kvolland

Porter –
Just wanted to let you know that I am thinking about you. Hope that surgery goes well on Monday and in a few days you will be able to update us on how it went. I will keep you in my thoughts and prayers on Monday.

KrisV

Good story Gavin.

I agree 100% that treatment should not be based on age but on overall health.

KrisV

Hello Mel –
As you know, welcome to the family no one really wants to be a part of. You won’t find a better group of people to support you through this. Don’t ever worry about the length of your posts. Some of us can be wordy (that would be me) but we can always come up with some way to help.

I feel your pain right now. My youngest son was diagnosed with thyroid cancer the same day my husband got his CC diagnosis. It was a rather overwhelming summer to say the least. We got through it….you will too.

One thing I do know is that people want to help they just don’t know how. And think, every little chore they do is one less you or your family has to. I always suggest that you make a list of who has volunteered to help (all those people who say if you need anything let me know) and assign them a task. I had a couple people at work that cooked meals for us, one gal organized a fundraiser garage sale. My sister is a pretty good cook so she made some freezer meals but also stopped and got things like frozen lasagna.

I also was told of this website: http://www.lotsahelpinghands.com/ which allows you to set a web site where people can volunteer to help out with specific tasks you need done and post on it.

Hope this helps. Keep us posted on how things go.

KrisV

Michele –
So sorry that things are going the way they are for you. I have people ask me how I can be so strong going through what I have and I tell them because I don’t have a choice. I had to put one foot in front of the other and do what needed to be strong. They say God doesn’t give you more than you can handle but sometimes I think He overestimates how much we can take. The thing is though…..you DON’T always have to stay strong. You CAN break down and cry and rail at how unfair all of this it. I would bet that we all have at one point. I was having some pretty good (bad really) panic attacks when I went to my doc. He gave me an anti-depressant to take the edge off which has helped. I also have a counselor that I go to weekly. It helps to vent to someone. I also try to get a massage once a month.

As for your husband and his pain….there are other options out there. The first thing to do is make sure that you are keeping track of exactly how much pain med you are giving him. Hospice can use this as a guide to start a longer acting med. Morphine can be given a long-acting form called MS Contin and normally it is an oral medication but….it can be given rectally (not the favorite route but it works). The other thing with these is that if taken orally they do not breakdown in the stomach but slowly through the whole digestive tract so lead to less nausea. Also if you husband has a port ask to have it accessed and to be given IV pain medications. If he does not have a port then ask to have a PICC line placed for IV pain meds. They can not only give IV pain meds but IV anti-nausea meds.

Hope things work out for you.

KrisV

Caroline –
Sounds like you are doing exactly what she needs right now. My rule of thumb with the pain meds is that as long as you aren’t waking her up to give her pain medications that you are not giving her too much. If you have to wake her up to give her pain meds then she probably does not need them….most people will not sleep if their pain is too bad.

The other thing I suggest is using the pain scale, 0 is no pain and 10 is the worst. Have her pick a number that she does not like her pain to get higher than and take the oxycodone when her pain gets close to that number. Keep a written record of when she takes pain meds (both types), what and how much she took, her pain level before taking and her pain after about a hour. A pain diary like that will help the doctor with pain management.

Remember that the Oxycontin is a long acting pain medication and is designed to be take 2 times daily regardless of her pain level then she can take the oxycodone as needed in between (or at the same time if needed). Your doc will probably increase the Oxycontin slowly to help with the pain control. The goal is to get the bulk of her pain control with the longer-acting stuff and use the shorter acting once in a while. It can take 3-4 doses of the Oxycontin before it really kicks in and gets high enough in the blood.

Don’t worry about the fact that they may have to increase the dosage or the timing as things go on. Our bodies get used to the pain meds so they lose effectiveness.

Also remember that constipation can become as issues as she takes more pain meds. Plenty of fluids and moving around as she can. If it becomes a big issue let us know…there are lots of suggestion to help with that.

Good luck and remember that those news reports you see are sensationalized and the oxycodone/oxycontin are safe medications when taken as directed.

KrisV

Nancy –
Welcome to the family….no one ever wants to be a part of. I am sorry that so much had been heaped on you lately. Sounds like you both have been through the wringer already.

I am a Home Health nurse and work closely with our hospice team. The “Right” time for hospice is whenever you and your husband feel ready for it. The technical definition for hospice is when someone had six months or less to live under the “normal” course of the disease. That does not mean it has to be 6 months, lots of people can go longer.

Hospice changes the goals of your care. Instead of quantity of life it becomes quality of life. Their goal is to keep him comfortable and at home with all of the support that you might need. Includes nursing care, someone to help with bathing, chaplain for spirituality, social worker to address any needs or complications and some sort of complimentary therapy….ours offers aroma therapy, massage and music therapy. There are volunteers to come sit with him so you can get away.

They really are there to treat the symptoms no matter what they are rather than the disease. If he has pain they treat the pain and not worry a lot about the cause. Nausea, Shortness of breath, any of that….they treat that. The nurses are on call 24/7 so there is ALWAYS someone to talk to. If he gets too difficult to care for at home, they can help with finding the right place for him.

I applaud yours and his decision to at least talk about it at this point. And don’t ever worry about how long your posts are….some of get wordy (me at times) and we are always here to help anyway we can. I hope I answered your questions without being too blunt.

KrisV

This is interesting. Mark’s was not ICC but perihilar and we talked PET scans with our ONC…didn’t even think about if before surgery….his response was that it was not as accurate as a CT scan in Mark’s case and that he did not use it for CC for a diagnostic tool. He went off about why but he kind of lost me at one point then I couldn’t catch up.

It’s interesting reading about the conference.
Thanks for posting.

KrisV

Porter –

All sounds good to me. I would expect platelets to be low with chemo, hopefully they will pop up before surgery. You still have 10 days.

Mark had a Roux-en-Y procedure which is probably similar just opposite side of the liver….they took out the left lobe and the caudate lobe of the right along with the gall bladder, common bile duct and then pulled a piece of his small intestine up to make a new bile duct from the liver to the small intestine. They left him basically with 7 and 8. His was a longer surgery but that was due to adhesions and scarring from a previous surgery and he was 12 days in after the surgery but we had him in two days earlier for complications from his bile drain placement.

You have been in thoughts a lot as you get ready for this. I am so excited for you.

KrisV