This has been my hardest weeks in this journey.....
I hitch honestly is no longer a journey, turning into more of a nightmare. 2 weeks ago the pain became a nightmare. My T spine, ribs arms upper ne in lava le and head hurt so bad, I literally cried 2 days. My boys wer
having help me out of bed. Hospice upped the Breakthrough meds, not even a dent, then after a few days went back to 150 on Centanyl patches, then 200mg patches 3 days later. Then dilauded went from 2 mg as needed (4-6 hrs), to 4 mg up to 6x a day. kept saying it is my mid spines and lungs, started fevers 4-5 days 99- 102. My older son and wife came Saturday and I just cried. Couldnt eat, sleep, lost 31 lbs in 5 weeks. My kids called my sister and she flew out the next day.
They pescdibed something to break up the fluid in my lungs, most likely a pneumonia but on hospice no scans but with in 3 days most of the pain was gone and the fever. I really thought this is jet, and honestly, with that amount of bone and chest pain, I was ready. Today is my best day since November and it is still no quality.
My sister goes home Wednesday morning for now. But have 2 others in the wings.some 'friends' who were not happy when I said no to company, I was seriously not out of bed other than bathroominv and bowering for 2 weeks and the headaches not good.
How do people who live in a cancer world not get that as you get to the end of this journey. The last thing some, not all of us want, are people coming, staying too long (hours), and get upset when you or a family member says no company. 3 even called first and were told not today when I was 102. still showed up!
I have been very nice, but my kids whom I am living with and they are helping me, qare also seeing it as an intrusion. It is at the point where I need to be blunt! These are not even real close friends!Please. If people are upfront enuf to say they are not up to company, respect others boundaries. The time I do have left, I want to spend with my kids and a few close friends and family!
Hugs,
Carol
Comments
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I'm so sorry you are in such
I'm so sorry you are in such pain. I pray for you, for comfort from the pain and for your family as you continue with this most horrible fight. Do as you see fit, spend time with those you love, for that's what really matters anyway. Bless you,
lisa
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Dear Carol,
Dear Carol,
How disappointing people are when dealing with a seriously ill person. I have been battling cancer for almost 8 years and know how hurtful others can be because they don't understand fully how you feel. May you feel my love and God's vast love for you. Glad you were able to vent.
Mary Jo
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The Ninja keeps on
While You continue to be so generous sharing all of this with us, and to our benefit.
You have earned the right to do as you please in every way. If someone who has been told, not today or You prefer not, and still come they are making this about them not you. Soooo feel free, not guilty, not bad to tell them not today and escort them out or shut the door before they come in.
Ninja you are a diamond sharing your sparkles and light for everyone even when you are the one who I hope is getting all the squishy stuff from your family and those you choose to be with.
Hopefully this ease-up in your pain and discomfort will continue.
All my lovin' as usual
Sherry
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Oh Carol
I'm with you on your decision to only have family and close friends with you in such a difficult time. You and your family deserve respect. I wouldn't feel guilty if I was blunt to those who just " don't get it". I hope that your pain will be minimized and that you can enjoy the company of your boys. You are never far from my thoughts. Love Surf
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Been thinking about you~
Carol, I wish people who mean well, would respect and understand how this is your journey, (not theirs) and if you are not up to company they should honor that. It's about YOU....not them! Your kids sound wonderful, and caring. I hope you have some days of pain free rest. I can only imagine how the pain has worn you down. Don't feel bad about being blunt with some folks~they surely need it!
~M
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I echo Sherry's words
Carol,
I echo everything Sherry said so beautifully. Wishing that they can control your pain better and that going forward you are comfortable and can have some quality time with your family.
Hugs,
Clementine
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You're in my thoughts and prayers
I so hope your pain can be controlled better. I am sending so many warm, good wishes your way for comfort and peace with what YOU want. You are loved by so many (me included). I love our photo together from when you were in Sacramento and I look at it often (just did as a matter of fact). Your family needs to stand firm on carrying out YOUR wishes and if that means no one except your immediate family gets to visit you, that's what it means. I can't imagine people not getting that. Forgive them, but ask your family to be firm. You know how many friends want to spend time with you, let them just tell someone neutral about that and ensure them that you will get their well wishes. I am sending all of my love to you and yours as you're dealing with this. I wish you comfort and love.
Suzanne
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Sending good thoughts
And prayers and anything good I can think of. I'm sorry you're in pain and wish that we had the collective power to ease that for you. As for insistent people, kick 'em to the curb. Better yet, have your family do it for you.
Love you,
Victoria
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Dear Carol,
You are amazing and have amazing boys that are looking after the Mom that they love very much. They just need to stay firm and others should honor your wishes. You have been on my mind and in my prayers daily. I have the CD that you sent me in my car. Every time I play it, I think of you.
Love you my friend!
xoxo
Jean
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Blessings for your family
Carol,
May your family be blessed for their choice to embrace you during this painful time. Yes, they do deserve to have you to themselves! As others have said, it is your choice. When I was diagnosed and going through treatment and remembering my Dad's fight, as we moved through treatments and needed help I kept thinking, " Where are they? Where are those people who Dad and I were there for in their lives of turmoil?" In the end, I can't help thinking that I was glad to be there with him and glad to have him by myself. There were things that transpired between us that others will never have. In my own treatment now, I find I don't have time for those from whom I did not hear in over 12 months. Maybe some showed up once, why? To see what a suffering cancer patient really looks like????? Surround yourself with those you love and show the others the door.
peace and prayers,
Kathy
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Kathy, I sometimes think that is what some people are doing
Is seeing if we look like the people in the movies. Guess what! We look normal. I keep trying to think that they are just without a clue, but honestly, ignorance is probably closer.
So I have only been responding now to those who have been around, and have told a few that 15-20minutes max. That is because I am worn out by then. Yesterday, I slept thru the hospicenurse visit. Appt was 2-230, she sent a text stating it would be 345-4p. I had already fallen asleep. She hasn't been on time forever, but honestly, I left the house for the first time Wednesday since Christmas eve and I was totally worn out all week. So I sent her an apology. A Podiatrist came and trimmed my nails Thursday, they sent someone to cut my hair Friday at 1pand the nurse was scheduled for after.
This has become a job. But I fell asleep at 2p and woke up for 30 minutes at 9 ish, then slept today until 5pm. Now it is bedtime again. All I will say is enjoy as much as you can, it gets harder every day!
Hugs and thanks for letting me vent!
Hugs,
Carol
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Sending love & peace....
....you are a strong inspiration - the words from a poem I know remind me of your fire & will . "do not go gentle into that good night"
Sending the gentlest hugs to hold you close
much love,
Jenny
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HUGS AND PIXIE DUST ON THE
HUGS AND PIXIE DUST ON THE WAY....
DENISE
0
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