Has being a caregiver impacted your relationship in a positive or stressful way?

[CassieMRF]

I'm curious about the number of treatments that our caregivers on here have attended and how that has impacted you or your relationships. Has it brought you closer together or further apart?

[missyrand Ambassador]

Gosh CassieMRF, I had not thought about what the total number of treatments/ doctor visits I've attended as a care partner but I just did a rough calculation of melanoma oncology appointments, infusions, surgical consults, second opinion consultation, CT/MRI, mental health professionals (Psychiatrist and social worker) appointments, and skin check ups over the past 27 months since my husband was diagnosed and I came up with 106 visits. I have not generally attended blood lab draws but have assisted with transportation to probably 1/4 of the 40-50 that have occurred.

Impact on me: I am an information hog and I learn best by doing, so being able to be present for discussions with the care teams, to see and participate in looking at the cancer as it developed, spread, was surgically impacted, and response to interventions was important to me as part of an act of partnership and to shoulder recovery efforts. Because my husband's cancer is on the top of his head, it is also far easier for me to see than for him. And because I put a medication cream on the spots 5/7 days a week, I look at his head a lot!

This has produced a rollercoaster of feelings for me over time time. I saw the original single black small pimple-like spot that itched. I watched it get bigger between when it was biopsied and surgery. I saw it disappear and the large section of his scalp heal post surgery and how a scar eventually developed and hair grew back. Then I saw small dots appear in another location on his head, which led to him starting on Keytruda. This was terrifying. And for months the small dots would colonize and spread, in spite of the infusions. This was also frightening, and I felt afraid that although I hoped the treatment was slowing the cancer progress, that it would kill my husband. So I insisted on time with our families, and on a trip that we had longed for to be booked. We went to Italy to fulfill a long promise and at that point the cancer had started to recede. I learned how to be patient, and to embrace whatever time we had as time to be active. I also had to manage my own depression that had been very stable for years but worsened under the chronic stress of living with cancer, coupled with me also losing my full time job for 13 months.

The impact on our relationship of me attending appointments and treatments: it gives us time when we both fight the cancer together. Sometimes we are talking through what we learned from the doc appointment that always just happens before the infusion. sometimes we have a joint meeting with the social worker that has been providing therapy for my husband. Sometimes we read, or have work to do during the treatment. Thinking out loud here, I think going to treatment has made living with cancer a shared experience, even if it is not my body receiving treatment.

I don't know that this is for everybody. This last treatment our oldest daughter attended the appointment and treatment, including a visit with the social worker. I'll see if she wants to weigh in on this thread about her experience.

[slewis0921 Ambassador in reply to missyrand]

Missy, your response is so real. Thank you for that. You talking about being so scared especially when you talk about seeing more spots on his head...that fear can be paralyzing. I am so glad you turned that fear into action, like the Italy trip. You are a beautiful couple, and Wayne is so lucky to have you as a caregiver. You inspire me

[missyrand Ambassador in reply to slewis0921]

Thank you slewia0921

[slewis0921 Ambassador]

When my Mom was diagnosed in 2005, I was still in college. I was not able to make it to her multiple surgeries. The one I did attend, I was not fully "there", nor was I very supportive. I regret this decision almost every day. I am older now, and I really wish I would have been there for her more during the actual surgeries. If I knew then what I know now, I would have been fully there because she needed support from everyone. I am not sure I have ever even admitted to her that I feel like I dropped the ball.

I think part of the reason I am so involved in melanoma awareness efforts is because I feel like in some way I am supporting her. We have bonded through this horrific experience that is melanoma. Maybe that is the silver lining.

Attending treatments/surgeries as a caregiver can be hard because let's be honest, it is scary. It reminds you that you may lose that person, which for me is my biggest fear. However, I think you gain so much knowledge through the experience, and I think the patient feels supported, which is so important. Even if you just sit there quietly, you are there. You grow as a person, and you both can grow together.

[missyrand Ambassador in reply to slewis0921]

I have no doubt your mom knows the champion supporter you are now. Our kids are just a little bit older than you were when your mom was diagnosed. I feel like we walked a narrow trail between giving them information so they would appreciate the seriousness of the melanoma and staging, access to quality science through sites like MRF, and managing raw terror responses with hope and action. It was a tricky time in the journey.

[kellyOd]

My SO has been diagnosed now 4 different times, i have been with him for the last almost 3 years now, so all the ones IVE been to personally ive lost count. when he was in remission he was in a clinical trial for Yervoy, and when he was recently rediagnosed in August, we've probably gone to over 30+ appointments, blood draws, oncology support appointments, and other hospital stays.. to be honest, in our 20's its pushed us further apart. we've had our good days, but most days seem to be worse.. i vow to push through this. but i dont know what it will be by the end of this ordeal..

[HSsweetheart]

My husband is a loner so I've felt privileged to attend all his meetings to date. Though he's extremely active in his own care, I'm hoping to provide moral support as well as stepping in to help with the kids (he's a stay at home Dad). Hard to say if this will bring us closer together or drive us further apart as fear and pain can exacerbate existing personality traits or trigger an about face in attitude. Can't tell at this pretreatment stage.