November is National Family Caregivers Month and we want to honor the caregivers of our community who make sacrifices to provide their loved ones and patients with love and support around the clock. What has your caregiver done to help most during your experience with blood cancer? Caregivers, what have you learned most from your loved one living with blood cancer?
I am lucky to have 3 main caregivers. My youngest son Elijah was 14 when I was first diagnosed with cancer. After a bout with septic shock I awakened on the Oncology floor of our hospital and given my cancer diagnosis. After a month I returned home. As I was still largely bedridden my son learned how to prepare our meals, ride to the grocery with an adult friend, help me to shower, did our laundry and general house cleaning. I was eligible for a stem cell transplant when he was 15. At that time he pushed saline through the ports on my chest catheter and gave me stomach injections during the run-up.
Post stem cell my sister traveled to be with me to help in the recovery. She moved in and ran the household until I became able to function again. She contributes financially now when I need a little extra help. She and her husband help support Elijah now that he is in college as he has started his sophomore year.
His older brother, Caleb, my first born, was home on summer break this year during my relaspe. Over my strident objections he did not return for his senior year at college and has stayed home with me. As it turns out he has been invaluable to my recovery. I am taking an immunology med which is given through an IV every Monday (est. for 5-8 months). Without complaint he drives me and stays with me for the infusion. He grocery shops, meal preps, walks our dog, shops for household needs, and makes repairs around the house. I extracted a promise from him that he would return to school (He’s a honors senior in a top 5 national school studying chemistry) As an aside to that he studies and researches all my meds for my immunology and chemotherapy teeatmentHe has been impressed as have I with the treatment protocol from my Oncology practice. It’s best practices across the board.
I could go on but it’s been my sons and sister who have given me great care for the past 5+ years.
Hi @paulgaddes – It sounds like you have raised two incredible sons. I bet you are so proud of the young men they have become. I am so sorry you have had to endure so much but am so glad to hear that you have such a great support system within your family. How have you been feeling lately? Thank you for sharing your story and being a part of the community. Please know we are always here for you and your family. Warmly, Anthony (Team Member)
Thanks. My boys mom left us when Elijah was in kindergarten. I stepped down from a high stress, high paying job to raise my sons It worked out fine with some belt-tightening. They make me very proud..
Since relapse, I have felt pretty good except for the side effects which are getting easier as the drugs get into my system. I expect to be in good shape for Thanksgiving.
I drive very little as the spinal compression (I have lost 4 3/4 inches in height since 2013) impacts my full response with my legs and the dexamethasone seems to promote growth of my cataracts so my vision is impaired. Taking myself off the road is far better than harming someone or myself… So again my son Caleb being here with me is a big help. Not sure of exactly of my plan will be although my meds can be mailed and all the major groceries are delivering so other than trips to my Dr that’s the bulk of my driving and there are neighbors willing to help out. But that’s down the road
@paulgaddes I too had my wife leave, except it was right after I came home from the hospital with lymphoma. I totally get the feelings that go through your head, but it seems like you were lucky enough to be given some amazing children. Amazing, though, because of the person who raised them – don’t forget to give yourself some credit too! It sounds like you’ve cultivated some great relationships with friends and family. Thanks for sharing. Keep on keepin’ on, DPM