Do what feels right to you, as far as your medical care is concerned. :yes:
I post so you’ll know I’m thinking of you, but that doesn’t mean you need to respond.
I understand that there will be many times that you don’t feel up to writing. No pressure, no sweat. 
No one expects you to reply to anything, another one posting just to let you know that a random stranger you don’t know is thinking of you.
Go with your gut, get as much information as you can on every decision, and go with your gut…you didn’t choose the journey, but you sure get to drive this truck!
Adding my hugs to you and totally agree with KBC, you are the driver. Hope the evening brings you rest before your appointment tomorrow.
Kim, you will ultimately decide what to do, and no one of us is walking your path.
My DH had a port that had to be removed, and he received many - as in more than 10 IIRC - rounds of chemo with a PICC line. It was unconventional, and at first the oncologist and his nursing staff couln’t believe it could be done. But we did it, successfully.
Please explore that as a viable option to the port, especially if you are obsessive, and it sounds like you are.
They didn’t want to do it because a PICC line is not secured. But DH and I were extremely careful with it, flushed it without fail as we were told to do, and it did not move. He had it over a year. It’s doable. Not conventional, but doable.
Please let me know if you want more details. I’m sure our oncologist would be willing to talk to your oncologist.
I’ve got you in my thoughts. Daily. Take care.
Thinking of you…
a friend had the port near the collar bone. procedure was super quick and easy and she could shower and go about daily life with it with no issues. it does give me the wigglies thinking about it but she definitely preferred that over the other options since it was so routine and “easy” as far as treatment and other things go
lots of jingles for you
Sorry for the dark days, but YES to massages and fudge! You will (have already) find that people have a range of reactions to cancer. Some of the people I assumed would be supportive and available…nope! Others (THIS fabulous community, people IRL I would never have guessed) were absolutely terrific. But it’s definitely NOT you! People just have their own experiences and reactions!!
Glad you are seeing the oncologist to talk about options. DH got a port the first go round but not the second, which I know he REALLY regretted. His veins were just shot and trying to draw blood was a nightmare. His only complaint that I remember when he had the port was that he couldn’t dive!
But you definitely need to be comfortable with whatever option you and your doc come up with. That’s pretty much the ONLY variable!!
Sending you lots of jingles and hugs and hope it’s a lovely day!!!
I think of you a lot!
That little itch behind your ears?
That is everyone here jingling like mad for you.
Thinking of you…yeah, I understand feeling the heebie-jeebies over a port! Hopefully the medical staff is respectful of your decisions.
Re: “real-life” friends avoiding you. It’s not you at all. It’s the cancer. People get funny over serious diseases; some don’t like the reminder of mortality and when it happens to someone they know well, as opposed to “other people”, it can freak them out a little. I suspect there are others who don’t know how to act around you so they’re avoiding you altogether. I am sure all of these friends are feeling a measure of guilt as well.
Hugs. It’s a tough time for you and being down is certainly understandable.
Well then it will be too bad for them, because by the time they come around, I will be dead.
Like I said, I am over it. Just cannot imagine ever being that way with these people if the tables were turned.
Truthfully guys sometimes I just want to be done with this. And no I am not depressed, just done.
There is no way to qualify the words or actions of humans around you during such a level of ‘Serious’
Often one finds strangers are more supportive and kind
Friends and family members are ‘freaked’ and scared …and react inappropriately
Surround yourself with nice …support people nurses … support groups …animals
Avoid the toxic …regardless of why they can’t handle the situation …
*If anyone / someone makes your life more difficult … turn … walk away …tune out their noise.
Please take extra care of yourself
Be Careful
Be Safe
Sometimes all one can do is focus on getting through half day …one half day at a time
BREATHE …Look around … BREATHE
(( Hugs))
JINGLES & AO
Your body, your life, your decision. Follow the path that you feel is best for you. We are all here to give you what support we can. Keep looking forward. Expect the bad days, but look for the good in every day. Thinking of you every single day, Kim.
YES!! What a lovely post! If there is one thing serious illness can do, it can give us permission to walk away from the toxic!!! Walk away from people who don’t lift you in some way!! (and go find fudge and massages!!!
Just wanted to send you lots of love and supportive thoughts, I know people can be disappointing, but they can also be superstars. And you can be very surprised at who falls into which category.
Take the best, forget the rest xx
I ve been thinking of you all day. I wish you lived close, I’d take you for a short jaunt in my cart with my mini. We could talk horses.
Hope you are OK this afternoon.
What a lovely thing!! thank you!
Thank you all. I am really running out of steam.
((((Kim))))
I hope tomorrow is a brighter and better day. You are a class act and I hope you know it.
Here’s to many more sunrises!
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I was talking cancer to my farrier yesterday. He has a friend that was stage 4 colon/rectal cancer for 6 months. It made me think of you.
I know you have decided to not do the port. DH does not have a port for his chemo. He has a hemodialysis port in his chest already for dialysis. It is way funkier than a chemo port. They have not had problems finding is veins and he was scheduled for 8 weeks. Tomorrow is scheduled to be his last day then a bone marrow biopsy on 5/30. If he has to have more chemo we may talk about a chemo port. The installation of the dialysis port was an easy outpatient procedure. He has 2 external access points. He came through it very easily and has had no problems with it.
I am a member of a couple of Multiple Myeloma Facebook boards. Many of the patients have ports and love them. If you do the FB thing see if you can join one for your type of cancer. It is amazing the support and information that the MM boards have. I would assume it is the same for colon or rectal cancer. They have many first hand coping strategies both mental and things like Claritin during the prep for stem cell transplant.
I am also a member of an MM caregiver board. If your Ex does FB he may be able to find a caregiver one. Caregivers have our own fears and stresses that we don’t want to share with the patient/our loved one.
You can always try an IV access and if that doesn’t work change your mind on the port. DH is limited to the left arm IV access only. Due to the dialysis they really want to preserve the veins in his right arm just in case they need to change his chest dialysis port to an arm graft. They want an arm free of scar tissue from the blood draws and IV chemo. His cancer center has been able to find various points on his left arm to give him the IV that also allows him to work on his work laptop while he gets chemo.
You are allowed to change you mind as treatment goes on.
FYI my farrier was suggesting to look into fasting (1 meal per day) for DH. It has shown some promise in mice in helping with chemo.
Many of the patients on the MM boards use CBD oil or smoke a little for pain control. Some doctors are more open than others. DH’s does not want him to eat brownies or smoke it due to the possible fungus contamination. We did not discuss CBD oil. Bone pain can be a part of the MM cycle so it the CBD oils, smoking and edibles seem relatively common with these patients. Thankfully DH does not have any of the bone pain. Our local hospital has a cancer center and they offer free massage and Reiki to patients and caregivers. Look into alternate therapies to help you feel better.
Thinking of you and hope your day is a good one.
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