How fast it all changed.

ronandannette

I gave myself this tag and I "Like" myself too!
Joined
May 4, 2006
...It was helpful knowing what supports they will have in place. They can requisition equipment if we need for home care, support workers for relief and one of the bigger worries - financial guidance for any programs that might be available. DH is self employed and I help him with his business, but can't do the main function - it's specialised knowledge that he has. I will have to go back to work at some point but there are critical illness benefits for him and to a lesser degree - caregiver benefits for me...

Thank you all again for your prayers, thoughts and responses!
:grouphug:Oh Hon, that is such a tough one - I'm assuming you didn't have any kind of private short or long term disability insurance? Praying for your provision - it's the last thing you need to be worrying about now.
I second the recommendation for MD Anderson, in Houston. They should be back up and running 100% by now from the hurricane damage they got. My older daughter works there, and it's pretty much the cutting edge for cancer treatment.
The OP is Canadian and likely would never have access to that facility. We (by-and-large) have no choice of where we're treated for any given thing; there's usually one facility in every major centre that specializes and we go where ever we're sent. (Some of us, living in remote regions, may have their access to the best treatments limited due to proximity.)
 

DisneyOma

DIS Veteran
Joined
Jul 27, 2015
The OP is Canadian and likely would never have access to that facility. We (by-and-large) have no choice of where we're treated for any given thing; there's usually one facility in every major centre that specializes and we go where ever we're sent. (Some of us, living in remote regions, may have their access to the best treatments limited due to proximity.)
I thought Canadians traveled to the US for healthcare services that were not available (or backlogged) all the time? Children's Hospital in Boston is building an entire new wing to attract international patients. Hopefully, if it is necessary, the OP's spouse can be sent wherever needed.
 

ronandannette

I gave myself this tag and I "Like" myself too!
Joined
May 4, 2006
I thought Canadians traveled to the US for healthcare services that were not available (or backlogged) all the time? Children's Hospital in Boston is building an entire new wing to attract international patients. Hopefully, if it is necessary, the OP's spouse can be sent wherever needed.
No, not all the time at all. Firstly, we can't purchase any type of 3rd party insurance that would pay the fees; some people do go at their own expense but it wouldn't be common for the average person to have the tens or hundreds of thousand dollars necessary. In certain (rather rare) circumstances a Provincial Health Authority will approve treatment at facilities in other provinces or the States but that is at their discretion - not at all just at the request of the patient. There are actually some instances where paying for the private provision of your own health services is actually illegal - it's complicated.
 
  • rodeo65

    DIS Veteran
    Joined
    Feb 1, 2009
    Does he have an arrythmia? Or is he just tachycardic? Treatment can be different for each.

    How fast is his heart rate when he stands? Is he symptomatic when his heart is going fast?

    Have they had a Cardiologist come and consult on his case? And recommend treatment? If not, they should.

    Saying prayers for your family.
    Tachycardic - resting betwen 108-122, standing approx 140+ He was prescribed 5mg of Bisoprolol as of this afternoon. No cardiologist to my knowledge, although I haven't been in since 4pm yesterday. He only mentioned the internist who has been on the floor since Friday.

    I am hoping our family doctor can start pulling the pieces together for us this week. He was on vacation last week, but if he's back I expect he will be getting all reports from all the scans and blood work and can give us an overhead of what we're dealing with. I'll be calling them tomorrow when they open and trying to get a follow up to check what's going on with me and this stupid fever and when I can get back into his room and then find out what reports he's been given and what he can tell me. Right now it's very scattered and we've been getting the best information from his nurse this weekend. She's remarkable!

    :grouphug:Oh Hon, that is such a tough one - I'm assuming you didn't have any kind of private short or long term disability insurance? Praying for your provision - it's the last thing you need to be worrying about now.

    The OP is Canadian and likely would never have access to that facility. We (by-and-large) have no choice of where we're treated for any given thing; there's usually one facility in every major centre that specializes and we go where ever we're sent. (Some of us, living in remote regions, may have their access to the best treatments limited due to proximity.)
    No, you're right about the private insurance. It's funny - well ironic actually, he had started bringing that up in recent weeks. Had given me a company he wanted me to look into because they cover chiropractic which he had been trying for the back pain. The same irony in the many discussions we've had about increasing his life insurance but never quite got to.

    That's down the road, though. We have good equity in the house, so we can sell if it comes to that.

    And yes, you're correct, we are Canadian. Not too far from Juravinski, in fact so I'm sure we'll be referred there. Good as far as I know.
     

    Mokat76

    DisKat
    Joined
    Jan 25, 2006
    No advice, but I’ll keep your family in my thoughts and prayers as you navigate this. I hope it’s not as bad as you think.
    :grouphug:
     

    DisneyOma

    DIS Veteran
    Joined
    Jul 27, 2015
    No, not all the time at all. Firstly, we can't purchase any type of 3rd party insurance that would pay the fees; some people do go at their own expense but it wouldn't be common for the average person to have the tens or hundreds of thousand dollars necessary. In certain (rather rare) circumstances a Provincial Health Authority will approve treatment at facilities in other provinces or the States but that is at their discretion - not at all just at the request of the patient. There are actually some instances where paying for the private provision of your own health services is actually illegal - it's complicated.
    Thank you for this information - that's not how the healthcare industry portrays the influx of international patients, but I'm believing you more than the advertising crap I get from the hospitals my family is affiliated with.

    rodeo65, I hope you feel better soon, so you can go be with your husband. If you do need any info from MD Anderson (even if you can't go there) please let me know and I will see what my daughter can provide for treatment options, so you can at least ask about them with your husband's medical team.
     
  • WebmasterMaryJo

    Techarita
    Staff member
    Administrator
    Joined
    Dec 15, 1998
    I'm so sorry your family is going through these health issues with your husband. I wish I had something smart to say that would help you. I'm keeping you in my thoughts and prayers, though, and am following along. You've got some good advice, and I agree that accepting help is a good thing. :hug:
     

    ronandannette

    I gave myself this tag and I "Like" myself too!
    Joined
    May 4, 2006
    Thank you for this information - that's not how the healthcare industry portrays the influx of international patients, but I'm believing you more than the advertising crap I get from the hospitals my family is affiliated with.

    rodeo65, I hope you feel better soon, so you can go be with your husband. If you do need any info from MD Anderson (even if you can't go there) please let me know and I will see what my daughter can provide for treatment options, so you can at least ask about them with your husband's medical team.
    There are likely tons of affluent people from countries with far-inferior medical care that come to them. There are many very highly regarded private clinics in Canada that cater to international patients. It's not strictly legal for them to treat Canadians or for Canadians to pay for healthcare in-country (like I said, it's complicated :upsidedow )
     

    rodeo65

    DIS Veteran
    Joined
    Feb 1, 2009
    So, day six on our journey into hell. This morning I went to see our GP for a follow up on my own cold/flu issue to see if I was safe to be with my husband. Actually I went to see a different doctor in the practice because ours was not due back until tomorrow. As it happened, when I arrived, I noticed that he was in the office and asked if he could see me for a few minutes. I could still do my follow up with the other doctor but wanted to know what info he could provide. He was in for an admin day, but agreed to see me. He ended up doing my follow up (I was allowed to see him with a mask and lots of hand washing) and then spent the better part of an hour discussing everything with me, which I so appreciated.

    He had already received everything from the hospital and had reviewed the results earlier. The expected diagnosis is malignancy. What we're waiting on the biopsy to learn is whether this is a primary site on the pancreas that has metastasized to the liver or two separate primaries. New info for me - the biopsy will be able to tell us which organ the spots on his liver came from. If they originated in the pancreas, they can detect that. Had no idea. He told me each organ has its own code and that will be imprinted in the cells they biopsied. Apparently, best case is they are two primary cancers and each will be treated individually. Basically, if it has already travelled from the pancreas to liver, as he put it "the seeds" are now everywhere and treatment would be more about extending life as long and as comfortably as possible. Scenario one will likely have some combination of surgery and chemo/radiation in the hopes of removing the larger mass and shrinking the rest.

    I did not share all of this with DH when I got back. He is still operating on lets just hope this is something else. He's not ready to hear what I heard today. The social worker came in this afternoon and discussed critical illness benefits and caregiver benefits, as well as what support needs to be in place for the kids and that conversation threw him for a loop. He said it was a "sobering" discussion. Then the internist tonight came in to discuss his heart situation and what tests they plan to run to figure that out and used the word malignancy. That also hit him hard. He needs time to process those two conversations before any further bombs are dropped. The internist tonight said the results could be back tomorrow or more likely Wednesday. I hope so. I'd been hearing two weeks and the wait is torture. Although still with a certain ability to hang on to "this isn't really happening."

    He has very little appetite. Hates everything in the hospital so I went home and made him a sandwich and brought it back. He texted every second I was gone - "how long, he was starving." He barely ate 1/3. As he says - and so it goes.
     

    Southernmiss

    I am hazed everyday
    Joined
    Aug 27, 2011
    So very difficult this all must be for you all. Breathe. Take one moment at a time. Build your support system.

    I can see you are a strong woman and send you big hugs and prayers.
     
  • BadgerGirl84

    I used to have a tag...
    Joined
    Nov 8, 2007
    I'm sorry you didn't have a more positive update to share. What a difficult conversation you had to have with your doctor--it was kind of him to take the time to talk with you, but wow, not easy. I'm so sorry. It was thoughtful and kind for you to hold off on sharing the news with your husband if you didn't think he was ready to hear it. My heart breaks for your teens who must also be feeling anxiety and fear regarding their dad's health. I just said a prayer for your family.
     

    leebee

    DIS Veteran
    Joined
    Sep 14, 1999
    rodeo65, I am so, so sorry to read your update; I was hoping for brighter news. I hope you know how many of us are thinking of you, and that when you need a safe space to vent or find support, this is it. Hugs to you all.
     

    Vicki926

    Mouseketeer
    Joined
    Feb 3, 2015
    So, day six on our journey into hell. This morning I went to see our GP for a follow up on my own cold/flu issue to see if I was safe to be with my husband. Actually I went to see a different doctor in the practice because ours was not due back until tomorrow. As it happened, when I arrived, I noticed that he was in the office and asked if he could see me for a few minutes. I could still do my follow up with the other doctor but wanted to know what info he could provide. He was in for an admin day, but agreed to see me. He ended up doing my follow up (I was allowed to see him with a mask and lots of hand washing) and then spent the better part of an hour discussing everything with me, which I so appreciated.

    He had already received everything from the hospital and had reviewed the results earlier. The expected diagnosis is malignancy. What we're waiting on the biopsy to learn is whether this is a primary site on the pancreas that has metastasized to the liver or two separate primaries. New info for me - the biopsy will be able to tell us which organ the spots on his liver came from. If they originated in the pancreas, they can detect that. Had no idea. He told me each organ has its own code and that will be imprinted in the cells they biopsied. Apparently, best case is they are two primary cancers and each will be treated individually. Basically, if it has already travelled from the pancreas to liver, as he put it "the seeds" are now everywhere and treatment would be more about extending life as long and as comfortably as possible. Scenario one will likely have some combination of surgery and chemo/radiation in the hopes of removing the larger mass and shrinking the rest.

    I did not share all of this with DH when I got back. He is still operating on lets just hope this is something else. He's not ready to hear what I heard today. The social worker came in this afternoon and discussed critical illness benefits and caregiver benefits, as well as what support needs to be in place for the kids and that conversation threw him for a loop. He said it was a "sobering" discussion. Then the internist tonight came in to discuss his heart situation and what tests they plan to run to figure that out and used the word malignancy. That also hit him hard. He needs time to process those two conversations before any further bombs are dropped. The internist tonight said the results could be back tomorrow or more likely Wednesday. I hope so. I'd been hearing two weeks and the wait is torture. Although still with a certain ability to hang on to "this isn't really happening."

    He has very little appetite. Hates everything in the hospital so I went home and made him a sandwich and brought it back. He texted every second I was gone - "how long, he was starving." He barely ate 1/3. As he says - and so it goes.
    I’m so sorry that the news wasn’t better. Praying for the more hopeful scenario for you guys.
     

    ronandannette

    I gave myself this tag and I "Like" myself too!
    Joined
    May 4, 2006
    Bless you for having the strength and grace to buffer your husband for the time being - it seems like a very wise and loving thing to do right now. It does leave you with an enormous burden though and you need to pace yourself. Do you have trusted family and friends? It’s likely time now for you to draw them along side and support you in carrying the load, even if just by being a listening ear for your anxieties. :flower3:
     

    Disney Doll

    DIS Security Matron
    Joined
    Nov 5, 2000
    It goes without saying that you are in my prayers with regard to your situation.

    Some practical matters(having dealt with similar scenarios more than once):

    If the hospital seems to be rushing discharge or whatever, the buzzword is “I don’t think it’s safe at this point”. In the US, every state has a department that oversees hospitals and the last thing any hospital wants is to be reported to them for forcing an unsafe discharge. I assume Canada has something similar.

    At home, when he gets there, you want a hospital bed and a bedside commode. Depending on his level of strength and endurance, you may also want a shower chair. Also, again depending on his level of strength and endurance, you might want a walker and a wheelchair. It’s one thing to walk around your house. It’s another thing to schlep through a huge medical building to get to a doctors office. Also if your dining room doesn’t have an actual door that can be closed, consider a privacy screen (or screens depending on the size of the doorway) if it’s not feasible to add a door.

    You will need to accept help and let people help, because they do want to help. I remember when DMIL was as sick and we (the immediate family) were trying to do it alone so as to not be a bother because “everyone is busy” one of her friends commented that we were the first ones helping everyone else when they had an issue and didn't that give us a good feeling and that it was selfish of us not to allow others to have that good feeling now that we needed help.

    Take one day at a time. Keep notes because you will forget a lot of things otherwise. Not just notes of what the medical people tell you but notes about what is happening at home, how your DH feels, what he does during the day, medications and the times he takes them. You almost want to create a home medical chart...what he eats, what he drinks, activity, pain, medications, reactions to medications or treatments and “free text” notes.

    Please feel free to PM me with any questions. I’ve been an RN for 35 years and am happy to help you.
     
    Last edited:

    rickybobby

    Please bring back Tapestry of Nations
    Joined
    Jan 5, 2009
    Is the pain being controlled better? There is a pain patch called Lidoderm that can be placed at the site of discomfort that helps sometimes without having the nausea issues since it does not really get into the main circulation. It is a non narcotic (Lidocaine).
    Then there is a narcotic patch called Duragesic which is worn for three days at a time and releases a small amount each hour of Fentanyl into the body to counter pain.
    Hope your own sickness is on the mend.
     

    fhtpdw20

    DIS Veteran
    Joined
    Sep 26, 2006
    I'm so sorry it was not better news. First of all take care of yourself. Your DH will have the nurses and doctors looking after him. You can't be there for him and child(ren) if you wear yourself out trying to do everything. Let friends, neighbors, church, and family support you. Your kids are stronger than you think. After the shock wears off a little, they will be a source of support for you both too. My son was 20 when my DH was diagnosed with esphougeal cancer. We did not keep anything back from him. He voluntarily moved back home to help. If you don't already have an electric blanket, consider buying or borrowing one. Chemo has a tendency to mess up body thermostat and for my husband, he was still cold in the middle of summer, no air conditioning and wearing sweats. Just take in one day at a time and one appointment/treatment at a time. You still have many, many good days ahead. You will cheer as the numbers come down once chemo and radiation take hold. Hold tight to the victories. Plan a celebration for each goal in treatment achieved.
     



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