kvolland
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Definitely another good one, Gavin. I have three big soap boxes that always get me riled up….flu shots (vaccines in general), over use of anti-bacterial products and women with heart disease especially heart attacks (it’s better now because we are changing how the medical field looks at women and heart disease).
My husband will laugh if someone gets me started on those because I can be very passionate. And of course I am adding cancer now too….educating people about cholangiocarcinoma since so few people know about it.KrisV
Good article Gavin. I push the flu shot heavily around our house even when no one had cancer. And now the rule is you have to have the flu shot to visit once flu season rolls around here (usually after the first of the year). Everyone in the house gets it. And I always encourage my patients and caregivers to get it. The only hold out is my mother in law who thinks she gets the flu from it…..very hard to do since it is an inactive virus but for some people as their immune system is ramping up and making antibodies after the vaccine may have mild flu like symptoms…..usually a low grade temp and body aches. You can only get the flu from the nasal spray which is a weakened live virus.
Can you tell it’s one of my soap boxes?
KrisV
Gigi- my husband is still with me but there is still a grief process that goes on knowing I will lose him at some point. NO ONE has the right to tell you how to grieve since every one grieves differently. Helen Kubler Ross talks about the 5 stages of grief – denial, anger, bargaining, depression and acceptance. I always thought this was pretty accurate for grief. Everyone goes through the stages, you don’t go through them in order, you can revisit a stage and go through more than one stage at a time. Everyone deals with it differently from the person who removes every trace of their loved one in days to the person who leaves things unchanged for years. What you do for you is absolutely right for you.
I write….for me mostly but I have worked on writing “our” story about this journey….and I cry….of course when no one is looking.
You may look for a local bereavement support group….most hospices have one and you don’t necessarily have to have had someone on hospice to utilize it.Hang in there and we are always here for you.
KrisV
Betsy1 –
So sorry that things seem to be going the way they are. Three years on hospice is remarkable itself. It might be time to start asking questions of Hospice about medications because as Lainy said pain medications and Ativan can change personalities greatly. Of course it may just be anger at the world and has been said you are available. I know when my husband is feeling bad he lashed out at me and out daughter – the only ones around. But that being said there are physical things that may cause problems too. If her liver is not working well then her ammonia level may be climbing….something like Lactulose may bring it down or there are meds like Haldol or Seroquel that can help (they are pretty strong anti-psychotics) but our hospice team uses them regularly in situations of agitation. Just throwing some suggestions out but definitely keep asking, the sqeaky wheel gets greased.KrisV
I honestly wish I had found this site when we first got our diagnosis rather than weeks later. Three are so many more questions that I would have asked and things I would have followed up. I feel so blessed that we lucked into the treatment that we have because it could have been so much worse. There were so many steps we did without even really knowing what was going on. And for me as a nurse that is horrible to think. I was so overwhelmed that I really shut parts of my brain off.
Thanks Percy for passing that on. It will help others and maybe even me down the road.KrisV
Lisa –
Second opinions are always the best thing and I would second having MDA do that. I have heard nothing but good about them since joining this site. And just because they say no right now does not mean it will always be no. I have always said that there are new things on the horizon constantly with medicine and sometimes the answer is just over that horizon for you. You never know.
Hang in there and keep us posted.KrisV
Well, Lisa, welcome to the family. Keep us posted on all the particulars with your CC. The itching can be expected due to the elevated bilirubin levels. Are you jaundiced too? Quite often those go hand in hand. My husband was lucky and while he looked like someone colored him with a yellow highlighter, he never got the itching even when his bilirubin levels were off the hook before his drain was placed.
We are in the Seattle area so we are getting treatment there with a wonderful surgeon and oncologist. Which center are you at? There are some really good ones out there and if we weren’t so happy here we would be doing some traveling.
KrisV
BJ –
Welcome to the site and the family that we all would prefer not to be a part of. My husband was diagnosed in May with Klatskin’s tumor – extra hepatic CC. He was luckily able to have resection but we are still doing chemo.I love the Fantastic 4. I think reflects a great sense of humor and it is really needed with this disease. We too have 4 kids only 26 to 20 and a 1 year old grandson.
We are here for you and you will find this is a wonderful resource for treatment and a great place to see what new and happening. Also a great place to vent if needed.
KrisV
Great news! I love to hear that people are responding so well to chemo and that the numbers are staying up.
KrisV
Mark –
Well, welcome to the family, not one we necessarily want to be a part of. My husband – Mark by the way – was diagnosed in May with CC. It has been a roller coaster ride so far but he is back to work again and not feeling too bad. He was able to have a resection and he is now doing chemo of gemcitabine and oxaliplatin. He’s not having a lot of side effects.As you read around in here more you will see more and more people who are living with his disease and treating more as a chronic disease than anything else. There’s a thread floating around that talks about milestones…you could probably use the search option to look for it and is had lots of stories and years of survival.
Hang in there.
KrisV
I am sorry that things have not gone smoother. Keep after the hospice nurses….keep calling and asking. There are wonderful drugs out there that can help with everything from the pain to confusion and agitation. The only trade off is of course he will sleep more. Your hospice should have a 24 hour number to call them and you should do that.
You may also research or talk to your hospice team about any local inpatient hospice. Sometimes those are available. The other thing I know that in my state our hospice patients are allowed a GIP (not sure exactly what it stands for) but it allows a patient to be admitted to the hospital and remain under hospice care. It’s for control of symptoms that are difficult to manage at home such as pain or agitation. I am not sure of you state and your insurance but you may ask.
Also if he’s covered under Medicare then he should be allowed a few respite days in a skilled nursing facility to so you can get some rest. Again in varies from state to state and if you don’t have Medicare it varies from insurance to insurance.
You should have a social worked with you hospice team you can talk to and I encourage you to do that.
Hang in there.
KrisV
You both will be in my thoughts all day tomorrow. I have been there done that so hang in there through it all. Make sure you take care of yourself while he’s in surgery. Eat and try to relax. And believe it or not Tom has the easy part….he gets to go to sleep and wake up with it over. I will keep everything crossed for you too.
KrisV
