Why is she in so much pain? Why won't anyone help?

I agree with Moira - you need to get hospice/palliative care team involved for your Mum.  I'm in Alberta and I know it's a bit different, province to province, but once we got my Mum's status changed to palliative, that's when we finally found pain control for her.  I think you can get the ball rolling on your mum's behalf if you can talk to a palliative care doc or nurse.  Here, it's our community health care team (we are in a small town).  My mum was in the hospital and when they released her, they put us in touch with these gals.  They were wonderful and came right to her house every day to monitor her pain meds.  Fentanyl is what finally helped her but we did have to titrate up and down until we found the right dose for her.  Morphine nearly killed her but I think we got up to 125mcg of fentanyl patches before we found the right balance for her.

I think you have a health link number you can start with in Ontario and they should be able to advise you from there.  One thing that would really help is if your mum can give you medical power of attorney (it's called Power of Attorney for Personal Care in Ontario, I just googled it) so that the doctors will talk to you about her care.  It's just a form she has to fill out.  I hate to tell you this but you may need to get her into emerg in order to get the ball rolling. 

Hugs and prayers for you.  Keep digging, keep fighting for your mum - you're doing a great job.

Margi

Sorry, Mox - have to disagree with you and remind you that the media isn't always right.  Our healthcare system is fine.  Sometimes diagnosis can take some time but having been through two cancer experiences in my family in the last 16 months, I have to say that both my mother and my husband received excellent care.  Once my husband was diagnosed, he was fast-tracked through surgery, chemo and radiation - from date of diagnosis to completion of chemo was less than six months, and it cost us nothing, monetarily.  As for my mum, she was hospitalized in January and then sent home and we had a palliative nurse from our community come to visit her every day.  When her time came to go back to hospital, they let her stay in a huge private room until a bed at a hospice became available.  Again, the only cost we had for her was for some of her medications, not all of them.  Canada's health care system works very well once you're diagnosed.  Sure, we do sometimes have long wait times for some tests, but never for life threatening issues.  Hospitals stays, surgeries and cancer treatments cost nothing.  Don't believe everything the media tells you, please.

Margi

Good to know, thanks for sharing your personal knowledge on the matter. many times the media tends to sensationalize things. Good healthcare and good insurance is very important and thankfully my mother has been able to get all of her treatments at minimal cost. We must have racked up at least $3 million dollars in medical bills over the past 12 years and 3 cancer diagnosis' and the cost to us was probably $20k over that entire period. Can't ask for much more than that. What really bothers me is the women who don't have health insurance or even worse, no family and no health insurance. What do they do? It makes my stomach churn just thinking about it. Anyway, have a nice weekend ladies!

- Paul

I agree with the Palliative Care/ Hospice plan.  I have seen it work wonders, and the providers know so much more about pain relief than GPs.  Pain relief can be quite complicated, that's why it's a specialty.  I wish your Mom relief and will pray for her.

My office closed. We were given two weeks notice.  I went to all my docs to get checked out before the two weeks were up.  Surprise!  Breast Cancer.  ALL of my treatment was paid for, as I didn't have insurance, medications, surgery, tests including MRIs, and all my other docs as well. I paid 0. I was placed on Medicaid, as I had less than a certain amount in my checking account.  I also own a home, but that wasn't a disqualifier  I also recieved state disability for the time I didn't work.  I am back at work now with insurance.  Many hospitals in the US have "compassionate" or Financial assistance programs for those who are not loaded.  I also used to work at a clinic were we charged $20/visit. It was scary without ins but it worked for me. Will wait to see what Obama care is like

Margi, actually the healthcare costs here are pretty cheap considering the total overall cost, at least if you have insurance. The $20,000 we probably paid over a 12 year period was nothing compared to the $3,000,000 or more the insurance companies paid. The way our insurance works is you have a yearly "maximum out-of-pocket cost" and once you reach that, insurance covers everything. That yearly maximum is usually around $5,000 so once that is met, you could rack up millions of dollars in treatments and have them all covered. Now if you're in the lower income brackets, you would also qualify for other government programs that usually take care of that $5k, essentially costing you nothing. I agree, it would be nice to not have pay a dime, but at the same time what you have to consider is, someone has to pay for it. In the case of Canada, it's the government... but where does the government get its money from? The taxpayers. So everyone is indirectly paying for the treatments.

We'll be implementing a similar system here in the U.S. as our universal healthcare is rolled out over the next few years and I'm hoping it works well for everyone. The thing that bothers me is how people with no insurance right now get good treatment. Sure there are programs to pretty much make sure everyone can get treatment of some sort but the good treatments, that's another story... I really think those are reserved for the people with the good insurance. Sad, but true. The hospitals are not going to run a battery of tests, and rack up tens of thousands of dollars worth of treatments if they know they're not going to be getting good money for it.

Very frustrating. I'll be happy when everyone, regardless of their class or status can get quality treatment in this country.

Oh TamTam, I am so sorry.  I know it can be very difficult in Ontario.  My mother-in-law was there and we tried (from Alberta) to get her some help with her dementia and just ran into SO much frustration and red tape trying to get through to the "authorities" that she needed way more help than she was getting.  It sucks that things can be so different, province to province here.   This was in Kingston, and because we weren't in Toronto or Ottawa, we just kept running into stumbling blocks and had to wait to get referrals to one of those cities.  Where are you located?

If I were you, I'd get on the phone and start with the oncologist and ask that you/she needs an URGENT referral to a palliative pain care doc, not just pain care - palliative.  Adding that word seems to make a huge difference.  You mentioned that your mum has tried fentanyl - do you remember what strength?  It comes in microgram strengths and are available in skin patches that she would wear for three days at a time.  It is also available in liquid form that you can get in syringes that your mum can squirt under her tongue for breakthrough pain.  When my mum first tried it, it didn't do much but then we changed the dose and it honestly did make the world of difference for her. 

I would also talk to the doc and complain about the nurse, that she's not following through with the doctor in a timelyl fashion.  Be honest with the doc and tell him what's really going on.  Your mom might not be telling him what you're seeing.  My mum did that - tried to be brave and would only really "let her hair down" with me.  She may be telling this nurse that her pain is only at a 5, say, when YOU know it's at an 11....  Any chance you can request a different nurse? 

Do you know what med they gave her in the hospital that barely touched the pain and then wore off?  Could you get a higher dose of that in a form that is administerable at home?  I've read through your posts again and can't determine where she is feeling her pain - is it gastric or bone? 

Again, I am so sorry that you and your family have to go through this (and also sorry that I was partly responsible for hijacking your thread here)...

Margi

don't let the word "palliative" scare you.  If anything, embrace it as a pain relief.  Palliative means that they know they can't cure you, but the focus changes to be one of controlling your pain and giving you the best quality of life possible.  It doesn't mean a death sentence at all, nor should it signify that anyone is giving up on anyone, least of all your mom.  It means that she IS fighting...for her right to pain freedom!  Dilaudid is hydromorphone and it was probably injected in a much higher dose than your mom has been given in pills.  Yes, fentanyl can leave her a little loopy but there does come a point where pain freedom becomes more important than clear-headedness - I know that sounds harsh, but we definitely got to that point with my mom.  They also gave her ativan, which allowed her to sleep, but it did cause her to be extremely foggy. 

One thing we tried with the fentanyl patches, because by Day 3, Mum wasn't getting the pain relief she required is that we staggered the changing of the patches.  We changed out the 100 mcg on Day Two and left the 50 on until Day Three, so that by the time it wore out, the new 100mcg patch was kicking in.  That really helped her.  Then they gave her her "sticks", fentanyl in syringes in 10 mcg for breakthrough pain.  We got into a bit of trouble with that in that she lived alone and one night decided to use ALL of her sticks but forgot she did.  That's when I realized it was time for intervention and full-time care for her. 

It's a hard, long, bumpy road, Tam without clear instructions.  The best advice I can give you is to stay strong for your Mum and advocate with her medical team whenever possible.  My heart aches for you.

I totally agree about the palliative word, TamTam. Stage 4 care is all palliative really. It doesn't mean giving up or death care. I got palliative care for my hip pain and that was when I used hospice pain management and that was over 2 years ago and I have left it well behind. It just takes a bit of a mind shift to understand and change focus. It's not death care, that is the thing to remember, just part of managing stage 4 at control levels rather than cure. I still hate the term but I understand what is truly is now and it's not giving up fighting at all. It's bringing in the correct team to keep fighting. It's hard to fight with continuing and overwhelming pain. 

Ask about pain pumps, morphine and adjusting the patches. With my hip pain I had three different types of pain meds to deal with different aspects of pain. One was for nerve pain, one for bone pain and one for something else I have forgotten. Then I had liquid morphine to add for breakthough. Most of the meds take a while to adjust to and can give side effects for a few days until the body adapts, you have to keep them a decent try. Also some of then can take a few days to build up in the system to control level. I know some people don't tolerate morphine but for me it gave no bad SEs and with the other drugs managed my pain well. I also had rads and for me that did work after a week or so. Spamgirl has a pain pump and I have heard her talk about how much it helped and she is also not on death's door. You might like to PM her and check it out. She would be more than willing to share her experiences I'm sure.

We are all so different and there is no one way to fix things. With the pain in her legs and where the cancer is, that is unusual, so the response may need to be something different. My hips gave me "referred" pain into my shin, knee and thigh. Or if it's touching nerves into the legs that could cause it. Doesn't really matter in some ways, where it is hurting or why: just fix it.

Is it possible that the hospice the hour away does have pain specialists? I know your mum has said she won't go there but she doesn't have to stay and if she can get her head around why she needs to see them maybe they could help. They can do the checking by phone and only make the occasional trip.

Ask the pain specialist and the onc. 

Then it might be time for that thinking adjustment and you just have to remind her "It's not just for dying at the hospice, it's for living well with stage 4" I had the same "Hell no" feeling but it was seriously worth it and I have moved on but I know that they are going to be part of my future and I'm more comfortable with that now.

We are thinking of you too. We hope that the palliative care helps her with her pain. We know how distressing it is to watch a loved one in pain. 

Thinking of you, 

The Mods

Oh Tammy, This doesn't sound right.

I have no help with the type of pills and amounts your mum is taking but my heart goes out to you both.

Dealing with pain is terrible and lack of sleep on top of that will be so hard to live with.

Pills can take time to work, that is true and especially ones that deal with anixiety and depression.

I wish I had more pracitcal help but this really does need medical understanding to deal with.

I can feel your hurt and frusration. I would say to keeping trying, don't give up. There must be an answer somewhere.

Is there any chance of getting a second opinion on the pain? I'm not sure why the doc said morphine wouldn't help, he may be seeing something you are not.

You say the onc thinks that most of the pain may be from nerve damage not the actual bone mets? This is only what I experienced in my case, so it is not a medical fact that applies to everyone ok?  I had pain meds for nerve pain and other meds for inflammation from the mets and then another pain med for the bone pain. That is how it was explained to me. Each pain med was best suited to a "type" of pain rather than one size fits all. 

Without knowing the names of your mum's drugs it is really hard to have even a simple idea if one might be interfering with another. We have personal experience but we are not doctors.

This needs professional sorting out. A second opinion.

Another thought, just because you need to explore outside the box too. Would looking at alternate options be something your mother would try? Some people find acupuncture helps with pain and anxiety, reflexology, massage(gentle). Sometimes it is worth looking at something other than drugs to help. Not sure if it would but at this point surely anything is worth trying.

I am so sorry that things did not get some result for you mum but please keep trying, jumping up and down and if you are not satified with the answers, keep questioning.

Will be thinking of you and hoping that soon the pills will be making an impact on the pain.

Moiira