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@mommacandy Ah, yes. I recall that you drove out of state for your oncology care for the same reasons that I do the same. I didn't realize at the time and perhaps you did not either that when your cancer diagnosis came at the same time as your best friend that you were putting your energy toward him. Of course you wanted to do that at the time. And yet there could have been all sorts of unprocessed grief you had about your own diagnosis.
I definitely know what you mean about being perceived as "the strong one". This is why I told very few people about my cancer and I still feel that way. I know that one gets support by telling others but I also think at least for me that I want to choose carefully who that will be. I told no one at my former employer (I was diagnosed the year I retired) because I knew I would get those platitudes about how strong I am and "you've got this", etc.
You are a good model for us - listen to your body and insist that you know when something does not feel right. Advocate for yourself.
Do you have a schedule for starting your treatment? Who will drive the four hours there and back with you?
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@naturegirl5 where do i even begin...
yes i was taking him to UVA for his pancreatic cancer care and actually got the phone call from my pc when i was in the office of one of his doctors there...i think it was his endocrinologist, and we drove across town to his oncologist appt where HIS oncologist asked what was going on, he told him and he asked to see the CT images.. i pulled them up on my phone, sent to his email and he looked at them on the computer and said "we need to get you in downstairs " his office was on 3rd floor and gyn oncology was on 2nd.. long story short, i applied for Tenncare in TN due to a clerical mistake i was denied However it was because of that, i was accepted at UVA for care with financial assistance really quickly probably due to his doc...which was a HUGE blessing...God at work no doubt. My mother was treated by UVA back in 88 so when they learned that, i had a geneticist put on my care team, was tested for BRCA and it came back positive for BRCA 1... so i was already going to UVA with him for his chemo, so instead of driving him we started having one of my kids most of the time driving us both.. his was on Wed mine on Thurs, but he was finishing his as i was starting mine...he had surgery, stayed up there for radiation, found out it had spread to his liver and nothing more they could do...so he essentially moved into our house for his last months on comfort care while my kids were still taking me for chemo...i was getting better while he was dying and that was hard...i went through a lot in 24...(his memorial video that i conducted is up on my channel on youtube bhale7904 is my user name for those who want to see it )
yes i'm tired of the "platitudes" especially the "you did this once you'll do it again, you're so strong, i couldn't go through what you've been through" etc while looking me dead in the face and often i look at them and say" yes you could, you don't know what you can do til you have to" or my favorite lately.. "at least i'm not Job" Yes i know i'll get through it, i'm not giving up and that is why i appreciate the comments here...because YALL understand...you've been there done that got the tshirt so to speak, so the encouragement from you all means a lot..
As for treatment, i get my port put in next thurs morning ( the crappy part is i JUST had it taken out in Dec) have to be at dr's office by 1:!5 (across the street from IR at the hospital) and then upstairs to chemo by 2:15... then we'll be coming home because my daughter who is driving this time has to be back to work Friday...i'm going Wed for acupuncture because i remember how much it helped before with the nausea etc when i got it day before chemo and then we're driving up to stay in the hotel Wed night...
i honestly believe if more people would advocate for themselves it might be a pain for the doctors but we'd get a lot better care. I did even meeting with the neuro on Monday, i told him i needed something done about the tremors, but if he felt like a different med would stop the tremors i was open to trying it and like he said, if i had a seizure while changing meds it would be better to have it in the next month or two than 3 or 4 months down the line when i was weaker from chemo...
one thing i would like everyone's opinion on is this...how can i keep my blood levels up? as some of you may remember i had to have nulesta or whatever it was called to build white blood cells quicker for the chemo...i often had to go 5 or 6 weeks between instead of 3 because i wasn't building blood fast enough and ended up having 7 units of blood from the red blood cells not reproducing quickly as well... any suggestions appreciated (as long as it doesn't involve eating things like broccoli, or any dark leafy vegetable, ain't never liked them and ain't about to start eating them at 60 lol)