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fear with loss of confidence

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

I will try to make this as brief as possible. Hubby was dx Sept 03 stage4 colon w/ met to 6 nodes, liver & lung. Dr has lied to us we have found out and i have lost confidence in him. Not his treatment because I have researched and know that his protocol is the same as all the large cancer centers. I hate it when he sugar coats everything for hubby's benefit and then I stop and say well that is probably best cuz "what you don't know can't hurt you". ANYway.. Hubby got a copy of the last CAT and PET scan even tho the dr. said it wasn't back yet. Dr. always said that there isn't anything on the lung but according to tests there is an always has been. His CEA level went from a 6.0 before his last 6 treatments to a 6.7 and was only off for 2 weeks. He is back on 5FU,CPT11 and Lev... 6 more treatments and then we look again. Hubby is SOOO very depressed and I am frustrated and don't know what to do. I am not giving up and I don't feel he has either. There are many many questions that I would like to have answered but can't ask around dr. And I know that you are all going to say change drs. Well, that isn't an option. He is very good at what he does and is close to our home so I can be with hubby during dr. visits. No other good option at this point.
One thing I HAVE to know from you folks is if the cancer takes over the liver what happens? Is death quick and painful? what tell me something. I have NOT given up but these thoughts go thru my brain.
Thank you all in advance for your prayers, support and love. I have been here many times and feel that you are all my family. Since I found you all as a family I found a church family too that is very supportative. I am just one of those people who don't like to ask for things just want to do it myself... Ok, ok, I have babbled enough.
Awaiting you replys..
Thanks

jana11
Posts: 708
Joined: May 2004

Hi.. so sorry for all that you are going through.
If changing doctors isn't an option.... bring the note you wrote to us and read it to your doctor. Make him understand you need him to be honest and then HE needs to regain your trust.
If his response to your statement isn't satisfactory...... GET ANOTHER DOCTOR!! Or add another doctor you can see for honest responses. But make sure your husband didn't request for him to sugar coat anything.
Best of luck. Try not to worry about the speed and/or pain at the end of the battle. There are so many medicines and programs to help. Each person is different... all that matters is how your husband is now, and to fight. Death doesn't have to be horrible. There is hospice, which is wonderful and available everywhere. You need to talk to your doctor about your specific questions.

Please learn to care for yourself also. Ask for help and accept it. Makes life more enjoyable. Consider the help a deposit in the bank... you can repay it later when others need you. Right now your husband needs you.

Be strong. I will be thinking of you. jana

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

pjenks -

I second Jana's comments - see if you can get another doc. And make sure that you are straight with this doc that you expect him or her to be totally honest with you.

For now, I would urge you to focus on a cure and not on an end. If you lose sight of your goal you will slip in the battle. Don't let that happen. Stay motivated and stay focused.

Fight on.

- SpongeBob

andreae
Posts: 238
Joined: Sep 2003

Hi,

I'm sorry about the situation you are in. I can totally relate to doctor's predisposition to sugar-coating... NONE of my doctors told me they thought the primary tumor was unresectable, and just recently, my oncologist told me he wasn't too worried about the CT scan because most spots were probably from the surgery. I spoke to my surgeon today who admitted that it was probably the opposite - he missed quite a few metastases and only a couple of the spots were scar tissue. I knew the truth all along, but I hate the glossing over MDs attempt to do. I am a big girl who wants the truth. BUT I will not rant too much and I will try to put myself in their shoes for two seconds. Firstly, there are many ways to tell the truth and perhaps the doctors don't feel they are lying but rather downplaying or ommitting facts. Also, doctors know how important hope is and maybe they are giving what they feel you can handle. This, of course, is inappropriate. I have told my oncologist straight up that I want the whole truth. I still don't completely trust him so I read every single note in my file, every CT, every PET, EVERYTHING. This is my body, my treatment, my disease. I also told my doctor "What I do not ask, do not tell me because I don't want to know.". Personally, I do not want to know his guesstimation of how long I have or other statistics on metastatic disease and death rate. I think you should simply tell the doctor that you would appreciate getting the whole picture because, at times, you feel you are not getting the whole story. Why can't you ask your questions around the doctor? It is his responsibility to answer any questions you have.

Your concerns and questions about death... I completely understand. I have metastatic disease and have been fighting it since Sept. 03 with surgeries and chemotherapy. I am super positive and optomistic about my prognosis but of course I wonder sometimes. One day I just figured I would spend the day understanding the physical aspects of a cancer death. I wasn't particularly sad or worried, so that's why I decided to do it. I visited different sites and looked at symptoms and pain control and what hospice can do for the terminally ill. I have not thought about it since, but my curiosity was satisfied and I have felt better about death since then. I also talked to my doctor and I made him promise that he would tell me when things were not looking good and I also made him swear that he would be with me to the end taking care of all my symptoms and controlling pain. All this being said, I HAVE NO INTENTION OF GOING ANYWHERE. But reading a little about death and making myself comfortable with the subject... Well it just eliminates the fear. You have to get rid of the fear if you are going to focus on being well and enjoying life.

The very best of luck to both of you. Wishing you and your family a gentle 2005 and I hope you are enjoying FRIDAY:)

Hugs,
Andrea

colsie
Posts: 24
Joined: Dec 2004

It is true what the others say about not thinking about the end. But, to allay your fears, I have had 4 friends die in the last 3 years from cancer and was able to be with them very close to the time of or at their death. Two brain mets, one lung mets, one liver mets. None of them had any pain. All went in their sleep. Gone is the paranoia of over medicating with morphine and addiction. The goal is comfort for the dying which I hope for your loved one is many years down the road.
I hope this helps a bit,
Colsie

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

WARNING!!!! DO NOT READ IF YOU DO NOT WANT TO READ ABOUT DEATH> PLEASE.

dear pjenks,

you asked about death. I do not think that asking or wondering will make you drop your focus. I agree with andrea that if you get a satisfying response to your curiosity then you can move on.

We all will die. So it is not a crime to think about it or discuss it. I sure wish my sister would have discussed things before she died.

I only have my experience with her to share with you.

Since you know everyone is different then take this for what it's worth: one woman's death experience from her sister's point of view. (just like everyone's birth experience and pain tolerance and threshold is different).

Her's was not quick or painless at all. In fact it was a long roller coaster that took its toll on all of us. She did not die peacefully in her sleep without a stuggle to get there. Eventually she was drugged into a catatonic state and let go after my father was willing to accept her death....but that's another story.

Her pain increased over the months until she was crying out a lot. She was only 33 and she just had a baby (5 months before she died). Six weeks after the baby was born she did another round of chemo that made her sicker but her liver was shutting down and her abdomen was filling up with fluid so she looked 9 months preggie at all times. She would have to go to the clinic to be drained often.

She was very yellow at this point since her liver was going.

She had a pool and thankfully it was summer so she did a lot of floating around in her warm pool crying out every so often when the pain got to be too intense. She was a tough woman when it came to pain so we knew she was in bad shape.

One day she finally admitted that she could not take it much longer and sure enough two days later she started slipping away. My BIL over medicated her the next day and she ended up in the emergency room.

I will never forget what it was like when I walked into that room. No one could have prepared me so I am telling anyone here who wants to read this:

It was violent when I walked in. There she was lying naked, skinny as a holocaust cadaver with blood coming out of every orifice. She was convulsing violently and her eyes were enormously protruding and dialated. She was gasping for breath. My other sister (who is also one tough cookie) had to leave the room to vomit. It was that disturbing.

Eventually the staff got her calmed down and peaceful and catatonic. she hung on a couple more days and then died.

Sure then day she died it was peaceful but getting there was violent and nightmarish. There was nothing hollywood death scene about it.

I am sorry if anyone has read this far and is upset but I believe in telling it like it is--the whole truth.

So for me to get cancer added even more fear to the death quotient. If I get that bad I will have no problem smoking some dope.

A point to be made is that she did not want hospice and maybe this would have made a difference. I will never know and do not care to speculate.

As for your doctor not telling you the whole truth.....it is not surprising to me at all. You just happened to find out. If he is good in other ways just keep him accountable and like spnger said (I think) have him rebuild the trust. Now that you know maybe he will kinow he cannot do that again.

I wish you the best.

peace, emily who will never forget

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Dear Pjenks. I think we all suffer the very same question. There is no 2 ways around it. As painfull as it is to read of our sweet Emily's sister I for one commend Emily for her honesty...and she did warn us! My mother died if a brain tumour 5 years ago. I was unable to be with her which I am sad about but mt memories of her "as she was" before her dx comforts me in that respect. I was told she eventually succomed to pnuemonia and her breathing failed. I guess that in many ways soctors.....being human....fall into a catch 22 situation, kinda like "damned if I do, damned if I don't" when it comes to telling us the truth. Even some doctors may well be unable to determine exactly what and how much they tell us.
Ok...you have stated that we will all in probability suggest another doctor. That may not be an option for you but the current doctor needs to have a very clear picture of what you and your hubby expect.
I recently changed doctors for the very reason you have mentioned. My original doctor, no matter how much I asked could not give me straight answers.In confidence one of his fellow practitioners told me he always has a tough time dealing with his cancer patients--yet he is a wonderfull doctor!. Remember, although ethically they should fullfill your wishes by talking straight and not "sugar coating" things..they are also human.My new doctor(a lady) is very straightforward with me.
One last thing. If you are able to, try and have a talk with your church or hospital minister. They have an incredible ability to to comfort oneself....not only spiritually but also on a personal level.
We wish you both love and prayers, kanga n Jen

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