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Really rough day today

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Whoa. what a day.
I'll post more tomorrow if anyone is interested, but today was really tough. What should have been a routine sigmoidoscopy turned into an 8-hour ordeal. I've never seen a person in so much pain, even though he's had multiple kidney stones back in the pre-cancer days. It's now 11:30 pm and I'm really beat, but can't quite get to sleep yet, so I logged in here. It helps just to see your faces and know that all of you are in this too and we're all here for each other.

Despite what happened today, I still have this feeling of gratitude - most of all for John, for our families and friends, the doctors and medical staff, and all of you guys who log on here and try to support one another. Thoreau said something along the lines of "when it gets really dark you can see the stars."

My best to each of you who reads this,
Adrian

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Adrian,
I'm awake still as Hawaii is 3 hours earlier than California. So sorry the day was so hard for both of you. I find it almost unbearable to see my loved ones in pain. I want to take it all away and I feel so helpless at times. John is so fortunate to have you and you to have him. I love your Thoreau quote..... there are many stars in our lives as well and they are truly shining right now.

Saying a prayer for you right now.

With aloha,
Kathleen

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Thanks, Kathleen! We'll take all the prayers we can get and pay them back in kind -
I think you and I are in the same boat as caregivers. Today I'm feeling like I should have been able to do more for him. I think they really screwed up, but I wasn't in the room when it was going on, and you know... Anyway, thanks for writing back so quickly - I hope things are going well for you and Dick. He and John are the same age apparently...

Holding you both in the light,
Adrian

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I am so sorry to hear this.

I'm up for my 2AM medication and blogging spell. I knew something was up for you guys yesterday and am so sorry to hear it went so bad.

I don't think there is anything that comes close to the kind of helplessness we feel when our loved ones are suffering unbearable pain.

Deep peace of the star-filled night to you...

Rob; in Van

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Adrian,

From what I have read in your posts, you are an excellent caregiver and John is lucky to have you. I know it's hard when you feel helpless to make everything better. It really is harder on you as a caregiver, but know you are making a difference for John, even when you don't think you are. I hope today is abetter day for the both of you.

Don

tootsie1's picture
tootsie1
Posts: 5061
Joined: Feb 2008

Adrian,

I'm sorry it was so rough for you and especially for John today. I will pray for much better days!

*hugs*
Gail

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

So sorry that you are going through such an ordeal and that John was in so much pain. You having to watch him in pain has to be so emotionally tough on you and draining. I am praying that he gets better soon and both of you will have some comfort. Let us know how he is feeling today (and you too).

Kim

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

. ..adrian sending positive thoughts & prayers your way hugs to you sonia

Trapbear's picture
Trapbear
Posts: 109
Joined: Sep 2009

HI Adrian,
Sorry to hear about your ordeal. Hang in there, I am thinking of you guys,
Bill

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Dear Kathleen, Rob, Don, Gail, Kim, Sonia and Bill,

Thanks so much to each of you for writing. It really helps. Today is much better. The excruciating pain he had after the sig is gone and we're both feeling good about things.

The short story is that we live about 45 miles from our healthcare facility, and we were having a fierce storm in California yesterday. Trees were down on the freeway, we passed lots of accidents (one fatal) and it was hard to control the car in the gusty winds. We made two trips down and back. The amount of air the introduced to his intestines for the sigmoidoscopy put him in what he described as the worst pain he's ever been in. He's had several kidney stones and it was clear to me that this was much worse. I can't believe they would subject a person to that (part of it was to get 3 tissue samples from the anastomosis to biopsy) but I wasn't in the room when they did it. Next time, I will be. However we got it under control before we left in the evening.

We talked to his oncologist yesterday evening (she stopped by after hearing about his situation) about stopping the chemo which is so hard on him. She reminded us that we were only doing it to manage pain and now that the Fentanyl and MS Contin have brought the pain down, there's no reason to keep doing the chemo. It won't have an effect on slowing the disease. So we're both feeling good about that, and I asked her about the Dendritic Cell Immunotherapy I had been reading about and while she had heard of it, she didn't know much about it and promised to look into it and get back to us. I know it wouldn't do anything for his sacral tumor, but it could slow or even prevent the spread to other parts of his body. And, unlike almost every other cancer treatment, it's painless and has no side effects. go figure.

So we're feeling good. He was supposed to have chemo this coming Thursday, but since he's not, we can go to a concert on Friday night and enjoy ourselves.

Thanks for all your wonderful comments - it really helps - other people can empathize but you guys really know. Thank You.

with love,
Adrian

PS I posted a photo of us on top of Mt. Katahdin in Maine on my "expressions" page. During his first round of chemo in '07/08 he held onto the image of us climbing to the top of that mountain to get him through. Much to my surprise, two months after chemo ended we did just that! It was more exhilarating than words can express. (He grew the beard during chemo but shaved it off afterwards - one of the only people I know who got more hair during chemo)

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I hope you have a wonderful time at the concert. You are both lucky to have each other. Glad to hear today is a better day. Petrina

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

What a great picture! Truly an Eastern Mountain worthy of being called a mountain!! :) :) We are so spoiled in BC and California!

After my first go round with this beast (Colon Rx, Liver Rx, Chemo) I came out all clear... NED. We sold the town house and took the girls on an awesome trip to the Maritimes, New York City, and Cape Cod. Very memorable milestone.

So glad to hear that the pain is being better managed and that the chemo question is resolved.

HYITL... Rob; in Van

CanadaSue's picture
CanadaSue
Posts: 340
Joined: Apr 2006

Glad to hear today is going much better!

I know as a caregiver it is hard to watch our spouses and partners go thru this hell!

You are both in my thoughts and prayers.

HUGS,

Sue

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm praying that today is a much better day for both of you. It just broke my heart to think of the pain John endured. I know it must tear you apart, Adrian.

God bless you both, my friends,
Diane

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Dear Petrina, Sue and Diane,

Thanks for your kind responses! Today is much better and we're both feeling good about getting on with life! I hope today is a good one for each of you as well!

Warmly,
Adrian

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi Adrian!

I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi Adrian!

I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi Adrian!

I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi Adrian!

I'm sorry John had such a bad time. He sure is lucky to have such a wonderful partner by his side. Being a caregiver to someone you love, and to watch them go through all this, and I'm sure you feel helpless, but you are NOT. Just being there for John, and being supportive to him is what he needs. My husband had a bad day yesterday, I will write a post on it, because I think sometimes we really don't realize what the caregivers really go through! My prayers are with you and John. Keep us updated!
Your friend
karyn

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Thanks, Karyn!
Most of the time I don't feel helpless. Years ago someone suggested to me that you can only feel helpless in a situation where you can do something and don't. If you're doing everything you can, then you're not helpless. I try to keep that in mind, and that there are a lot of things that nobody can do anything about.

I'm sorry your husband had a rough time of it yesterday. Does he have enough support around him? John and I used to banter about which one of it had it harder - each insisting that it was harder for the other one. I think it's harder for the patient, he thinks it's harder for the caregiver. So after playfully arguing that one out, we agreed to disagree. Or agree that it's hard for each of us but in different ways.

Anyway - I think about you guys often and hope your pain isn't too bad.

take care -
Adrian

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Adrian,

I honestly think it's harder on good caregivers. I take my hat off to them--to you.

When my sister was sick, though I wasn't her primary caregiver, I helped bathe her and took her shopping when she felt up to it. It broke my heart to see her waste away to nothing when I pulled up her Depends after her bath and to see the stares in public when I took her out. It was so hard to hear her painful moans and groans knowing I couldn't do anything to ease her physical pain but just tried to love on her. Her courage was beyond measure. Then we're the ones left behind to deal with our loss and quite frankly, it sucks.

When I got my dx I felt empowered to take action and be in control of what I could and just accept what I couldn't. I felt it was much easier being the patient than the caretaker. Now granted, I never got to the state that my sister got and wasn't dying per se and after my surgery I wasn't in any pain at all. Before yes, incredible pain, but not after. So maybe that part's worse. But the day to day, I felt worse for my family and how hard it was on them to have me "sick" and maybe not be here for them.

((((CAREGIVERS))))

Just my experience for what it's worth.

peace, emily

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

I think something was in the air for a bad day yesterday.(does that make sense?)You are a wonderful caregiver and you both are lucky to have one another. My hubby is my rock and I need that soooo badly in my life. So, enjoy one another today and I pray for better days for both of you!! God Bless you, Patti

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I agree that something was in the air yesterday. After I had gone to get my PICC line dressing changed I ran into a friend who I havent seen in 5 weeks or so. She stated that I'm sure loosing weight with this cancer thing. I talked with her for awhile then went home and lost it. I cryed for awhile, called my brother and talked to him some. The only one home was my 15 year old son. He seen me crying in my room and came in and sat down beside me. He didn't say anything. He didn't need to. He was just their for me without any need to ask. This came out of a 15 year old boy. After a while I got it together and came down and read Craigs post "Lets just talk" for the 3rd time (Craig you are a brave man and you need to hurry up and get back on the board because we need you)and felt much better. So maybe something WAS in the air yesterday.

Brooks

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

So sorry to hear of his bad day, and hope that he feels better every day. I know that I feel much worse for what my husband is going through with my having cancer than what I am undergoing with the chemo. Just wanted to say way to go on going up Katadin. I'm from Maine and I love Baxter State park. Didn't go this year due to the chemo and such a long distance from medical care, but I plan on being there in 2010! Take Care and my prayers are with both of you.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

sending you lots of {{love and healing}}

Love, Leslie

grammadebbie's picture
grammadebbie
Posts: 456
Joined: Jun 2009

So Sorry you guys are going thru this. Uncontrolled pain is horrible. Even if you would have been in the procedure chances are they wouldn't have listened to you. My husband almost got kicked out the emergency room when they wouldn't control my pain. My pain management doctor gave me his cell # so I will never have to go thru that again. When pain is involved were kinda at the mercy of the doctor. If you don't fall within the norms it's just too bad.

Glad things are getting better. I will be praying for you.

Blessings to you both,

Debbie (gramma)

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Thank you all for offering Adrian such fine and loving support. That was a bad day. Even in the midst of all that pain I knew how hard it was for Adrian. All of you are correct: Adrian helps me so much, even by just being with me. And he does so much more than that. As he describes, we have a playful banter about which of us has the harder time and neither of us is going to win that argument.

Just before I checked into this forum, I received an email from a friend who told me that the director of the program I work for described me as "her hero." I responded that if I have a hero, he is Adrian.

All of you caregivers, YOU ARE HEROIC! My unbounded appreciation for all you do for all of us.

John

dorookie
Posts: 1736
Joined: Jul 2007

Without my partner(Wendy) I would have been so lost, she takes such great care of me, now and druing my cancer journey. She is my angel and I tell her that all the time. I have seen the pain in her eyes just watching me having to go through chemo, radiation, surgeries, and then to have to do it all over again. She stuck by myside and continues to do so, she is MY HERO!

God Bless
Beth

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...Did they not give him any pain medicine for his procedure?? I know you caregivers have it worse then the patient for sure, I couldn't watch my hubby or kids going through what I'm going, I'm glad it is me and not them.

I am so sorry to hear about John, but soooo glad he is feeling better today, and you are going out tomorrow! I hope you both have a blast, and he is in good spirits, hopefully that onc will look more into what can be done as well, there is so much out there, you only hope that you're a good enough candidate for their therapies!

Hugssss to you and John! you are both in my thoughts and prayers :)

~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Adrian (and John),

I'm sorry that so much pain was experienced during the procedure yesterday. After not getting any pain meds or "twilight sleep" meds during my first sigmoidoscopy and having a lot of pain during it, I requested ahead of time to get it the next time & they did accomodate me. I'm not sure why, but at least where I go, they say it's standard to give pain meds/twilight sleep during full colonoscopies but not during sigmoidoscopies. The next sigmoidoscopy I had, I requested and had the pain meds and it made all the difference! I most recently had a full colonoscopy (the first full one since my diagnosis 2 yrs ago), had the meds and experienced no pain or bloating this time.

Things will get better- you guys hang in there.

Lisa

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