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Pat
I live in Akron and have been treated at The Cleveland Clinic for the past three years. I would love to help you navigate The Clinic in anyway I can. Please call me 330-903-6868 if you have any questions.
Lisa CraineDearest Pat –
So sorry that things have gotten to this point for you and Paul. You know that you are in good hands with Hospice now. I encourage you to utilize as much of their services as possible to give yourself as much of a break as possible…go back to being his spouse and partner and not his caregiver. You are in my thoughts and prayers.KrisV
Dear Pat,
I am sorry that things have come to this point for Paul and you. Know that we are all here for you to help and support you in any way that we can. I will keep you both in my thoughts and prayers.
Love & Hugs,
DarlaDear Pat,
I am very sorry to hear you are at this point and my heart goes out to you and you husband.
Catherine
Dear Pat,
As a patient myself, these are the posts that are hardest for me to read, but I wanted to tell you I’m so sorry that you are at this crossroad. My thoughts are with you both for peace and comfort.
Lisa
Dear Pat, I am so very sorry to read about Paul. Being that you are a Hospice Nurse you know what to expect and that the most important thing is comfort.
When Teddy reached this point we spent all our time together and in a way it was awesome. He told each new Nurse that we were on our Honeymoon. All I can say is spend your time together, let the love flow and you will have no regrets. Take each day at a time and it helps to talk about everything. Teddy was on Morphine too and it worked best or him. Wishing you and Paul a smooth journey and hope his comforts kicks in ASAP. We are here for you, you are not alone.Dreaded Update!
Eve tho I don’t post regular, I have spend every morning reading the latest posts and crying.
Today it was decided by Paul’s Onc docs that we have reached the end of the road with the chemo ( out of options as doc put it) It really hasn’t been working in some time now, the latest attempt with Folfox, was zero.
It’s a relief for me in many ways, as my heart was so heavy watching this entire process with my dear husband, who has been very brave! He wanted more time, even tho the initial prognosis was SOOO GRIM.
Now we have made the decision to bring a Hospice Home Care team in who can assist with Paul’s needs. This man has a very high tolerance for pain, however the last several days, he’s been suffering much! He has now begun Morphine, and we are hopeful to get his pain level managed soon. I spent almost 20 yrs as a Hospice Home Care Nurse Aid, I know what lies ahead, however nothing could have prepared my heart for such an INTENSE break as I have @ this time.
I will try my best to keep you informed as the days and weeks unfold. I am in dire need of support, that I know you are able to share with me as you all are traveling this journey. GOD has given me this cross and I TRUST he will equip me with the COURAGE & STRENGTH to move forward and help my beloved husband (of 35 yrs) die. My life will never be the same and I will have a void daily learning to go on alone.
Blessings to all who are also on this journey of CC
Love, Pat ~Hi there. Your story sounds so much like mine with my husband. I can hear the emotion as I read your post becuase it is how I am feeling.
All the best with the treatment and I hope to here that it all turns to the good again soon.
Also a firm believer in God and hoping for miracles.
Take careHi Pat,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear what Paul is going through. But, I am glad that you’ve joined us here as you’ve come to the best place for support and help and I know that you’ll get loads of both from everyone here.
Glad to hear that the docs have got a plan in place here and I hope that the Folfox works well. Quite a few of our members have and are on that treatment and I hope that they will be along soon to share their experiences of that with you.
If we can help in any way please just ask and we’ll do our best, and please keep coming back here and let us know how everything goes. We are here for you both.
My best wishes to you and Paul,
Gavin
Dear Pat –
Welcome to the family. You have definitely been down a road with your husband. I am with Lainy and think maybe a 2nd opinion might be in order, sometimes having a second or third set of eyes on it may help. There can never be too many ideas or suggestions. But it does sound like the docs you are working with have a plan and are adapting well.
And you have gotten some rough weather back there this winter. Hopefully once summer rolls around things will be better for you.
I would also talk to your doc about getting something for you to help with the panic and stress. I am actually on a fairly stout anti-depressant to help with the panic attacks that I was having back in August and September and a really low dose of an anti-anxiety at bedtime to help me sleep. I am sure that I would have gone crazy without those two things. I also have a gal that I see on a regular basis that I can talk to and say anything to which is nice to be able to vent to her and let out everything I keep inside.
Hang in there.KrisV
One more thing. Interesting coincidence. Not that this has anything to do with anything, but my parents who are 87 are also Pat & Paul.
Dear Pat,
I also would like to welcome you to the group. We all understand what you are going through as we have all been there in one way or another and are here to help and support you in any way that we can. Unless you have had to deal with CC personally there is no way of knowing how traumatic and exhausting it is for both the patient and the caretaker.
I also have a good friend who suffers from fibro & RA, so I know how weather can affect it.
Wishing you and Paul the best as you travel down this road no one wants to be on. Keep us updated as to how things are going.
Love & Hugs,
DarlaHi Pat,
I would like to welcome you to this site. I am very sorry to hear about your husband. This cancer seems to creep up out of nowhere. I sure wish there was a way to diagnose it in the earliest stages. There are many wonderful people on this site that are always willing to help whether it be with medical advice or to just lend a supportive shoulder. I wish you and your husband all the best.
Hugs,
-PamPat, I am sorry you had to join our family. Also, sorry to hear about Paul’s problems with Cisplatin. I hope the Folfox works well. It’s a tough road, not for the faint of heart. Faith is a wonderful thing to have. It’s kept many of us going when everything looked bleak.
I also tried Xanax, but decided it wasn’t for me. I might try it again, as this winter has been tough emotionally. Medical help has it’s good and bad points. But it did help me through some really tough patches.
Keep us informed on how the Folfox is tolerated. I hope you get some good news soon!Dear Pat, welcome to our extraordinary family but sorry to read about Paul. Cleveland Clinic I believe is good and we have a few members who go there but you might want to get a 2nd opinion just to put your mind at ease. I am so sorry you have already been riding our crazy roller coaster, CC is not for the faint of heart! May I suggest that your Doctor give you an RX for a mild anti depressant. I just went on one 2 months ago for my own medical reasons and had never taken anything before. WOW what a difference, I stopped crying
in a few days and can now handle what is being tossed at me. Without the help one just makes themselves more sick from all the stress. Wish I could send you some warmer weather from Phoenix. You have come to the right place and will get lots of advice. Please keep us posted on Paul’s progress as we truly care.
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