Living For Lamingtons: From Green Juices To Pink Bubbles
Something that has intrigued me since being diagnosed with myeloma myeloma is the rather odd things that some people say to me. I always think that their intentions must be good, but from time to time I have been upset and somewhat irritated by some comments.
One of the first such incidents I can remember is when, hearing of my misfortune, someone asked me, “Have you tried green juices?” I was not really sure what to say; neither "yes" nor "no" seemed an adequate answer. I cannot remember what I said that first time, but I do remember that I was given a long lecture about the nutritional value of green juices and all their anti-inflammatory, anti-oxidant, antibiotic, and of course anti-myeloma health benefits. I probably said that I would give them a try.
Over the years, I have been given many such tips. I’m never sure if the tipsters are suggesting that if only I had followed the green juice, coconut water, herbal drinks, and squashed dandelion leaves regimens, I could have avoided myeloma in the first place, or if the advice is intended as a recipe to prevent myeloma relapse.
People have also proposed that I ought to avoid sugar, eat only organic foods, become vegan, and so on. Strangely, so far none of the people giving this advice have ever asked me about my current diet or future dietary plans. Actually, I love fruits and vegetables, fish and lean meats, and cakes (of course!), and I have always been a fairly healthy and non-faddy eater. I cannot say that I drink green juices every day, but I certainly enjoy the odd one from time to time. I'm sure that these suggestions are all healthy things to do, but my faith when treating my multiple myeloma is more with the medications and treatments prescribed by my myeloma consultants.
On the other hand, I do think that, despite having this diagnosis, being healthy in as many other ways as possible is a good plan, particularly as I need to be in as good shape as possible to cope with a relapse.
Then there is the stream of “I know someone with myeloma and they are fine" comments. I've been told that this person did not take maintenance therapy, or completely avoided all animal fats, or had turmeric with every meal, or even took up meditation as a Buddhist monk. Again, I am never quite sure what to say. I usually say how glad I am for this person, who I do not know, and wish them well.
I cannot really be bothered explaining multiple myeloma to some people in these circumstances. I initially tried, but I didn't find that it helped them to understand, and it didn't help me to cope with their comments.
Most of my friends have tried to understand myeloma and tend to just ask me how I'm doing and wish me well. I know they feel sad for me and, I guess, I always endeavor to sound as cheerful as possible. I enjoy hearing all the news and stories from my friends and family, and I genuinely find other people's lives more interesting than mine (well the myeloma bit anyway!). I think I'm rather guilty of diverting the chat away from my situation when I feel that things are progressing in that direction.
I love it when, from time to time, I meet people who I haven't seen for a few years, and they don't know I have multiple myeloma. Recently I spoke at a meeting and met a teacher who I hadn't seen for a while, and she just said, “Hi Marje, haven't seen you for ages, you're looking great.”
Another rather tricky type of chat is when people ask me in some way or other about my prognosis. I'm often not sure what to say. I don't like saying “when” I relapse; I prefer to say “if” I relapse. But with some people, both answers lead to problems. Both can precipitate comments such as, “Oh, but nobody knows what is ahead.” This is, of course, quite true, but I think it's fair to say that the odds of a long, healthy retirement are not exactly in my favor. I know that there is no malice in these comments, but I don't react very well to them, on the inside. I think I feel that they diminish my own situation and almost suggest that I'm making a bit of a fuss about what everyone has to bear.
It is so much easier with good friends who know a bit more and just don't go there. With them, I tend to be able to enjoy the moment and to relish all the lovely things in life that I appreciate and enjoy. I'm lucky right now, and I try to get the most of every day and every experience. I've decided it's not my job to change the world, so I just try to smile and move on.
What I have discovered is that I've got a bit of advice of my own to pass on. It is my suggestion to try pink bubbles rather than green juices!
I often sit in the evening in my room with a view, and I open a little mini bottle of pink bubbly wine. I find that the glass and a half is a wonderful way to start the evening as I celebrate, with my husband or friend or a family member, the joy of being alive and well for that day.
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 .
Oh how familiar these comments are to me. There must be sooo many people out there who have had multiple myeloma for 20 years and are just fine, judging from the many people who have told me this. And if only something as simple as health drinks and vitamins would be the cure. Multiple myeloma is still a disease that most people don’t understand.
Thanks. You made my day.
Great column, Marjorie!
Friends I haven't seen for a few months will ask me in a rather intense way, 'How are you?". I appreciated their concern, but I am left wondering if I have said too much about my journeys with cancer! Thankfully I can tell them that I am doing well. The most memorable comment I got was 'It just isn't your time yet.' That sort of comment is really unnerving and how are you supposed to respond to that?
Have a wonderful holiday season, you and yours!
I’ll have to say about the “I have a friend with myeloma” – I more often hear “they are dead now.” I especially like that one!
Aloha Marjorie,
What an excellent title for your article! I can't tell you how many folks have suggested the "answer" to my myeloma. I have become very adept at listening to them and thanking them for their concern. I then let them know that I will think about that.
What I never do is try to justify how or why I treat my disease. Other than my closest friends and family, I just don't see it as any of their business. If they persist, I explain the virtues of a bacon sandwich and a glass of gin. That usually ends the conversation.
Besides, I find it too complicated to explain that my most valuable treatment is a cold beer after a day spent fishing or hunting. Never underestimate the value of stress reduction in our lives!
Keep enjoying your bubbles!
Carpe Diem
Tom
I can relate to your column. What really bothers me is when I know someone with myeloma who is doing so much better than me. One person in my support group is on the same drug regimen as me, but her M-spike is 0.2 whereas mine is 1.2 at the moment. I have to remember that we all are individuals who react differently to medications.
Thank you, Marjorie. As I'm reading your article, I am having a glass of white bubbly. Shows you we are never alone.
Dear B, thanks for your comments. I guess the sentiment is to try to cheer us up and to try to make it sound like a simple disease. If only, as you say!
Hi JoAnne, thank you very much. What a lovely thing to say which means a lot to me.
Dear Nancy, wow - 'it just isn't your time yet' - that really does take the biscuit! It would leave me speechless too.
Hi Julia, just last night someone said exactly the same comment to me. It does seem so very strange and I have no idea how to respond. At least we can share these comments with each other. Thank you.
Aloha Thomas, I love your comment and I share all the sentiments associated with a cold beer after a day out fishing. Cheers!
Dear Jill, I think that it is very hard when someone on the same regimen is doing so much better than you. Somehow it enhances our feelings of being poor responders. I had that sort of experience and I found it very difficult to deal with. I wish you well and hope that things get better for you.
Hi Leonie, I am delighted to share the bubbles with you! Cheers and every best wish.
And I occasionally enjoy the "red happy juice," heehee. Good for you, Marjorie. We have to have a sense of humor when confronted with all the "advice" that comes our way when we are first diagnosed. One well-meaning woman begged me to stop taking my Revlimid because doctors are lying to us and that they already know of a cure for cancer. She believed that the raw, organic, natural diet was the cure for all cancers. This was also the same woman who had just had her big toe amputated because of her diabetes. Why she didn't believe her doctor was lying to her was beyond me ...
I guess I'm lucky unsolicited advice doesn't bother me. I put up with ignorance most days. Why would I get upset at well intentioned conversation? I let them say their piece and then move on. Maybe I blow them off unintentionally and "their feelings get hurt," but it doesn't bother me. I like hearing "Nobody is guaranteed a tomorrow." Makes me appreciate today even more. I still wouldn't trade my life with many other people (except to be young again).
Great post, Marjorie. It is true people will say some strange things. And it is hard to know how to react. You put into words what I've felt when people say, "nobody is guaranteed at tomorrow." That is true and yet it's more like they will have the tomorrow or next year and for us with myeloma ... who knows.
BTW, I'm all for the 'bubbly' aid for helping us through.
Great article. I almost always deflect the conversation to talking about their lives, and it really works. Very few people I talk about my myeloma with. I find often people will say a response that 'lets them off the hook' so they don't have to support me with time or help or acknowledgement that I am dealing with an incurable cancer. Not criticizing, or taking it personally, that is just human nature; sure I have also done this with others. I am trying to learn sometimes the best response is just to hug the person and say "I am sorry you have to deal with all this." Other times I give cash to help with gas for all the medical trips they make. For the times when I doing well, grateful for friends that let me just be normal with them and give me a much needed break from multiple myeloma.
I totally understand why it would be so hard to be in a group and watch another get a better response with a drug than you are. I have been blessed with very good responses to auto transplants and chemo regimens for over ten years, and I do not attend support groups. How we respond to treatment highlights that we are dealing with several types of multiple myeloma and no amount of 'green juice' is going to change that. I know that I don't have a clue what it is like for many with multiple myeloma. The only advice I never hesitate to give is "make sure you are being treated by the best myeloma specialist available to you." I have lost way to many friends to multiple myeloma. Though for me, those living a long time with multiple myeloma give me hope.
Dear Susan, you are correct that we need to maintain a sense of humour! I laughed when I read your comments! Best wishes to you and keep on the 'happy juice'!
Hi Craig, thanks for your comment. I agree with you about appreciating every day and also listening and moving on - a good plan going forward.
Dear Christina, let's hope for as many good times as possible, helped on, as you say, with some bubbly!
Dear Jec, thank you for all your interesting comments. I can really relate to your suggestion of just giving someone a hug and saying that you are sorry they have to deal with all this. It speaks volumes and hurts nobody. Good luck and best wishes to you.
My name is Alastair Lamond. I am Marjorie Smith’s brother. I have been following Marjorie’s columns from month to month. Some of the topics are familiar to me because we have spoken regularly since she was diagnosed. The thing that intrigues me and moves me is the way that Marje is able to articulate these topics and to clearly connect with fellow sufferers and their carers. There is a camaraderie among readers that is quite extraordinary and the Beacon is a powerful way for them to connect and support one another. It demonstrates the power of the Internet to do good, helping and supporting myeloma patients around the globe.
Marje is a biology teacher by profession and has worked extensively in teacher training and curriculum development. Earlier this year, after returning from Singapore where she was treated for multiple myeloma, she gave a talk to the Royal Society of Biology regarding the science of myeloma and how it linked with numerous aspects of the biology syllabus in schools. The talk was inspiring and very well received. It was a further demonstration of her ability to connect and to help others to understand myeloma.
From what I understand, myeloma sufferers, particularly those who have a stem cell transplant, are taken to the brink of human endurance in order to give them the best chance of a long-term remission - and boy do they deserve it.
We are proud of Marjorie for her determination and resilience in adversity and for her willingness to share her experiences with others and improve the knowledge and understanding of this disease.
Finally, I would like to wish the Beacon and all its readers good health and happiness in the year ahead.
Just recently diagnosed with multiple myeloma and been treated. It's challenging but can be overcome with a positive attitude.
Marjorie, you absolutely nailed it! I have heard so many similar comments and feel the same way! The absolute worst thing that I heard from a "friend", which absolutely floored me at the time, was that my illness was "all I talked about" (I hadn't seen or spoken to this person in, literally, months), and that "people died every day" and that I "shouldn't be a victim". It was simply unbelievable and I was so incredibly hurt.
Hi, Marjorie.
Forgive me for posting this so late in the game. I simply loved your column! You hit many nails on the head with the uncouth comments you mention people making. My favorite these days is, "You look great! You don't look like someone with cancer!" I can't help wondering if they think I'm faking it! I'm in remission, taking 10 mg of Revlimid. If only I were faking the side-effects!
Happy New Year and keep enjoying those pink bubbles!
Olga
Dear Alastair, thank you for your lovely comment, it means so much to me.
Hi Joan, I hope that your treatment goes as well as possible and you keep feeling positive!
Dear Pris, I am so sorry to hear of those comments from a 'so called friend'. I wonder why some people are so insensitive, somehow we have to try to move on from these comments but it is not easy. I hope that the hurt will fade, and I wish you all the very best.
Hi Olga, your comment made me laugh. I have also encountered 'you don't look like someone who has cancer' but I had not thought of the idea of 'faking the side effects of Revlimid'! Hoping you also can have some pink bubbles to help you on your way!