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My first In-Person Meeting with the Oncologist
RBION
88 Posts

It’s been more than a year and a half since my husband was diagnosed and today was the first time I was allowed to join him in person and meet his oncologist. It was a strange experience for both he and I since this has been going on for some time now. He led the way through the hospital, showing me where the cancer centre was and once through the doors, he pointed down a hallway telling me that’s where he gets his bi-weekly treatments. It was surreal for him since this has become such a regular part of his life. And for me, this place was no longer just a building where I dropped him off and returned three hours later to pick him up.

We met with his oncologist to review treatment options since plan A and B haven’t worked. This was an important discussion and one that I was glad to be part of since it let me watch the interaction and reactions of my husband and his doctor. I was happy to see the ease in their communication and to hear her telling my husband (and I) what the options are for treatments and pain control, and that it’s his choice how to proceed. Just hearing her say the decisions are his to make gives me peace of mind. I’ve read some CC posts where people don’t feel they have a say in their treatment plan and I’m thankful that both my husband and his oncologist see it otherwise.

Throughout Covid, I didn’t feel out of the loop despite never being allowed to attend appointments but nothing can compare to being at your partner’s side. Especially during stressful times. I’m sure I speak for many when I say it’s a blessing to finally be able to join and support your loved one this way. Do other caregivers have similar stories to share and tell how it affected you?

8 Replies
supersu
1108 Posts

@RBION

how lovely that you finally were able to be in attendance with your mate at this very important appointment.
that you are so comforted by the relationship that they have developed is wonderful news!

it is a testament to your good caregiving that you didn't feel ‘out of the loop’ this last year and a half--communication with your love must be very high level. you know I believe that caregiving is the harder part of this relationship…bravo for your fortitude.

interestingly, I rarely missed an appointment with my partner--he definitely wanted me there, and I was happy to attend….we all know what a control freak I am.
as time went on I had to sit out a few more than I was comfortable with; I always felt that I was ‘missing’ pieces of the puzzle--or ‘things were happening’ that I wasn't pleased with.

with the wisdom of 20/20 hindsight, age and the incredible example that folks like you demonstrate on this site I understand now that really it was actually a communication break down between the two of us. thank you for sharing your story.

best going forward to you both; with plan C and pain control options.

cheers/hugs
su

#caregiver #spousecaregiver #treatmentoptions #communication



Whitelilies
2272 Posts

@RBION Hi…I am so glad, for you both…that were allowed in…to be supportive, by his side, and more.

There is nothing like human interaction…..feeling warmth…..eye contact…..smiles….and just a “feeling” that someone cares……

You both have it; in Spades.

Regards

Whitelilies

RBION
88 Posts

@supersu I'm really thankful for the openness my husband and I share but it's nowhere near perfect :-D I'm not a control freak but I am a detail person, unlike my husband. I poured over the test results and doctor's notes that arrived regularly in MyChart! I needed to know and understand as much as possible so I could ask better questions (or get him to ask his oncologist).

I can't imagine how difficult it would be for people who started this journey before covid hit, when they could attend appointments together and then from March 2020 onwards it all stopped. My stress level would've spiked in that situation - I have a lot of empathy for those affected that way.

@Whitelilies you said it, there's nothing like it. Tomorrow I've been invited to join my husband when he meets to discuss his funeral arrangements. At the risk of sounding coarse, I'm looking forward to it. I want to be there. I don't want him going alone as that's not his wish. Together we can make this tough trip less ‘ugly’. That's what I can offer him.

D1955
120 Posts

@RBION

My husband has been going to his Oncologist since Nov 2007. I have attended all NL of his appointments with him. When Covid hit I would attend via video chat when he had in person appointments. It was super hard when he was admitted for emergency chemo in April 2021.

I keep a journal for his appointments, treatments, test results etc. There is too much to remember if we did not do that..

Good luck with his journey.

D

Trillium
2008 Posts

@RBION - so glad to hear that you are finally able to attend appts with your husband. Like you said, “Nothing can compare to being by your loved ones side.” You being there would make the time go faster too.

I would think, always having you there to talk about all of this with, must have been such a comfort for him even when you were not present at the meetings.

My son was diagnosed at the beginning of Covid and because of his disability I was able to attend with him. Thank goodness, but I felt bad for the folks there who could have used someone there with them.

When I took him to emerge with a high fever and low white blood cell counts (neutropenia) - I lost my mind at the emerge entrance because they were delaying his admission and refused to let me in. I apologized for my panicked communication and frustration with the guard at the door when he was admitted into hospital. She said she was not sure who the patient was! Which was a good laugh for us both.

The nurse from his care team called emerge because she used to work there and that then allowed them to call me and update me everyday - which of course eased my anxiety somewhat!

Interesting to hear what others went through.

RBION
88 Posts

@D1955 if a pandemic had to happen, at least it was in a time when video calls were possible. I was able to join a handful of my husband's appointments through conference calls while parked outside in my car. We didn't think of video calls since the communication was done through my husband's cell phone. Did your doctor's/hospital have a video system set up or was it done via cell phone camera? Thanks for the good luck wishes 🙂

RBION
88 Posts

@Trillium there's something unique about a parent-child relationship that brings out the inner bear in us when we can't protect or provide for them the way we want. I'm glad you can laugh about it after the fact but in the moment it would've been awful. I was fortunate and the worst problem I had when dropping my husband off at emerg is he'd forget to call me with updates so I'd wait and worry for hours and hours….he and I had a little chat and that problem disappeared after it happened more than once! (See @supersu, as a couple we had lots of room to improve our communication over the months of dealing with cancer 😂.)

D1955
120 Posts

@RBION

We used DUO on our phones as he does not use Facebook/Messenger

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