A blog reader with SMM (= smoldering myeloma) asked me to write a post on fear…specifically, on how to deal with the fear of starting or going through treatment or the fear of having our blood tested. He is amazed at how incredibly stressed out he gets before having his periodic blood tests and would like to hear how others cope…

I thought it was a great suggestion. So I began writing this post. But nothing came to me. No words. No comments. No bits of advice. Very few thoughts at all, in fact. Why? What’s wrong?

I have some thinking to do in the next few days…


  1. Margaret,

    One of the ways I cope with this issue is to realize that whatever is going to happen will happen regardless of whether I worry about it or not. At that point, it becomes a choice of how I want to spend my time – do I want to spend it consumed with fear, anxiety and worry, or do I want to immerse myself in family, friends and activities I enjoy? Of course, this is easier said than done…

    Another coping mechanism is to set a limit for worrying – “I’m going to worry like crazy for 15 minutes a day, then I’m pulling the plug and getting on with other things”. Fear of relapse and anxiety over tests is very common and something all of us patients understand. Finding a diversion of some sort can be beneficial, or reaching out to someone else who needs help in some way.

    I completely underestimated what a head trip having any kind of cancer is, and I think most healthy folks do, too. It is terribly easy to let one’s imagination take over, but it can destroy the quality of life one does have. Finding a good counselor or support group might be another avenue to pursue.


  2. We are early on in this living with Myeloma and “watchful waiting”.

    On a practical level it is a good idea to think about what your next steps will be depending on what the doctor says. Like a tree, depending on results, different branches are taken. Maybe it will be nothing new for now or, if a particular treatment is suggested, take the branch of what further consultations and exploration is needed and try to consider as many possibilities as possible before you have text result.

    On the spiritual side, when you are in bed and night and the fear of pain, suffering and separation looms in your mind, give it to your God or any God and let it be until morning. If you are the type to pray, pray for wisdom, the kind the comes from intellectual inquiry, the intuitive kind that floats up from the subconscious and the wisdom of faith.

    It is also nice to be with people who know nothing of your situation because you can immerse yourself in whatever is going on at that moment.

    There is nothing like a friend who is going through their own problems to commiserate with. If you don’t have a suffering friend join a cancer or other problem group.

    Interestingly this blog turned up just when we will be leaving for sunny Florida with visits to friends and family. Our results will be in the mail when we return. Ouch!!

    It will be interesting to see if a changed routine makes living with “watchful waiting” easier. I don’t think doctors have any idea of just how difficult this is. A friend who doesn’t know about our situation said that the best way to face adversity is to think of the ways you will deal with it.

    For myself, I love to tune in the Margaret’s world of cats and Italy. She always makes me feel better because she is positive.

  3. I know the fear. One thing that helped me was a nurse at Mayo I was talking too. I told her how even though I try, waiting for those results is still tough…I am on edge the week of my check up. She told me her husband has to have the same blood work, and it never gets easier. Strange, but that really helped. It is a fact of the disease. It is OK to be stressed some. One thing I can control, I get the blood work and the results the same day…so I don’t put myself thru the stress of waiting for results. And the good news is, the rest of the time, I hardly every think about it. So one week in four months–I can deal with that.

  4. Hi, I am caregiver to my husband who has an indolent lymphoma
    (and in 2006 he had a secondary cancer in his colon),
    tomorrow he has routine check up.
    I hate watchful waiting…what are we waiting for? for more
    advanced disease? for a miracle??
    Conventional oncology only offers blood work ,measuring of not
    very reliable tumor markers, cat scan, Pet scan…
    I hate tumor markers and the oncologist saying:oh, we must
    now wait to see whether the values get worse or not…
    in the meanwhile, patients are stressed and the immune system
    is suppressed…
    My husband uses CAM and it helps to ease anxiety,
    I try to pray and meditate…

  5. Maditiation!!
    I also rememebr long sleepless nights thinking of blood tests and what if!!
    My doctor suggest me to take some maditaion classes and its works! they teach you how to calm yourself through concentration in your breathing.
    Since then, even when I woke up at the middle of the night, few minutes of concentration in my breathing send me back to sleep.

    All the best,

  6. Too much thinking about what might happen only size caused more grief and pain. The Dalai Lama puts it nicely: “If you have fear of some pain or suffering, you should examine Whether there is anything you can do about it. If you can, there is no need to worry about it, if you can not do anything, then there is also no need to worry. “But that’s not so easy! In my mind I can think of much to reduce the fear, but my heart feels different and the pain is in the body. What does help is to live in the present: enjoy the moment when I feel good. The idea to do something, like reading this blog (and take curcuma) helps. The most frustrating I found that my oncologist said you can’t do anything. And the blood test? I will nevertheless still verry nervous … I’ll take a few drops of Avena sativa (because it is too early for a glass of wine)…and try to keep my mind quiet (call it meditation).

    Good to read all these comments.

  7. Knowledge & ownership.

    Getting as strong an understanding as I can manage really helps. My fear is mostly around the unknown and of being out of control. Choosing what action I can take – diet, supplements, looking after myself etc. I make it my job to treat myself – check that doc has ordered the right tests (ask about any changes), ask the nurse about what the different collection tubes are for (to make sure she has the right ones), getting a copy of the results sent direct to my home (with the doc’s agreement). Planning what I am going to do based on different results. By asking calmly, they tend to tell me heaps, and I worry less.

    Then recognising that it is OK to be nervous at test time. If I am on edge, I take test day and/or Dr visit day off work so I reduce the extra stressors.

  8. Hi everyone.
    I think the ‘waiting game’ is the hardest bit about SMM. I am 9 months into it and slowly it is getting easier. It doesn’t stop the fear everytime I am ill or I have an ache, but it is slowly getting easier to deal with it.
    At the beginning, I got REALLY stressed in the run up to appointments. It used to consume me. And then, I’d get really stressed once I got my results and things were worse.
    Recently I have had emails from 2 people following my blog that have turned my life round from the worrying perspective. We are bombarded with figures of what timescales will mean to us and I had been convinced that having a paraprotein of 40 meant I was about to be fully diagnosed. And then I got these emails. Both people got readings up into the 50s and 70s and still had no symptoms. That has given me hope, and whilst it doesn’t stop me being realistic, it also makes me think there is no point thinking I’m going to have to start treatment until I do.
    On top of that I’m being proactive; curcumin and fish oil, going to the gym to get fit (I’m going to fight this all the way!) and a sponsored 3 Peaks walk in July (www.justgiving.com/debgascoyne) for MyelomaUK.
    Don’t be afraid of facing the issues, go into them headfirst and then use them to your advantage and do all those things that you keep putting off.

  9. For me it was a shock, that i had to deal with two worlds. On the one hand, theres the scientific or medical world (numbers, tests, results, white floors, cr- or drug-studies, mrt). On the other hand there’s the fear, the psychological world. My inner world. The second one seems not important to the scientific world, because you could’nt measure it. (Go to our psychologist and talk, or meditate or visit the church, it’s up to you). But it would be so important to get (qualitfied) help at the beginning. Perhaps it is not respected because if you don’t have it, you can’t feel this tremendous power, that fear can have on your complete life, like a dragon living inside you, blowing pain inside your soul. I’ve no solution, but it would be great to have more respect for this second world and its importance. Tom (ps. sorry for my bad english)

  10. fear…that is the big one, no? confronting mortality…not being able to be oblivious that your time is measured. i reflect on a discussion i took part in, during a cancer support group for a friend in the late 80’s… asking ‘how much is enough?’ (life, time that is). in a certain sense i feel much more aware of my life now, which makes the living deeper, more aware, more alive. Right here, right now. this blog was a turn around for me as i was also frustrated with the watch and wait…like a time bomb ticking…but on every level the sense of being engaged, of being proactive is extremely helpful. i wouldn’t have chosen this hand, but it is what i have got now. and more than anything i want this to BE MY LIFE…i don’t want to feel disowned by something happening to me. and oh the joy of the moments of stabilty when they happen.

  11. Here I do smoulder
    at times feeling bolder
    strong as a soldier
    not thin like a folder
    but sometimes just colder
    as I do get older
    trying to kill time
    with ridiculous rhyme…

    Sometimes dumb stuff can help us keep our sanity! Gerry

  12. I suppose I live with a certain amount of fear constantly. nearly 3 years ago I was diagnosed with full blown myeloma; get the drugs NOW. After my transplant I have been blessed with a very low M spike. I take curcumin and green tea. That’s about it. Sometimes I feel like I’m living on borrowed time, like the next lab is going to be the one that shows it’s coming back. It is more of a momentary panic than a fear. And then I pray; desparately. And then I let it go…for a while. And after the results I’m okay…till next time. I try to just tell myself, whatever happens I’ll deal with it; I’ll deal with it later.

  13. I find I am able to temper my fear and anxiety of my SMM progressing by being thankful. I feel thankful and fortunate to have had 38 wonderful years of life already. I am thankful and fortunate to have a strong, supportive family and a wonderful husband. I am thankful and fortunate that I was born and live in a time and place where my SMM could be diagnosed and treatment options abound. So many people suffer so much more in so much less time.

  14. Fear. I believe, it’s not in and of itself, a bad thing.

    Fear keeps us safe, it’s a survival mechanism.

    That said, fear can at times, overwhelm us and paralyze us to inaction. At those times fear is not a good thing.

    So how do we handle it? Well, my experience with heightened fear over the last five or six weeks since I’ve been diagnosed with a solitary plasmacytoma after 3 years of MGUS, is that I use fear to motivate me to take all the necessary steps to seek out the best medical care team I can find, in order to do the best job I possibly can to protect myself and my family from whatever may be coming down the road on this MM journey.

    I continue to remind myself that it’s OKAY TO FEEL AFRAID, or sad, or angry, or anxious or any other human emotion as long as I do not allow those emotions to overwhelm my rational thinking. Easier said than done sometimes? No doubt about that…it can be absolutely tortuous! Still, like the Great Oz said to the lion, courage is not going forward fearlessly, but going ahead regardless of your fear.

    So I try to take as many positive actions as I can, knowing that as I consciously muster the courage, I will build a reservoir of courage to drawn upon in those times when life decides to blind side me one more time. Still, uncertainty, that tricky state of mind that it is, will no doubt always be pulling and tugging at me when I’m waiting for that next report, or that next treatment, or how I will afford treatment, or how my family will hold up under all the stress….and on and on and on…. Well, excuse my fluent ‘cliché-speak’ here, but I can only offer myself in such trying moments, (even though I’m not particularly religious in the conventional sense), a few repetitions of the serenity prayer:

    (God) Grant me the serenity
    to accept the things I cannot change;
    courage to change the things I can;
    and wisdom to know the difference.

    So, find a mantra, or a relaxation technique or two, or a good friend to talk to, take a few deep breaths, and know that there are many just like us on this same MM journey. And from my experience, most of those folks are more than happy to offer their help and advice on getting through this journey. I mean, look at this blog and all of the comments in just this one thread! We’re not alone, we’re together, and together we can help each other survive.

    All the best,


  15. I was diagnoised with a blood phobia.
    My shrink gave me 1 mg Lorazapam which I take half of atleast half an hour before I have blood drawn.
    I go to the emerg not the blood centre so I can stay lying flat for 5 or more minutes after the samlpes are taken.
    Also take a whole Lorazapam before my Pamidronate “hook up”, cuz I can’t look or get dizzy and pass out then too.
    Blood phobia and blood cancer is so unfair.

Leave a Reply

Your email address will not be published. Required fields are marked *