December 29, 2013 at 11:46 pm #78123kris00jSpectator
Sloan Kettering has a satellite office in B.R. You could work with NY and go to BR for treatments, I believe.
I don’t know who you are seeing in NY, but they could possibly work with the onc in BR and give them treatment plans. Your mom would probably have to travel to NY every couple of months, but it’s an option.
As far as the moods, scanxiety is perfectly normal. As is the pessimism. As a patient, I can’t tell you what to say to your husband except to tell him at calm times that you apologize ahead of time if things get stressful.
I think the mind is a wonderful and terrible thing. It’s wonderful if you are positive and upbeat, but terrible when you worry. I got so bad with horrible back pain that I had myself getting scanned to see if the back pain was from mets to my bones! In my case, the scan came back clear, and the pain went almost completely away. The stress and my imagination had caused unbearable back pain. In my case, there was no reason for it.
I am not belittling your mom’s pain, by any means. Just saying the stress and uncertainty could be adding to it all, making her feel worse.
Praying for some good news tomorrow!December 28, 2013 at 4:19 pm #78122RandiSpectator
I think these types of emotional ups and downs are part of having and dealing with CC. I know I experience a lot of scanxiety leading up to any scan or doctors appointment. It’s often hard to express in words to those we love (and who we know are dealing with their own emotions around the cancer) what we as patients are going thru. Also, when a little issue comes up and our minds go to the worst case scenario, it is easier to lash out than to share and be told we are being pessimistic or imaging the worst without cause.
It’s little things that help. Like Lainy said, phone calls or texts are always welcome, as long as it’s not always all about cancer. I love when my girls call and just say they were thinking of me. Just having you there for doc appointments must be a comfort to your mother.
As far as the doctor having cc experience, I personally think that is essential. There are so many new things that come up around rare cancers that someone with no specific experience may not be aware of.
Wishing you good news!
-Randi-December 27, 2013 at 4:28 pm #78121darlaSpectator
I totally agree with everything Lainy has already told you. Just want you to know I am thinking of you and your family and wish you the best of luck with her scans.
Love & Hugs,
DarlaDecember 27, 2013 at 3:24 pm #78120lainySpectator
Dear Caroline when dealing with such a rare monster Cancer you want to make sure that Mom is seeing ALL ONCS or anyone having anything to do with CC has had much experience in dealing with it. I cannot recall anyone on this site not using Doctors who have had the experience. CC is still very rare and you want the best. personally I do not like this head pain and would call her ONC. The other thing is all her Doctors need to be a team and if she is seeing someone who has not treated CC that is seeing an extra Doctor who does not know it and could be detrimental. I am surprised this Doc has not told her to go to someone with CC experience. After we returned from Milwaukee where Teddy first was diagnosed (we were on vacation) we ended up with an ONC also who was a breast surgeon. She came right out and told us she is not able to treat Teddy as she did not know enough about CC. I am glad you decided to call your Mother. there is nothing like hearing your daughter’s voice. Best of luck on everything.December 27, 2013 at 2:52 pm #78119bananaf1shSpectator
Thank you so much for your reply. It really helps to know that what I’m feeling is common enough that it has its own name! I also call or text my mom at least once every day, and after reading your reply, decided to give her a call even though I had already texted her. It turns out, she’s been experiencing new pain that she hasn’t felt before, which is probably scaring her. It’s not exactly headache but related to her head region. I will have to bring this up with her surgical ONC for sure.
This brings me to a related question about her medical ONC. We like her a lot, but cc is not her specialty. In fact, her specialty is breast and gynecological cancers. Her location in Basking Ridge is very convenient for my parents, but I wonder if that should be an overriding concern right now. Maybe I can tactfully ask the surgeon in NYC, where we are going for the scans on Monday, whether or not he would recommend my mom’s continuing to see the non-cc specialist in Basking Ridge? I guess it’ll really depend on what the scans say. In any case, I will keep you posted on the appointment. Thank you again!
CarolineDecember 27, 2013 at 3:20 am #78118lainySpectator
Dear Caroline, scanxiety as we call it, is very common around here. The best advise I can give you is to lay back where Mom is concerned, don’t show her you are worried, be calm (I know easier said then done). Since I have been ill with this Ulcerative Colitis, my daughter calls me EVERY morning and asks me how I am doing and do I need anything. She is only 20 minutes from me. After that call I always feel better. Not sure of the living conditions. I don’t want anyone around me when I don’t feel good. I probably would be a bear! You might have a quiet talk with your Dad and tell him in a nice way that he needs to stop complaining especially if your Mom is around. I am more concerned about the pain over anything else. Her doctor should be told about that. Do you think the family where she is staying is trying to tell her what to do? If so they need also to be told that this CC is very rare and you appreciate them trying to help but it can only be done by the ONC and it may be contributing to Mom uneasiness along with the scan. You can also ask the ONC to give her something to take the anxiety down a little. That and the pain. I know you feel helpless and scared but all of you don’t need these extra stresses at all. Please let us know about the Scan!December 27, 2013 at 2:27 am #9306bananaf1shSpectator
I’m posing this partly to ask a question & partly to vent. My mom is scheduled for her first scan since she started her chemo treatment in late October. She’ll be meeting with her surgical oncologist who will let her know if she’s a candidate for surgery. The scan & the meeting is scheduled for Monday, 12/30.
This past week, my mom has been acting the picture of pessimism. She’s been talking to my brother about dying, and she’s been complaining to me about my brother about the pettiest things. My dad has been complaining about trivial things too (mainly about their living situation — they’re currently living with family members), and between the two of them, I feel so stressed and frustrated.
My husband and I were supposed to drive up to NJ for my mom’s appointment on Monday, and we had been planning on leaving tomorrow. But something came up with his work, and now we may have to leave on Saturday. I just told that to my mom, and I could see the disappointment in her face (we were doing FaceTime), which broke my heart. I then promptly took it out on my husband, who’s been getting the brunt of all the stress with my parents.
I wish I could say that my family is handling my mom’s illness with grace and good humor, but that hasn’t exactly been the case. It’s not bad all the time, but this is a particularly low point. I guess we are all feeling anxious about the scan and what that will reveal. My mom has also been in more pain lately, which I think is contributing to everyone feeling on edge (my mom most of all & for good reason).
Do you have advice for times like this? For one thing, I guess I can be nicer to my husband & not take out my frustrations on him. But as far as my mom is concerned, what can I do for her to lessen her anxieties? I guess I could ask her how she’s feeling & if there’s anything I can do for her….
Thank you for listening.
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