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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: Nov 15 7:18pm | Replies (329)Comment receiving replies
Lori,
It is so encouraging to have forums such as these to share and talk about our conditions and procedures. You bring up the challenge of watching and waiting when we want to be active participants in our care plans. I felt somewhat relieved and thankful to have a diagnosis of SMZL and am lucky for it to have been diagnosed early. However, sitting still is not in my nature, and I find myself searching for research and information on how I can play a role. Have you seen much work on patient involvement and proactive care inbetween doctor visits? Recently I was made aware of a new book titled "Moving Through Cancer" by Dr. Kathryn Schmitz. "An exercise and strength-training program for the fight of your life." Slowly I'm seeing more attention to this topic. Your thougths?
Laurie
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You brought up an interesting subject of proactive care. I’ve been extremely fortunate to have positive experiences with my medical teams and their approach to patient care. Instead of being “patient passive”, I appreciated the fact that I was encouraged to take charge! Like you, I’m not a stationary person! I need to move and be active. Throughout my AML chemo, I pushed my IV cart around the hospital wing 4 miles each day! My oncologist/hematologist and the nurses used to laugh along with me because I had a squeaky wheel! One of my nurses found a replacement so I could move more stealthy! ☺️
But in reality, they were all so supportive and felt that this was my key to quick recovery from the AML chemo. It was contagious too! Every day there would be another patient joining me in the hallways, motivated by the camaraderie of the cancer team. I was also provided with a physical therapist to give me instructions on using resistance bands to keep my muscles from atrophying and my bones strong while in the hospital.
My stint at Mayo was no different. They are all about patients being proactive in their own care. I was given the ‘tools’, the information and instruction for living a full and healthy life with exercising, diet, mental and emotional heath. It’s vital that we take charge of our own lives.
“Moving Through Cancer” sounds like a marvelous book! Thank you for sharing! It’s so important, in cancer care for patients, to remain as ‘normal’ as possible and exercise is crucial. It keeps us physically and mentally motivated. This would be a great new conversation in the Cancer group/managing symptoms. https://connect.mayoclinic.org/discussion/exercise-during-chemo/
Have you looked into this group?