Myeloma Lessons: I Get By With A Little Help From My (Myeloma) Friends
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 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 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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks Andrew for your interesting column! I was mulling this over also. I have people affected with myeloma that I know personally and meet with at my local support group, and even nationally, since I try to go to national myeloma meetings sometimes. Our local group is having a two day conference on October 24-25, and usually there are dozens of patients and caregivers attending. I actually am a 'joiner' and belong to other groups also.
But I really appreciate having met many friends online at the Beacon, most of whom I probably would not meet in person. I think that the sharing of ideas and thoughts, as well as the experiences of being treated for myeloma, is priceless. I feel like I have gotten to know the columnists, and the Forum is a very valuable intellectual and medical resource that many of us can learn from. It is more than that too, since many times really sympathetic people post in with helpful comments.
Andy I totally agree with your approach to surviving cancer through many levels of support, and you seem to have found the right combination for you. One's caregiver that stays with you throughout the process from diagnosis to treatment to recovery and living with is truly a gift. As you identified Audrey as that special person, I too have that gift in Tom.
When one is faced with the complexity and unpredictability of a disease like cancer having many others with you is key. I ran a hospital-based support group for men living with HIV and its value is in the group dynamics and the ability of the therapist to assess individuals for group appropriateness. You mentioned finding support from another patient from the same clinic or practice and how valuable that is. Well, that is true for a hospital-based support as I found, unlike you, many people are so traumatized from the illness their fear of seeking answers overwhelms them leaving appointments without the necessary understand of their role, medications and compliance. That's where the support group along with role playing provides them the education and tools to manage.
You mentioned the medical team. Team is the optimal word here. Last week when watching Fed EX Golf Tournament, I was so impressed with the young golfer Jordan Spieth who referred his win to "we" instead of "I". He sees his accomplishment not as an individual act but one of many of his team all having essential roles in preparing and supporting him. That is exactly what a cancer patient needs -- their own "team" from the professionals to love ones, friends and fellow cancer survivors.
Best to you ...
One of the issues with many people having a caregiver, or family members / close by friends to support them is the fact that there are people like myself who are not in that position. I attend all appointments alone. I should qualify I have been so doing as a teenager, not because my parents were uninterested I suppose I did not want to bother them, although as they grew older and I became their carer I attended and dealt with all their needs with the relevant 'systems'.
I have attended support group meetings twice this year for the first time, like Andrew I found some individuals dominated with their rigid opinions and experience, which I think is unhelpful. There are people who need expert advice who inappropriately raise issues in the group setting. There are in fact all sorts. I do not feel I learnt anything. We get the contact details of attenders sent out to us, so in theory I could contact other group members who live near me.
Although I would love to attend international meetings not just national ones I would need someone to come with me to assist me. I battle alone with daily living tasks.
The online community are not friends as such in my view but helpful people with whom one can share experiences with a difficult illness which leaves most everyone worried with a different and unpredictable outcome. But sometimes the knowledge we gain can be worrying too e.g. knowing that in the USA treatment options with drugs is more flexible than it is in Europe. I know people in the UK do look across to your country and feel we may be 'short changed' in terms of options/ choices.
Important is to try and keep in touch with my 'non cancer' friends etc, even if unable to physically meet them through distance. I do not want to define myself as a person through my cancer and know these people cannot offer practical support, but at least they will contact to ask how I am doing.
As Nancy notes support from the professionals cannot be underestimated. I sometimes wonder if my care really now comes from the nurses, doctors etc. even receptionists who get to know you and understand when you seek help. Of course that care differs from the support of a caregiver in the community which is important to most.
So help and care can come from many quarters to meet different needs. But I regret spending so much time online as this says something about our lives too.
My wife goes with me to every appointment that I go to, mostly to help me understand what the doc really said. I'm a retired dentist , so I'm not always the dumbest guy in the room. After she tells me what she thinks she heard, we come to some sort of conclusion and then I call Andrew to discuss what went on. Andrew and I do not always agree as to how to go foreword, but I'm pretty sure that we discussed all the options and move on and later discuss how "that's working out". There rarely is just one option, so it is often nice to have someone hold your hand when you decide. Thanks for being there Andrew.
Don Hoke
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