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Myeloma Lessons: I Get By With A Little Help From My (Myeloma) Friends

By: Andrew Gordon; Published: October 1, 2015 @ 3:10 pm | Comments Disabled

I have written before about our need for help. No cancer patient can go it alone.

One of my fellow columnists recently wrote a compelling column [1] about her caregiver and his importance in her battle with myeloma. The primary caregiver is the most important person in our lives.

In my case, fiancée Audrey has been an equal part of the team from the very beginning. I could not have dealt with the disease if she had not been there every day with strong support and encouragement.

I have also been fortunate to have assistance from many other family members and friends. They constantly motivate me to deal in a positive manner with all of the ups and downs of the disease, the treatments, and their side effects.

And, of course, none of us would survive for long without our medical team. You can’t beat this disease with positive thoughts; you need tests, treatments, and expert medical guidance.

All of this help from such wonderful people is necessary for us to cope, but it is not sufficient.

We need something else.

Our family and friends can be empathetic, but do they really know what we are going through? The ques­tions, the dark thoughts, the concerns that rumble about in our brains?

There is nothing like talking to someone who knows exactly what we are experiencing.

That is the fundamental premise behind support groups. Whether it be for people with cancer, drug or alcohol addiction, or mental health issues, support groups provide a forum for people facing similar chal­lenges to get together and exchange ideas. There is little question that support groups can be an im­por­tant part of understanding your disease. They also help the patient to feel less isolated.

But in my mind there is one drawback to the support group model: you have to go to a specific place at an appointed time. It may or may not be convenient geographically, or the day the support group meets might conflict with other commitments.

Then there is the issue of the people in the support group. Frankly, you might not like some of them. If you are a particularly intolerant person like me, there is almost certain to be at least several people who annoy you.

I am just not a “group” person. This came out clearly to me on our recent vacation. It was a cruise with land excursions at the various ports. Invariably, our tour group would include a person who, by the time the excursion was half an hour old, I would want to strangle.

So if you are like me and just don’t like people (I know, a bit of an exaggeration), what to do?

The answer for me has been online places like the Beacon. The forums at the Beacon [2] are a place where myeloma patients and their caregivers can go to discuss their symptoms, treatments, and side effects with others who have had similar experiences.

And if you don’t like someone, then you can just ignore them. You log on when you have time from anywhere and stay as long as you like.

This really is the perfect setup.

So I was moseying along taking advantage of this virtual support group when an unexpected thing began to happen. I started to strike up friendships with some of the other Beacon forum participants.

It started with exchanges of private messages, progressed to emails, then to phone calls and, in some cases, in-person meetings. I know it sounds a bit like online dating, but I assure you that it is all on the up-and-up.

At some point, based on a comment in a forum post, I deduced that one of the forum members lived near me; his name is Don. So I sent him a private message and we discovered that not only do we live about 20 miles apart, but we were being treated by the same myeloma specialist. Thus began a very important friendship.

We talk frequently to exchange thoughts on the decisions that each of us has to make about our treatments. I always know when Don is getting his monthly results, and he calls to check on mine as well. It also helps that we have the same doctor who is, shall we say, a bit quirky.  It’s good to have someone to rely on when trying to understand the doctor’s unorthodox approach.

But at the end of the day, although there are many differences in our situations, Don and I rely on each other for ideas and for help in making decisions. This is no substitute for the guidance that we get from our families and our medical team, but it is an invaluable component in our dealing with the disease.

There is a fellow named Paul with whom I have been corresponding off and on for about two years. We also “met” on the Beacon.

Paul lives about 120 miles away, so it was not practical to meet in person. At least it wasn’t until Paul sug­gested that we meet somewhere in between for a bike ride.

So about a month ago we met at a rail-trail about halfway from his house to mine. We rode at a leisurely pace for about two hours, and the setting was conducive to a conversation about myeloma and life in general.

At the time, Paul was getting ready for a stem cell transplant. Since I have been though one, he had many questions for me about the procedure and how I managed. Sure, there are plenty articles about transplants, but there is nothing like talking to someone who has been through it.

I also learned quite a bit from research that Paul had done. And we both became acquainted with each other’s life story.

These are just two examples of my myeloma friends who help form an informal support group, sometimes in person, and sometimes in the virtual world. These people, like all of us, are searching for answers, and they are always willing to help. They are essential to me in attempting to cope with the challenges myeloma presents.

Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here [3].

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


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2015/10/01/myeloma-lessons-help-from-my-myeloma-friends/

URLs in this post:

[1] compelling column: https://myelomabeacon.org/headline/2015/08/15/northern-lights-my-spouse-as-my-caregiver/

[2] forums at the Beacon: https://myelomabeacon.org/forum/

[3] here: https://myelomabeacon.org/author/andrew-gordon/

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