My mum's fight against gallbladder cancer - Update October 1st

[Ember]

It's my first time posting on this board...

On June 24th I found out my mum has terminal, inoperable cancer. It's in the gallbladder and (maybe) the lymph nodes around the liver. She went for a scope last Thursday, so we should have more information by the end of the week.

Anyway, today we went out shopping and all of a sudden my mum said she had pain in her back. I brought her right home (about 20 minutes) and by the time we got here she was in agony.

She was literally writhing on her bed, moaning in pain. I was so scared! I know the doctors said there would be paid but I guess I wasn't expecting this...

I know it's selfish, but I'm only 29 - I'm not ready to be an orphan! And I don't want to have to see my mummy hurting. This isn't fair.

I'm sorry, I don't mean to be either disjointed in posting, or selfish. It's been a rough few weeks.

 

[dougsmom98]

You should not apologize for how you feel. I think we would all be scared and we would all be feeling like life isn't fair right now. Giving the journey you are on right now with your mom, you are allowed to feel anything you need to. Hang in there.

 

[luvmarypoppins]

Hugs for your mum and for you too. I am sure it is so upsetting to see your mum in so much pain and you probably feel like you are helpless to help her. I always wonder if my dh feels that way about me too. But you are there for her and that is important. Just talk to her drs. to make sure that her pain is under control. That is very important. Blessings to you both as you go on this journey together. Your mum is blessed to have you there. I am sure she knows how concerned you are for her and she sees how much you love her too.

 

[frdeb1999]

Hugs for you and your family. You can't help how you feel. You have every right to feel what you do. Just let her know that you are there for her and support her. You'll be in my thoughts and prayers.

 

[dogodisney]

Don't apologize and don't feel guilty. You are not being selfish. I completely understand. I lost my mom to cancer in '02. I was 40 at the time and I was not ready to be motherless either.

God Bless you all.

 

[Mackey Mouse]

Do not apologize for posting that here...

I would get on the phone with her doctor and find out exactly what she is taking for pain medication.... she may need some adjustments... My thoughts are this when my husband was in that much pain.....they used oxycontin for the pain, which is I think 12 hours, and if he had break through pain with that drug, he was to take oxycondone... To tell you that we almost had to sell our first born child to get oxycontin is an understatement.. I never understand why they make it so difficult for cancer patients who have inoperable tumors that cause terrible pain to get these kind of pain meds.. and yet, well we all know that some just get whatever they want for pain.

I am no expert here, although I have been at this with my husband 5 years in November, but it sounds to me that she had break through pain which needs to be managed... as the doctor explained it to me, you never want to be chasing the pain, you want to keep visualize the straight line (no pain, mostly comfort).... no jagged highs (the Pain)

One more thought, are they calling her cancer bile duct cancer or just gallbladder? At any rate, it is one of the gastro types, which pancreatic falls under. Are you going to a hospital that has a separate gastro cancer area??? Hopefully, you are getting the proper help you need for yourself and for her. The goal is no pain, when possible, for those with inoperable tumors...

I am here if you need to ask more questions...

Marsha

ps I just went back and reread your post and that the doctor said there would be pain...sure, but it needs to be managed. Is he her oncologist? because I would definitely get him on the phone and say her pain needs to be managed reasonably.....it is about quality of life, if it is inoperable, you need to give her the best quality of life she can have for now... I feel a bit angry and I do hope that he is helping you manage her pain... My God... my heart hurts for her and you.

 

[Ember]

Do not apologize for posting that here...

I would get on the phone with her doctor and find out exactly what she is taking for pain medication.... she may need some adjustments... My thoughts are this when my husband was in that much pain.....they used oxycontin for the pain, which is I think 12 hours, and if he had break through pain with that drug, he was to take oxycondone... To tell you that we almost had to sell our first born child to get oxycontin is an understatement.. I never understand why they make it so difficult for cancer patients who have inoperable tumors that cause terrible pain to get these kind of pain meds.. and yet, well we all know that some just get whatever they want for pain.

I am no expert here, although I have been at this with my husband 5 years in November, but it sounds to me that she had break through pain which needs to be managed... as the doctor explained it to me, you never want to be chasing the pain, you want to keep visualize the straight line (no pain, mostly comfort).... no jagged highs (the Pain)

One more thought, are they calling her cancer bile duct cancer or just gallbladder? At any rate, it is one of the gastro types, which pancreatic falls under. Are you going to a hospital that has a separate gastro cancer area??? Hopefully, you are getting the proper help you need for yourself and for her. The goal is no pain, when possible, for those with inoperable tumors...

I am here if you need to ask more questions...

Marsha

ps I just went back and reread your post and that the doctor said there would be pain...sure, but it needs to be managed. Is he her oncologist? because I would definitely get him on the phone and say her pain needs to be managed reasonably.....it is about quality of life, if it is inoperable, you need to give her the best quality of life she can have for now... I feel a bit angry and I do hope that he is helping you manage her pain... My God... my heart hurts for her and you.

Thank you for your post. I think part of the problem is that she only takes the medication when she feels the pain. She wants to use the least amount of medication possible to control it. This was the first time it was really bad.

We've only had the diagnosis for three weeks. (Although it feels SO much longer then that!) We're waiting on the biopsy results of the inflamed lymph nodes to see if they're cancerous as well. From there we should have more information as to treatment and pain management.

Right now she's sleeping, which she seems to do more and more often. I guess this is a good thing.

 

[snoopybabe]

Hugs and prayers for you and your mum. You being there with her is a big help. As the PP said please call her doctor. Pain management is important and they should help you with that. If they don't please find another onocoligist. My DH is battling matasized melanoma & we ended up changing doctors & his new one is a gem. Please know you and your mum are in my prayers.

 

[kdzgon]

Thank you for your post. I think part of the problem is that she only takes the medication when she feels the pain. She wants to use the least amount of medication possible to control it. This was the first time it was really bad.

We've only had the diagnosis for three weeks. (Although it feels SO much longer then that!) We're waiting on the biopsy results of the inflamed lymph nodes to see if they're cancerous as well. From there we should have more information as to treatment and pain management.

Right now she's sleeping, which she seems to do more and more often. I guess this is a good thing.

I strongly suggest you and/or your mom sit down with the doctor and review pain management. I suspect your mom is making a mistake by only taking the medication when she feels pain. When our daughter was fighting cancer, it was explained to us that you need a "baseline" of pain meds in your system at all times. The only way to effectively deal with severe chronic pain is to stay ahead of it (usually this is done by taking pain meds on a regular, routine basis whether pain is present or not), and then as others have said, deal with the "break through" pain. Unfortunately, this pain is not your "average" pain and trying to "catch up" is a bear.

Pain is partially mental as well in that your brain "remembers" the pain even when the original cause is removed - many an amputee still "feels" pain in a limb that has been removed. Maybe you can encourage your mom to take the pain meds more regularly in order to not compromise her strength that she will need to fight this battle?

No matter what she decides, hugs and prayers to you and your mom during these difficult times.

 

[teskak]

I think a part of the problem is the (mistaken) idea that people are afraid to be percieved as 'drug addicts'. My mother had terminal brain cancer, but she was worried about becoming addicted to pain meds.

The issue is to see the pain meds as no different than insulin to a diabetic or heart med etc - each patient needs thier meds to survive. While there is the pain there is no real concern about dependance. and yes, the pain meds have to go up as the body develops a tolerance.

I find some podcasts very useful, this one is called Surgery ICU rounds by a professor of surgery and director of a burn unit in Tennesee. As a person with no medical or nursing training I can still understand them, even though they are aimed at his residents. The podcast to listen to is "Pain is a four letter word".

It should solve many uncertainties

http://www.icurounds.com/

 

[mrs_hower726]

I'm so sorry to hear about your mom.

Being a caregiver to a parent with cancer is hard! I was a caregiver to my mom over the past year while she was fighting breast cancer and you're allowed to feel angry, selfish, worried, and any other emotion that exists.

I recommend that you do call the doctor and talk to them about putting her on something that she takes on a regular basis, as a PP mentioned, once the pain is really bad, it takes a lot and a long time for the pain to lessen.

Please PM me if you want to talk.

 

[Mackey Mouse]

I battle with my husband all the time about chasing the pain. Some can function quite well and manage their pain.. You do need to stay ahead of it as I said previously and I do see that others agree.....otherwise you are playing catch up and that is not good..

Hopefully you can find that balance for your Mom.. in the meantime, we are here for you.

Marsha

 

[Ember]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind.

 

[MickeyNikiNaka]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind.

I'm happy to hear that your mom will have some of the best Dr's working with her!

 

[TracyK]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind.

I am so sorry to hear about your mum. My dear mum died two years ago of this rare form of cancer. She had been accepted on the trial that you mention. Unfortunately it was not to be and she deteriorated before the treatment started. I hope and pray that your mum gets the very best treatment available and that her pain is managed well. I will remember you and your mum in my prayers

 

[Ember]

Another update:

Right now I'm feeling frustrated and angry. The oncologist that my mum saw on June 24th, the one who told her the devastating news, has done NOTHING since then. We went for the scope on July 8th, and they said it would be about a week for the results. We called and called last week, left messages, and FINALLY spoke to his nurse. He's on vacation until the 17th of August!!

Which means that he intends to just leave her, with no information or access to any. She doesn't even know what to expect, how things will progress, or what to do about anything. She should have had the results last week and been referred as needed either to a surgeon (if the lymph nodes aren't cancerous) or to the Cross Cancer Center for treatment if they are.

I mean, you don't announce to someone they're going to die and then never see them again!! Now we have this wonderful doctor in the UK and no one for him to talk to!

GRRRR!

So we're going back on Monday to the family doctor to get a referral to a new oncologist. Hopefully, we can get in to see them before we go on vacation. If not, or if it has to be, I'll cancel everything. I'm just so angry about this whole thing. My mum is scared and hurting and it seems SO irresponsible! Not to mention that apparently this oncologist didn't actually SEE the MRI. He just read the report. They hadn't even done a biopsy yet and he felt that it was right to tell my mother she was going to die.

Wish us well on Monday, I should know more by then. Or someone is getting an ear-full!

 

[safetymom]

I hope you can find a Dr. that will help you.

 

[frdeb1999]

So sorry, sometimes I think doctors are just too unattached. I don't think they should'nt have a life....but they should let you know if they will be unavailable for lengths of time. Hopefully you will find one that that can help you. to you.

 

[Mackey Mouse]

Just got to this update....I have been dealing with my own cancer demons with my husband..

OK.. I agree, bye bye to this uncaring oncologist. I have no idea where you are... in the US.. in the UK... I am thinking the US. Anyway, if there is a teaching hospital near you... a big one that deals with this cancer more than once a year, I would try to get there. My husband goes to a big hospital in Boston, Mass General, which is affiliated with Harvard Medical school.. There are times that I wonder if they are doing enough and they are one of the best and have a great gastro-cancer center. I think it is second nature to always second guess are we doing enough. I do think you are on the right road getting another oncologist, and she needs to have some quality of life here..

I do worry about healthcare reform and am thinking lately this is what doctors will be thinking, if it is operable.. if you cannot treat it and give them some time or even if you can treat, who cares.. it is only time that matters to the patient and the family and in the long run will cost more money in healthcare.. Scary times we are facing, but for now, we are not there yet and so give her some quality time, painfree..

Hugs, we are here for you..
Marsha

 

[Mskanga]

I hope that you can find another oncologist that will be more active in the treatment. Ideally an oncology group is the best because there's always someone in the office or on call.
Best of luck to you ....you're in our prayers !!