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Living For Lamingtons: Rules For Remission

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Published: Oct 11, 2018 8:03 am

When I wrote my first column for the Myeloma Beacon, I talked about the rules I invented to try to help me survive both the process of induction ther­apy and the stem cell trans­plant.

There were three rules.

First, do exactly what the doctor and all the nursing staff tell you to do.

Second, make as little fuss as possible.

Third, look forward and not back.

They were pretty simple rules, and I think keeping to them helped me to survive that time in one piece, more or less.

Last week marked the third anniversary of my stem cell trans­plant. I remain in remission, and I feel very fortunate to be in this place. Anniversaries, I think, often cause you to reflect on times past, and I’ve been thinking about the three years that have passed since the trans­plant.

I recently realized that, without planning it, I have invented some new rules, my "Rules for Remission."

Once again, they are quite simple:

1. Enjoy each day

It’s that simple. Do as many things as possible every day that bring you pleasure. In the past, I would have seen that as a very selfish sort of mantra, but not anymore. I feel the need to enjoy this time of remission, and I try, where possible, just to take opportunities to enjoy nature, walk in the countryside, and spend time with the people I love.

2. Try to keep fit and avoid in­fec­tion

Again, a simple rule that I make every effort to follow. I stay away from places where I might pick up bugs. I don’t go to the cinema, theatre, concerts, or really any big gathering. I stay away from public transport and, if I do travel, I wear a mask and I use hand wipes and gels. I don’t go into schools anymore and only work with children in the outdoors. I am sorry not to go to concerts and the like, but whenever I am in a crowded place I pick up some kind of bug. Giving up on attending events where can be large crowds seems quite a small price to pay for a healthier life.

I try to walk each day, and I push myself physically whenever I feel I can. As a consequence, my resting heart rate and blood pressure are low and I’m quite fit. This rule is quite easy to keep.

I like to be as fit as possible, and I feel that this is the one thing I can do that may help me to cope with whatever treat­ment is ahead of me. When I was diag­nosed, I certainly was not in good shape, and I feel that made coping with all the treat­ment regi­mens more difficult.

3. Do meaningful things

Maybe this sounds odd, but I would like to try to use some of this remission time to do things that sort of matter. For example, I write this column. It seems to resonate with other people who have myeloma, so it has some meaning.

I spend time work­ing on projects that encourage people to enjoy the outdoors in my local area. Again, this seems to be quite important and therefore meaningful.

I also spend time sup­porting work that enables very poor Indonesian children to go to school. I lived in Indonesia for four years, and the poverty of the poorest people has left its mark on me.

I don’t want to sound as if I’m work­ing to­wards being the next Mother Teresa, but I just try to spend some time doing things with meaning whilst I am in remission. I found during the time of induction, the stem cell trans­plant, and the aftermath that I could only really concentrate on my illness and everything that went with it. I felt that, not unreasonably, my days were just all about the treat­ment and how my husband and I could man­age that time. Other meaningful things just passed me by a lot of the time. At the moment, I have the time and energy for other things.

4. Be aware of your limitations!

Another way of capturing the intent of this rule might be "Try not to do things that keep you from adhering to the first three rules" (which sounds like one of Isaac Asimov’s laws of robotics).

This is certainly the most difficult rule to follow.

I hate saying no to certain events and activities, particularly if they sound like good fun. For example, I recently attended a local fundraising event. I enjoyed the day and par­tic­i­pated in all the activities, and then I got some horrible virus! Lots of people, particularly young children, in a confined space seems to be a recipe for in­fec­tion for me. I find myself saying yes to things where the sensible answer is no. Perhaps I will learn and be more aware of my limitations, but I can't help wanting to just forget about myeloma and be the 'old Marje' again.

I’m hoping that my rules of remission help to make this period of my life as good as it can be.

Do you have any "rules of remission" that you follow?

Marjorie Smith is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her pre­vi­ously published columns here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Marjorie Smith, monthly columnist at The Myeloma Beacon.
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7 Comments »

  • Lori Puente said:

    Love it!

  • James McGivern said:

    Great article and reminders. I'm coming up on my fifth year since diagnosis. I still try to love what I do and do what I love, just can't do as much of it as I'd like. But I press on until that day. Blessings for all!

  • Nancy Shamanna said:

    Dear Marjorie, thanks for telling us how it is for you now that you are in a remission, and yet still immune compromised. It sounds like you have a full and meaningful life, and are managing to keep the myeloma in the background too. I hope that your remission continues on for a long time, and that you get stronger in terms of your immune system also.

  • Marjorie Smith said:

    Dear Lori, glad that you like the article - sending you best wishes.
    Hi James, it is great to hear that you are on your fifth year since diagnosis and that, mostly, you can do the things you love. Long may it continue.
    Dear Nancy, many thanks for your comments and yes I am hoping that my immune system gets stronger. I am sending you good wishes and hoping that you are having some autumn sunshine.

  • Susan Mandel said:

    I think you've covered it so well! I totally agree with your 4 rules. I follow them as well and think they work wonderfully. I am approaching the 11th anniversary of my diagnosis and have been enjoying 10 years of remission, praise God! I'd like to travel more but since our budget doesn't allow it right now, I enjoy shorter distance trips and just enjoy life. :)

  • Janice McDonald-Zavarce said:

    This is a timely message. Stem cell collection tomorrow and Day 0 next Tuesday. A little concerned about the steps you have to take to stay healthy - I'm not good at that. But I guess I can learn.
    Thank you
    Janice

  • Marjorie Smith said:

    Dear Susan, it was great to hear that we follow the same rules! Also delighted to hear of your 10 years in remission. I hope you continue to enjoy your trips and stay well. Best wishes.
    Dear Janice, I wish you all the luck in the world with your stem cell collection and transplant. I would imagine that the staying healthy steps will come more naturally than you think. Wishing you all the very best and stay in touch if you can.