had not heard of mutliple myeloma before. It came as a shock, and I am still not over it (as it has only been 2 months). My mother's bones and spine are affected, and she now wears a brace (which is disturbing her emotionally). We do not know what to expect as she is still on induction therapy. All of this frightens me a lot. Though, I have been gaining some confidence after reading about real experiences on this site. I hope and pray my mother's induction therapy works and she is able to lead a near normal life again. Good luck to everyone on this site. You folks are amazing.
Nisha
Dear Nisha, I am very sorry to hear about your Mum. I am not an expert but I think that once the induction therapy really does its job your Mum's bones may heal. My understanding is that they don't heal completely but most of the pain and instability eventually goes away. This is what happened to me although, at your Mum's stage I would never have believed it. I send you and your Mum my very best wishes - I will think of you both.
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