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Camul aka Carol, Update?

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Carol,

How is your infection doing?  Been thinking of you... Hope you will be able to make your trip.   If you can.... we want to hear from you.

Best,

Doris

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

bumped

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

How you doing,  dear one?   Hoping, and praying that you might be on a vacation ..

Please update us when you can.   We are thinking about you.

 

Vicki Sam

New Flower
Posts: 3993
Joined: Aug 2009

Carol,

 I hope you are feeling better.Sending a cyber hug to you

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

Thinking and praying for you!!!

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Carol is on her trip and I expect we will hear from her when she returns.

 

Doris

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

Thank you so much for the update on Carol ...  I was getting worried out of my mind!

So happy to hear that Carol - is off on vacation.

 

Vicki Sam

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

I also hope Carol is having a wonderful time visiting her sibblings.

 

Doris

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

I see a few postings from you ...   I would truly LOVE to hear .. HOW you are DOING ..  dear, dear Carol.

 

Vicki Sam

aisling8's picture
aisling8
Posts: 1260
Joined: Feb 2010

Normally I mind my own business and let people tell their own stories, but so many are worried about our Carol, I thought I'd let you know I heard from her last week. She's on her trip, saw family in Southern California and was headed up north to see more family in Northern California. She said it's been a good trip, but she's -- her words -- wiped. I don't know when she's headed home.

 

I'm glad she got to go. I wish I could have seen her this trip, but it wasn't in the cards.

 

And Carol, pardon me for talking me about you:)

 

xoxo

Victoria

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Thank you Victoria for the update.

Appreciate it,

 

Doris

 

New Flower
Posts: 3993
Joined: Aug 2009

I am glad hear that Carol is enjoying her trip

camul's picture
camul
Posts: 2042
Joined: Dec 2010

I did not go up north. My sister came ther and I was able to se another sister and sil, as well as neices and nephews, thanks to my brother. It was nice, weather was perfect. was there for 4 days. I ended up with vertigo Wed am and was scheduled to leave on Friday so I was able to get meds b4 I left and will have it rechecked Tthis Monday. Was pretty dizzy the whole trip, and very tired but am glad I went.
Had a dr appt with the pain dr an hour after getting back Wednesday morning and he was pressing me on Hospice again. I am not ready. I asked him if I was on hospice when my chest/ribs were so tight would hospice have sent me for a ct scan? He said the goal is to make my life better and thus increase meds.... So my question to this was... then if no ct scan was done, couldn't I have died if more of the blood clot would have broken off? and as the doctor told me that without treatment, 5 days in the hospital while getting shots in stomach and coumadin to thin my blood, it could kill me. So had I been on hospice then and not treated? then I could have died from the clots?
He said I am assuming that I could have died and I said no according to your partner who treated me, untreated blood clots could result in death, and there are 3 clots in my right lung.
He was very defensive when I said I wanted to check with 2 hospices besides the one that he is the medical director for.

camul's picture
camul
Posts: 2042
Joined: Dec 2010

Because I am no longer on chemo, I should be on hospice. But also said that for the most part I couldnt get treatment if something is cancer related. such as the vertigo, even though the onco says here is a growth or ulcer on eardrumb that is bleeding that he thinks an ent can treat, whereas pain dr. says he would treat he syptoms.
I feel that since I went from ins to medicare, both the pain dr
and onco are pushing hospice and I do not feel ready to give up option of treatment yet. I know hospice is a good thing, I just feel it is too soon to make that decision.

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Hi Carol,

Glad you had a nice visit with your family.  

Your not ready for hospice but how about Palliative Care as an alternative.  I believe you can still have treatment on palliative care to help you if you want as it and that is different than hospice care.  

My father's doctor had suggested hospice care many times to him as he had congestive heart failure and there was little the medical profession could do for him.  He ignored their suggestion for over several years, often learning to manage his disease himself.  Finally he was ready when he went into a coma and then came out of it.  He was tired and made the decision when he was ready on his terms.  

Your not ready for hospice and you will know when it is the right time.  However, why not look into palliative care for the time being.

Wishing you the best with your decision,

Doris

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

He was very defensive when I said I wanted to check with 2 hospices besides the one that he is the medical director for.

Your oncologist seems to have a motive and certainly should not be suggesting his hospice in your situation.

Best,

Doris

New Flower
Posts: 3993
Joined: Aug 2009

Carol, it is so nice to hear from you. I am very sorry that you have such discussions and feel lack of medical management for your conditions. I admire your  courage and ability to take control. It is very hard, however worth to look for answers and hope.

i attended a lecture for survivors two years ago and learn a little about Palliative Care please check it out. It was my understanding that Palliative care is more than pain management. Unfortunately in many cases we have to advocate for ourselves becoming case manager or lead our medical teams to decisions which is best for us. If your insurance plan allows please check with ear specialist, vertigo is caused by several events and can be treated. Please work with your primary physician, PCP can order various test, if oncologist is reluctant to do so.

as far as hospice if you are not ready it is your choice, your right to make decision for yourself.

sending you hugs and strengths

Olga

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

'Palliative Care' here in Southern California, for the past 4 months.  Service is available 24 hours a day, 7 days a week.  RN comes to her home 2 to 3 times per week.  Blood drawls, xrays are done in home.  We had to call service at midnight on Friday night - RN arrived within 15 minutes - and stayed 3 hours.  

Doctor visits are 1 time per month, in home - visits increased as necessary. 

Just my 2 cents.

 

 

Vicki Sam

camul's picture
camul
Posts: 2042
Joined: Dec 2010

Sounds like with palliative care I am not giving up my medical to hospice so I would be able to go to a hospital or doctor if needed. Giving up medical with the assumption that most everything will be cancer related scares me as something that could be treated may not be, and after reading about it, one of the biggest disadvantages of going on hospice too soon is that this becomes a real possibility.
I am for hospice just not yet!
Thanks everyone for good info. I was beginning to believe that maybe I was just in denial about where I am, but I have heard from so many asking why I am going on hospice while I am still functioning this well! And other than the vertigo, feeling better than I have for quite a while.
I figured I would be tired for a while after chemo, i did not expect to feel like I did before but I am now feeling well enough that I am interested in participating in activities, meeting with friends and family etc.

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

Carol you are amazing!  You will know when it is time.  Palliative care sounds like a great option too.  I was soooo happy to see your post!  Big hugs!!!!

camul's picture
camul
Posts: 2042
Joined: Dec 2010

I have not been able to do mich on here. Hopefully they will do something with the servers. I am holding off. Onc didnt seem surprized it is the pain management one who is responding in not such a good manner. But it is my life and my choice. Have a lot of pain in right hip area and on Thurs am. I woke up and the patch that I put on Wed am was loose and dry, so I changed it. Got nauseated and started vomiting about 15 minutes later, was so drugged. Guess if it happens again, I go without a patch for while b4 popping on a new one! amazing to me that anyone would want to feel that out of it intentially!
Figure I will know when it is time for hospice thouh. Just wish I wasnt so wotn out all the time. I feel better than when I was on chemo but was hoping I would get some energy back. Still get dizzy but only if I bend down or turn my head quickly. Last scan 3 weeks ago shows brain is clear.... so I just have to deal withHope everyone else is doing ok.
Hugs,
Carol

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Oh Carol,  have you looked into what Palliative Care could do for you on pain management?

Best,

Doris

Christmas Girl's picture
Christmas Girl
Posts: 3644
Joined: Apr 2009

You've already endured so much... still are... and are facing difficult decisions and choices. Want you to know I truly admire your spirit!

You'll do what's right for you, on your terms, when you're ready. And not until. In the meantime, I do hope you get some reliable pain relief without the horrid side effects.

Will keep you close within hopeful thoughts & prayer.

Kind regards, Susan

mommaellen's picture
mommaellen
Posts: 188
Joined: Nov 2012

I know that you will make the decision that is right for you.  I will be sending continued prayers and good thoughts to you.

 

HUGS TO YOU.

 

Mommaellen

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