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Myeloma Caregiver Wife Blog: Caregiver Support

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Quentin Crisp said, "Health consists of having the same diseases as one's neighbors." I have always thought that was a good explanation for why support groups work. 
 
When Tom Blakney's wife Kay was diagnosed with multiple myeloma in 1997 in Seattle, WA, they attended the first meeting of a fledgling myeloma support group with five other families. A month after the group was formed, its leader, Ray Larsen, passed away. Tom volunteered to step in and lead the group.
 
Tom and Kay saw the value of a disease-specific support group though they had never participated in one before. They moved the support group to their church, Aldersgate United Methodist Church in Bellevue, where it continues to this day. 
 
Kay had a cousin, Mary, who was also an important part of their support system. Mary often provided care for her cousin in the form of emails, lunches, walks and companionship. When Mary's husband passed away suddenly in a tragic car accident, their roles were reversed and Tom and Kay began to provide care and support for Mary.
 
In 1999, Kay lost her battle with multiple myeloma. Tom's orbit stayed with MM and the support group they had nurtured. 

Tom and Mary fell in love and married, with the strong feeling that the hand of God--and the blessings of their spouses--were directing and embracing this union.
 
Tom and Mary continue to run the Seattle MM support group, The MM FIGHTERS! Tom refers to it as their "mission project." Because of their history as both "caregivers" and "cared for," caregivers have a special presence in the Seattle group. As Tom noted, "The quietest person in the room is often the caregiver to a newly diagnosed person," and they are often the ones most in need of empowerment. To address this, the caregivers and patients are split into two groups every other month. Many of the "seasoned" caregivers are savvy and up-to-date on MM, and they have a lot to share. Mary leads the caregivers' sessions, while Tom leads the patients' sessions.
 
After hearing about this, we tried that same splitting of caregivers and patients in our local Portland Oregon MM Support Group meeting last month. I think both groups were enriched by the depth of the communication that happened in each group. There are some topics that a caregiver can't talk about in a room with MM patients in it, and topics that are equally challenging for a patient to say to anyone but another MM patient. 

The MM FIGHTERS! Support Group in Seattle is now about 200 families strong, mostly served by an active email/internet connection by Tom and Mary Blakney. The monthly meetings are attended by 30-45 patients and caregivers. The Washington MM community is thriving because of their unique partnership and commitment.

Caregiver stories fascinate me. Passion and survival are incredible forces. The journeys tend to have a much more powerful trajectory than would ever be imagined going in, and a great amount of energy. I suspect that many of the myeloma support groups have an interesting and inspiring history. How did yours start?

27 Comments

Being Diagnosed at 41 was quite a shock but with the help and guidance form Tom & Mary this journey has been much easier to travel,
Thank you both
Mike

Thank you, for writing an excellent story and sharing personal information about Tom and Mary Blakney. These two are truly "Unsung Hero". I first made contact with Tom in December 2011 when I receive my diagnosis of MM. Like all new patients, I was scared, unsure which foot was in front of the other and wanted to gather as much information on this disease to enlighten myself and know what I had in my future. One phone call to Tom from our winter home in AZ and I was placed on the list as our summer home is in Manchester (WA). Tom and Mary both extended themselves on the phone, provided me with a current roster of other in the group and has faithfully sent me every possible piece of news release and updates one could ask for. THANK YOU TOM! Shortly after making contact, Tom and Mary planned a trip to AZ and offered to come meet me in person. Unfortunately, I had a conflict in my schedule the one day he was to be in our area however, I still look forward to meeting them both in person. Being retired from the U.S. Navy - I extend an old naval saying when describing outstanding performance in what Tom and Mary do with a simple WELL DONE!

Thank you for a beautifully written article and this homage to two remarkable people who have turned their personal tragedies into a way to help others.

Thank you to Tom and Mary, and thank you to you too Kim for highlighting their story.

My wife acted as my caregiver when I underwent a stem cell transplant. Afterwards, even though my cancer stabilized, I felt the need to commune with others living with multiple myeloma. My support group has become a caregiver of sorts, serving to settle my emotional edginess. My three year association with this group is well worth the 60+ miles I must drive to attend.

Thanks Kim for the story. Keep finding them. It feeds the soul.

We live in the Sacramento, Ca., area and I do not know of a support group here. Can anyone offer a resource or suggestion. It would be wonderful to have one here.

Thanks Kim.

Hi Sally, we live near Sacramento and last july my husband was diagnosed with MM. He has had radiation, chemo and underwent a stem cell transplant on March 9th. Next week he begins his maintenance drug and to this point all has been successful. We have thought about a group as well but have not researched it much. Let me know if you would like to talk, we would be happy to share our journey and listen to yours. Just let us know. Take care of yourself..

Hello Janene, I would really like to get a group together and nurture a network of patients and caregivers. Our home number is 916-684-5237 (we have a screening voice message), my cell is 916-704-6737 and the email is regnsal@comcast.net. I look forward to being in touch.

Sally Jardon

Hi Sally-
We live in Placerville and would be interested in a support group specific to Myeloma too!

My husband was diagnosed at Sutter Roseville after very serious back and neck surgery on August 12, 2011.

Maybe we can talk?

Let me know and I'll email you my phone number!

Hello Kitty,
I would really like to get a group and network of patients and caregivers put together. My home phone is 916-684-5237 (we have a screening voice message), my cell is 916-704-6737 the email is regnsal@comcast.net. I would love to hear from you.

Sally Jardon

Hi, I really want to get a group and network put together of patients and caregivers. I can be reached at 916-684-5237 (we have a screening voice message), my cell is 916-704-6737 and the email is regnsal@comcast.net. I hope you will contact me.

Sally Jardon

Thank you Kim for your words of wisdom. Where would we be without our caregivers and support groups? I know I would never have made it without them on this cancer journey these last 6 1/2 years with Multiple Myeloma. Keep writing and I will keep reading. In gratitude for all that you do,
Rhonda

As I understand, the IMF itself began because there was such little information about myeloma available to the public -- and it was begun by both a caregiver and her husband, a patient. It's great that you're writing about the importance of supporting the caregiver as well as the myeloma sufferer. I was an RN when I was diagnosed, so I know both sides of the equation. I need support now, but I also needed acknowledgment and support when I cared for others.

Kim,

Thanks so much for sharing. My husband was diagnosed in early April. He had 10 radiation treatments on the large tumor on his lower back. He's just about to the end of his chemo treatment (we think). He's about to get a vertebrealplasty (sp)procedure done to stabilize his back and help with the pain. We think his SCT will be towards the end of next month. I don't mind telling you that as a caregiver and wife at first I was a mess. Finding out all the initial information was just information overload. Scared, Afraid, nervous, hurting to see my husband hurting. Good days, bad days. Even though at times I was a crying idiot I still held it together enough to take care of him, do research, work full time and keep our 2 year old granddaughter every weekend. There were just times when I needed my time to fall apart. I'm adjusting to it much better now. I don't think I've cried in a month now. I think I could deal with this a little better if he didn't have the type of MM that is at high risk for relapse. But I am so very glad that we live in an area that has great care for cancer of all types and that they are making such great strides in the treatment of MM.

Thanks for writing!
Liz

My partner was diagnosed in August 2010 and had a SCT in October 2011. I've been his caregiver on this journey. I attend the Philadelphia MM Networking Group when there's a topic that catches my interest. It's great to hear others' stories and get info on treatments and maintaining quality of life. I also attend the monthly caregivers support group meeting at his transplant center. That group has seen me through some hard times. I can vent and the others understand because they've all been where I've been. It always seems easier to cope when there's someone to talk to who understands the language you're speaking.

I am new to this sight. I have been married to my husband Rich for 7 1/2 years. we are both 68 and this is a second marriage for both (I was a widow and he is divorced) He was diaognosed this past June with MM. He had not been feeling well. They put him in the hospital after finding a problem with his protien level. They found out he was in End Stage Renal Failure and then found out that this was due to damage from the M.M. His first hospital stay was for almost 3 weeks where he was first put on Dialysis; then started the chemo (Velcade) for his M.M. His jouney with M.M. has not been good. He can not have a bone marrow transplant because of the dialysis and he is now on Velcade and Revlimed, but it is not doing what we hoped it would. He is now in 3rd stage M.M. and his doctor is talking about a new treatment, but has to see if he can take it with the dialysis. We both have great faith and are standing strong with our Lord. But I have to admit, I am really scared. Rich is hanging tough and trys to continue to do things around the house; then he comes in and sleeps all afternoon. My heart is breaking for him. But I will tell you that I would do it all over again, even if I knew this is how it would end up. He is such a sweet, easy going man, even with this hanging over him. Thank you for having the blog; it is somewhere I can come and read about others going through exactly what Rich and I are. It does help to read how other caretakers are dealing with this terrible desease. Thanks again for being so careing.

Kelly Cox from the IMF has contacted me by email. I will call her as soon as possible to see if she can offer some advice or direction on the matter of setting up a support group. I know my husband and I would benefit and I can't help but feel that there are others that would benefit too.

My sister was just diagnosed last week with this (unknown to us) disease. Any support groups closer to the Renton area? We need info. She just had her biopsy on Monday. Not staged yet. Any info would be greatly appreciated. She is my best friend and I love her. Thanks Diana

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