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Denial or just surviving

jen2012
Posts: 1607
Joined: Aug 2012

Since my husband has been in the hospital with one broken femur and one with a hair line fracture, it seems everyone is working very hard to get him to accept his crappy reality and outcome.  He was so upset on the second day after surgery ...insisting that we needed to talk about finances etc.  I finally said ok lets talk but since i handle all of the finances there is not much to talk about unless you have hidden millions somewhere.  Ive emailed his oncologist to see if something has changed since she discussed treatment with us and to tell her hes feeling written off.   She went to see him and reassure him that shes still treating this aggressively and isnt thinking the end is here.  Im mostly annoyed at the palliative care docs that seem to really be trying to push on him the way they think he should be dealing with his feelings.  I want them to just stop coming but they are trying to work out pain mgt.  

 

We understand our reality all too well but choose to try to have some hope.  We have cried and still cry many tears...we just try not to do it in front of everyone who walks thru the door.  We try to stay positive for our kids because we dont see the sense in throwing reality in their faces earlier than we need to.  They understand this is serious but we never told them about that 2 yr timeline...i wish we never heard it.  The guy is in pain and doped up...stop trying to have serious conversations with him...i just dont think its the right time for it.

I told him to ignore all comments that dont come from his doctor.

On a more positive note, the brain MRI was clear.

 

 

 

 

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm sorry that you and your husband aren't being treated with more kindness. I firmly believe that no matter what stage you're in, you have a right to hope. My brother is stage 4 and tells me all the time that he's going to beat this. No one is going to convince him otherwise. He knows that the doctor said it's not curable, but right now he refuses to accept that, and that's okay. He's dealing with it the best way he knows how. I see no need to keep reminding people about the survival rate. Many people make it well pass it. Keep the hope and ignore these lugheads!!! I'm hoping he's able to some pain relief asap!!

Lin

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Lin...Uncle Buddy sounds like a great guy. I hope he is right and he shows those docs they dont know everything!

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

It is very difficult to be where you are on this path.

If you can identify those who are bringing him down, talk with them and tell them to stop already...you both know the reality of the situation and don't need any more said.  You might also get his onc to talk to the hospital staff/palliative docs.

As for pain management...with my sister she only became pain free after much experimenting with various combinations as the "usual" drugs made her so nauseaous.  She ended up with a combo of fentanyl patch (changed every other day) and morphine tabs as needed for break thru pain.  She used fenegran gel on the wrists for nausea.  She was a bit of "fuzzy" memory,but able to fully function.

It is not denial to continue to have hope. 

If you have addressed those things which should be discussed even by those going in for simple surgeries or being responsible planners...then enough said on the subject.

Be the gatekeeper for him and let all know that hope can be a fragile thing when in his situation.  If they can't stop being the "Debbie downers" they don't need to talk with him at all.  They should talk with you if they feel it is important.  You have the strenght to tell them to back off on such conversations.

I pray they can get the pain under control soonest.  Please keep us posted.

Hugs,

Marie who loves kitties

 

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Marie...hes had the patches and has been taking dilaudid since his oct stay. The palliative care team added in gabapentin because the pain meds were making his legs jumpy. His pain is certainly better than a week ago but not gone. The palliative care doc was questioning him friday on why he still has pain..since they have not yet dealt with the reason for the pain I was surprised a doctor would question that. He didnt want to turn away services that could help, but we decided last night they are just not helping and i will be emailing his onc today to discontinue their visits.

RobinKaye
Posts: 93
Joined: Nov 2011

Jen,  have you checked to see if there is a pain management team at your hospital. My sister had surgery for a tumor on her spinal cord (benign) which had weaved itself into the cord.  The pain she had and still has 3 years later was at times unbearable.  Medications were prescribed, most that you mentioned in your post, but it took pain specialists to get it all working right.  I don't know, just a thought. Doctors who don't specialize in pain management may just be prescribing what they are familiar with and may not understand how all that stuff works together. 

Robin

jen2012
Posts: 1607
Joined: Aug 2012

That's a good suggestion Robin.  I will ask his oncologist about it today.   Thanks!

Chelsea71
Posts: 1170
Joined: Sep 2012

Keep the hope going.  Tell the palliative care people that their services are not yet required.  I despised anyone who tried to take away our hope.  It helped both of us cope.  Steve had hope right up until the end and it helped him deal with all the gloom.  I told him of all the people here who have done so well for years.  I would remind myself of Maggie and Phil and all those who have thrived despite a grim diagnosis.  I told us both that he could go on this way for years.  It could have worked out this way but it didn't..... But it might for you and your husband.  There are good examples here of people who have thrived despite bone mets.

Chels

jen2012
Posts: 1607
Joined: Aug 2012

Chels...hope is the only way I see to manage such a horrible diagnosis.  Most  have seemed to agree with that approach.

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Marie, I think you said it all.  

IMHO, there are a plethora of well meaning people who have read much but personnally experienced little.  

All though well meaning, and hopeing to do good. Sadly, it may be up to you as the caregiver to be able act as the gatekeeper.

Peace and comfort,

Art

jen2012
Posts: 1607
Joined: Aug 2012

You are right Art...I have no problem being the gatekeeper , as long as he agrees.  You are right, i think they all mean well, but have their own agendas when they walk in the door.

janderson1964
Posts: 2215
Joined: Oct 2011

It just absolutely broke my heart reading your post. I wish ther was something I could say or do to ease your pain and the pain of your hsuband. The clear MRI is a good thing and the oncologist hasn't given up. Try to focus on the positive things. There is nothing wrong with hope. Miracles do happen and hope is probobly the biggest motivating factor the keeps us going besides our loved ones. You are both heavily in my thoughts and prayers.

jen2012
Posts: 1607
Joined: Aug 2012

Your thoughts and prayers mean so much. I can see things improving.  My husband is having a tough time with that.  I share your story and others to show him there is another side after all the knock downs.  So grateful to you longtime survivors who keep posting...it really helps keep hope alive.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

not even doctors, imo.  My sister chose to be on chemo until very close to the end of her life, despite doctors telling her she shouldn't do it.  She didn't choose to acknowledge the fact of her coming death out loud (although I'm sure she knew inside) until a week or so before she died.

That was her choice, and as her family, we supported that.  She went through a couple of doctors before she found one who would let her take this approach.  The first two were very insistant that she "face up" to her reality.  

I don't think it's the doctor's place to force this on patients, until they express the desire to hear it.

I'm so sorry, Jen.  Poor Mark.  I feel horrible about all of this.  I so wish you didn't have to go through this terrible experience.

 

{{{Jen}}}  from me

jen2012
Posts: 1607
Joined: Aug 2012

I agree...a doctor should be up front but not negative.   Thanks for the hugs and support!

 

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am sorry for the spot you are in right now.   It is serious and if I understand your post correctly, both you and your husband know the situation you are in and the seriousness of it.   Pallative care teams are there to  make sure the patient and family are well informed of the situation, make informed decisions and develop a plan to make sure the patient is most comfortable with pain and the like.  If they have done this then they have done their job.   It is so very tough, I know this from experience.  If they are causing extreme distress, then ask them to discuss things with you in the hallway.  If you do not have a medical directive naming you as the decision maker, I might suggest you get one.  Make sure you know medically everything going on.  You can have this discussion in a conference room.  If you are not sure  of something, ask that they meet with you privately.  

Take care - Tina

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

honestly hope is all we have. We know that one day we have to acknowledge that we have done our best. Nobody can tell us when that day is. So hope is a powerfull mental state.

we can also get hit by a car or bus, so who is to tell us otherwise, it makes me so angry when dr or nurses try to tell us how we should feel. You have enough on your shoulders that you should not have to deal with negative people also.

you are so in my thoughts and prayers, every day.

many hugs and keep smiling and hoping for better days to come.

jen2012
Posts: 1607
Joined: Aug 2012

Its really good to know we arent alone in choosing to deal this way.  Nurses are pretty special...most have been so upbeat, encouraging and positive.  

 

 

 

jen2012
Posts: 1607
Joined: Aug 2012

Tina..Seems I tend to walk in on the end of the conversations.  I'm relying on the oncologist for all med info and emailing her for clarification as necessary.  

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

At least that's one less thing to worry about!  Wish that was all you had to worry about.  I think what everyone else said about the doctors make sense.  I hope you can get them to talk to you instead of your husband.  You're doing a great job taking care of things.  Hope things improve and soon.  Traci

Cathleen Mary
Posts: 827
Joined: May 2011

 

Jen,  Just reading your post made me angry for all that you are going through. Although I know I am in  the minority, I have little use for pallative care or hospice.  I had terrIble experiences in that arena with both of my parents ( i thought the first was a fluke so was open to trying again) in much the same way you are experiencing. My own directives state that they are never to be involved in my care.  That said, I know many others feel they were absolutely wonderful and are forever grateful to them. 

Would your husband's oncologist be willing to be the go-between and speak to the palliative care team?  You need a break. You have every right to have hope and to deal with this illness as best serves your family. 

Hugs and prayers.

CM

jen2012
Posts: 1607
Joined: Aug 2012

I think asking them to go thru the onc is a good idea.  We appreciate their help in managing the pain, just not the negativity that comes with it.  They zap the energy right out of the room.  My husband said just seeing their serious faces depresses him.  We definitely dont need that.

jen2012
Posts: 1607
Joined: Aug 2012

I'm really looking forward to some normalcy again. I think his spirits will improve when he can get up and walk again. Very relieved the brain mri was good!

emma_s's picture
emma_s
Posts: 22
Joined: Mar 2013

Jen, my husband was in a similar situation after he had a surgery on broken femur last year in June. He was histerical, crying, had a lot of pain, trying to convince me and my son that this was the end, etc. I thought my heart would break... And I had no choice but to pull myself together and be stronger as never before for the sake of my family and myself. I'm often trying to focus on positive things even it's hardly to see any. Gradually I became kind of a psychiatrist for my husband even though I need one for myself too.

I was in awe when his surgeon asked me looking straight in my eyes: "Do you knbow that there is no cure for bone mets?"

At least my husband' oncologist always has plan for him. The chemo though my husband started 6 weeks after surgery. The main idea was to give as much as possible time for the leg to heal first.

It's normal that your husband feels hopeless and extremely down. But I hope the things get better as soon as he starts moving a bit. They made my husband walk with a walker on the second day after surgery and on the 4th or 5th day they made him walk stairs.

Hugs,

Emma

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Just wanted to say hi, Emma.  Just read your profile and see that your from Toronto.  I am in Cornwall.  Nice to see fellow Ontarians here.

 Youre obviously a wonderfully supportive wife and caregiver.  I know how hard it can be.  Hope you and your husband are doing well.

Chelsea

jen2012
Posts: 1607
Joined: Aug 2012

Thanks for sharing your husbands similar experience. They are getting him up but he can only go a few steps. Hopefully that will improve soon. Hugs to you too...not an easy path to walk.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

And it's always good to hear of nothing there....that's the place that scares me the most.  I'm so glad that there is good news there for you two:)

I'm so sorry, Jen, about everything you have to go through with.  Pain is a hard thing to get its arms around....it's such a moving target and fluctuates so much in any given day unless you're comatose.

I've been battling horrific pain the past few months.....the pain med dosages are increasing, but I'm staying with, but I suffer in the interims as the body adjusts to the new dosages.....heavyt sweats head to toe, some nausea, sleepiness....and of course, you have to watch the breathing as this can be criticial....so I've really had to monitor to stay within the requirements...even with the pain.

Past a certain point of pain, you simply can't think, have no patience or attention span to matter, because the pain overrides all.  So debilitating. 

Tonight, I had to ramp up over normal just to get up and watch the news with Kim....and thought I would check here....and respond to your post. 

I"m sorry about his broken femur....having to stop treatments for things to mend for several weeks is not our choice, but what are we going to do.  I'm dying on the vine right now waiting for an old appendix to heal up, so I can start taking treatments again.  Some choice...but the only one.

The infection nearly got me though....it was close and I will be glad when it heals up and they pull the wound vac.

I guess iin some way, I do empathize with what you are feeling.  The days march on so steadily that we ask ourselves if there will ever be anything else?  Things just meld together and form ouir new life.

Anyway, sharing your story and I tell Kim about you both all the time:)

I'm sorry we're so tough on our caregivers...like me, I"m sure your husband would do anything he could to alleviate your burdens.  We hate seeing our other hurt so much when we're not in a position to contribute the way that we want to.

Here with you along with the entire community....

-Craig

jen2012
Posts: 1607
Joined: Aug 2012

So glad to see your post and appreciate you doing so Craig.  Im sorry you are dealing with pain too.  It does make focus difficult.  He has 2 fentanyl patches and heavy dilaudid doses.  The sweating is horrible.  He was soaking thru 4 and 5 sets of clothes a day...plus sheets, pillows etc.  

As i tell my husband, please dont waste any time or energy feel guilty for making things difficult for us.  We know this is not what you chose for yourself or us.

As always, I appreciate your support and look forward to you posting regularly again.  Be well!

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Jen, Know that my thoughts and prayers are with you and your husband during these trials. Keep hope alive!

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

uplift you and your husband and give you hope. The palliative care team is there to bring about pain relief from the suffering of treatments, surgery, and chronic illness. Palliative care is not hospice ... but they do sometimes find themselves in a position to counsel patients and families when further treatment would decrease the quality of life remaining for a patient whose cancer is not curable and herein lies part of the problem. They may give advice to families before that advice is requested because they sense that the patient could have better quality of life remaining by not continuing aggressive treatment. Each of your husband's caretakers are seeing him likely from a differing perspective.

But, your husband does still have treatment options that he wishes to pursue ... so anyone, including palliative care, who even goes close to giving you unsolicited advice that you do not wish to hear ... have a plan in your mind ahead of time as to how you will respond. This will help you I think as it did for me.

You have a great deal of responsibility and this has been such a difficult time for your family.  Stay strong, maintain hope, and steer clear of those that bring you down including doctors-nurses, friends, and even family.  That is a strong statement, but I found that I needed all my strength to be the best advocate that I could for my husband and I did turn away from some people because they simply were not able to be truly supportive.

You can do this. Your husband is going to feel better after he heals from this ordeal and your family will be back together. It is true you do not know what the future brings, none of us do ... but, you have each other now. 

Peace be with you. ~ Cynthia

jen2012
Posts: 1607
Joined: Aug 2012

Good advice. When I told my my husbands brother about the brain MRI, his response was "that doesnt sound good" i was silent...didnt know what to say, but geez thats really not a helpful or supportive commen th. Have had more sensitive and supportive comments than the stupid ones so I guess thats a plus.

rls67
Posts: 127
Joined: Nov 2012

I am sorry to hear about all you and your husband are going through. I understand exactly what you are going through as a care giver. My wife is not doing to well either. All I can say is stay strong. You are doing the best you can for your husband. You shouldn't have to deal with all the crap from drs. or hospitals. But unfortunatly it is part of being a caregiver. Some people, even drs and nurses seem to lack compassion. Hang in there Jen, you have a ton of people sending good thoughts and prayers your way. Take care of yourself as well. I hope everything gets better for him and he finds relief from his pain.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks - I'm sorry your wife is not doing well.   This is a hard road for all involved.  Wish they'd just find the damn cure already.  

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

I don't know if folks are wearing masks in the room where your husband is ... but, when my brother was in the hospital with cancer we drew smiley faces on all the masks of anyone who came into the room. -- They may not be smiling under there but we made it seem as if they were!

jen2012
Posts: 1607
Joined: Aug 2012

Cute idea Cynthia - but no masks needed!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

At my local hospital they were talkng last year about their new forage into having a "palliative care" team, I was thinking at the time, I hope they don't feel the need to visit me (since I'm considered palliative care, as most of us are I think), I told my son if they ever come to pay a visit please send them away as I wasn't quite ready to go yet.  I think the intention is good, but I don't think they have thought this through, most of us with Stage IV are considered palliative care, I've been that for almost 4 years, so I think they should be careful about their doom and gloom stuff and save it for when I decide to go hospice (hopefully a long time away), I don't think the hospitals have this palliative care stuff figured out yet, yes, we are Stage IV, but we still have a lot of life in us, and their discouraging talks certainly don't help with the "let's kick these tumors arse" attitude that many of us have and are doing.  

You are right to send them away, just tell them thank you very much, but you aren't needed at this moment.  Sheesh, this just ticks me off!

Im glad to hear about the MRI!!!  And remember others have had bone mets and are still here!

love and Hugs,

Winter Marie

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Winter Marie - I think you are right about the doom and gloom stuff.  It's probably just my wrecked brain, but it's almost like some of them like the drama.  It makes me wonder if they've ever gone through anything like this and how they would deal with it.    At this point, I just want them to start chemo so it doesn't spread further.  Surgery is now and hopefully chemo will begin in 2 weeks.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Jen

 

Wishing him the best in treatments, faces, and attutudes. 

 

Take care of you. 

 

 

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