When I wrote my first column ^[1] 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 ^[2]).

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?