Lee & Chantal

fredswilma

Hi
Just hoping everything is OK with you two, you've been really quiet lately, know that I am thinking of you both.
Ann

Daisylin

Hi Ann,
Thanks for your concern. We have been doing fairly well these days. I've been on here, as always, several times a day, just haven't posted anything. I've been excitedly following the graduating class as they head towards recovery!!!!!

As an update, Lee has had several appointments lately, one with the palliative care doctor at the cancer centre. Nothing drastic happened, other than they gave him a medication for his hiccups, which happen every so often and cause intense pain. The downside of this drug is that it causes severe drowsiness. I actually caught Lee sleeping in front of his computer at one point. LOL
The palliative care doctor seemed to be really on the ball, and wants to monitor the use of his PRN diluadid, to see if they need to increase the dosage of his long acting pain relief. I was very impressed that they actually seemed to LISTEN to what we were saying, which has not always been our experience.

We also had a visit from the hospice nurse, who set us up for services, as well as gave us information about what they provide. Seems to me that hospice in Canada is greatly different than in the States. They offer many wonderful services, including several types of massage, hairstyling, volunteer visits for companionship and 'crafty' type get togethers like art, knitting circle and scrap booking. These services would be available to me as well, and they signed us up for some of them. They do not do any medical type things, which is what I thought was their 'thing'. They seem to focus more on quality life activities and social events. She did offer me a caregivers support group, which I think I will take advantage of. Lee and I both thought the organization was wonderful, but not really what we need. It seems to be more geared to older clients who have no support system. She made me feel like I'm WAY too young to be in the position that I find myself in. ( I'm 39 ) So, I guess that right now, hospice is just not for us, but we admire the idea behind it.

Pain wise, Lee seems to have much better control right now. He's loving the feeding tube (not the time consuming 'leashed on' feeling and the fact that our 'portable' pump and stand weigh about 30 pounds.) but, the fact that he does not have to eat anything. He still will drink some juice or pop, but has not actually eaten anything in several weeks. He tried a couple things, but could not manage to swallow anything.

One thing that he was a bit concerned about is that the visiting nutritionist mentioned that she has a real fear of Lee aspirating. Due to the fact that his esophagus is virtually completely closed up, she thinks saliva or liquids may get into his lungs and cause problems. I've seen this issue on here several times before, but don't recall any tips to prevent it. Lee does have a slant pillow, but he can't get comfortable enough to sleep with it, so he has not been using it. We asked the doc about a stretch, but he said no. (not sure why, but I think from reading online there may be a fear that they'd tear the tissues) Would love some advice if anyone has experience in this!!

Anyways, Ann, again thanks for your concern. I hope all is well with you as well.
Take care,
Chantal

paul61

Daisylin said:

Hi Ann,
Thanks for your concern. We have been doing fairly well these days. I've been on here, as always, several times a day, just haven't posted anything. I've been excitedly following the graduating class as they head towards recovery!!!!!

As an update, Lee has had several appointments lately, one with the palliative care doctor at the cancer centre. Nothing drastic happened, other than they gave him a medication for his hiccups, which happen every so often and cause intense pain. The downside of this drug is that it causes severe drowsiness. I actually caught Lee sleeping in front of his computer at one point. LOL
The palliative care doctor seemed to be really on the ball, and wants to monitor the use of his PRN diluadid, to see if they need to increase the dosage of his long acting pain relief. I was very impressed that they actually seemed to LISTEN to what we were saying, which has not always been our experience.

We also had a visit from the hospice nurse, who set us up for services, as well as gave us information about what they provide. Seems to me that hospice in Canada is greatly different than in the States. They offer many wonderful services, including several types of massage, hairstyling, volunteer visits for companionship and 'crafty' type get togethers like art, knitting circle and scrap booking. These services would be available to me as well, and they signed us up for some of them. They do not do any medical type things, which is what I thought was their 'thing'. They seem to focus more on quality life activities and social events. She did offer me a caregivers support group, which I think I will take advantage of. Lee and I both thought the organization was wonderful, but not really what we need. It seems to be more geared to older clients who have no support system. She made me feel like I'm WAY too young to be in the position that I find myself in. ( I'm 39 ) So, I guess that right now, hospice is just not for us, but we admire the idea behind it.

Pain wise, Lee seems to have much better control right now. He's loving the feeding tube (not the time consuming 'leashed on' feeling and the fact that our 'portable' pump and stand weigh about 30 pounds.) but, the fact that he does not have to eat anything. He still will drink some juice or pop, but has not actually eaten anything in several weeks. He tried a couple things, but could not manage to swallow anything.

One thing that he was a bit concerned about is that the visiting nutritionist mentioned that she has a real fear of Lee aspirating. Due to the fact that his esophagus is virtually completely closed up, she thinks saliva or liquids may get into his lungs and cause problems. I've seen this issue on here several times before, but don't recall any tips to prevent it. Lee does have a slant pillow, but he can't get comfortable enough to sleep with it, so he has not been using it. We asked the doc about a stretch, but he said no. (not sure why, but I think from reading online there may be a fear that they'd tear the tissues) Would love some advice if anyone has experience in this!!

Anyways, Ann, again thanks for your concern. I hope all is well with you as well.
Take care,
Chantal

Perhaps an adjustable bed or a recliner might help
Chantal,

I had trouble learning to sleep with a bed wedge as well. I kept sliding off the side or I would wake up and I had slid down the incline and was sleeping at the bottom of the pillow flat on the bed. I eventually purchased an adjustable bed. The bed works great for me but they can be a bit pricey. I did find a couple other things that were helpful before I purchased the bed.

The first thing was to use the inclined pillow but to place a second pillow under my legs so they were bent at the knee. This kept me from sliding down the pillow and flattened out my back so I did not get a sore back from using the wedge pillow.

The second thing was to try sleeping in a recliner. Again having my legs raised as well as my back raised seemed to be more comfortable.

The third approach is to raise the head of the bed about six inches above the foot of the bed. There are a number of stores that carry blocks to place under the legs of the bed to raise the head of the bed. Bed Bath and Beyond carries them in the US. I am not sure were to suggest to look in Canada but most stores that carry that type of merchandise should have them.

Best Regards,


Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

LeeinLondon

Thanks!
Hello thanks for you concern, but I'm alive and kicking and Chantal pretty much covered everything. I'm feeling cautiously optimistic right now, and probably the most "normal" I've felt in months. The feeding tube saved my life, and we seem to be almost stable in regards to pain management. The only things that continue to wipe me out are sunlight and hot weather.

best,
Lee

unclaw2002

Daisylin said:

Hi Ann,
Thanks for your concern. We have been doing fairly well these days. I've been on here, as always, several times a day, just haven't posted anything. I've been excitedly following the graduating class as they head towards recovery!!!!!

As an update, Lee has had several appointments lately, one with the palliative care doctor at the cancer centre. Nothing drastic happened, other than they gave him a medication for his hiccups, which happen every so often and cause intense pain. The downside of this drug is that it causes severe drowsiness. I actually caught Lee sleeping in front of his computer at one point. LOL
The palliative care doctor seemed to be really on the ball, and wants to monitor the use of his PRN diluadid, to see if they need to increase the dosage of his long acting pain relief. I was very impressed that they actually seemed to LISTEN to what we were saying, which has not always been our experience.

We also had a visit from the hospice nurse, who set us up for services, as well as gave us information about what they provide. Seems to me that hospice in Canada is greatly different than in the States. They offer many wonderful services, including several types of massage, hairstyling, volunteer visits for companionship and 'crafty' type get togethers like art, knitting circle and scrap booking. These services would be available to me as well, and they signed us up for some of them. They do not do any medical type things, which is what I thought was their 'thing'. They seem to focus more on quality life activities and social events. She did offer me a caregivers support group, which I think I will take advantage of. Lee and I both thought the organization was wonderful, but not really what we need. It seems to be more geared to older clients who have no support system. She made me feel like I'm WAY too young to be in the position that I find myself in. ( I'm 39 ) So, I guess that right now, hospice is just not for us, but we admire the idea behind it.

Pain wise, Lee seems to have much better control right now. He's loving the feeding tube (not the time consuming 'leashed on' feeling and the fact that our 'portable' pump and stand weigh about 30 pounds.) but, the fact that he does not have to eat anything. He still will drink some juice or pop, but has not actually eaten anything in several weeks. He tried a couple things, but could not manage to swallow anything.

One thing that he was a bit concerned about is that the visiting nutritionist mentioned that she has a real fear of Lee aspirating. Due to the fact that his esophagus is virtually completely closed up, she thinks saliva or liquids may get into his lungs and cause problems. I've seen this issue on here several times before, but don't recall any tips to prevent it. Lee does have a slant pillow, but he can't get comfortable enough to sleep with it, so he has not been using it. We asked the doc about a stretch, but he said no. (not sure why, but I think from reading online there may be a fear that they'd tear the tissues) Would love some advice if anyone has experience in this!!

Anyways, Ann, again thanks for your concern. I hope all is well with you as well.
Take care,
Chantal

Chantal,My dad had a
Chantal,

My dad had a similar problem -- if he drank clear liquids he would aspirate them into his lungs and then develop pneumonia. The solution for my dad was that he was no longer allowed to drink clear liquids of any type. The liquids had to be what is called (in the US) nectar thick liquids. They actually have containers of this stuff and also a dry mix. He liked the cranberry flavor the best. You have to be careful with the nectar liquids though because the premixed ones tend to have high sugar content and that can cause some significant problems from sugar levels to dumping. Dad's doctors monitored and gave him several swallow tests to determine the extent of the problem - not sure if Lee has had one done recently.

The nectar water does not have a nice texture and certainly isn't satisfying the way drinking a cup of coffee or tea or water would be. The nectar water is like a thick dense liquid, water is certainly a misnomer. Unfortunately, because of the continued risk of pneumonia drinking regular liquids was not an option.

I know that the doctor's here were not really concerned about him aspirating his saliva, but they did totally restrict his liquids - he couldn't even have ice chips. We used alot of the Biotine mouthwash as well as mouth gels to help with the dryness. You are Lee are both in my thoghts daily.

Hugs and prayers,
Cindy

mrsbotch

LeeinLondon said:

Thanks!
Hello thanks for you concern, but I'm alive and kicking and Chantal pretty much covered everything. I'm feeling cautiously optimistic right now, and probably the most "normal" I've felt in months. The feeding tube saved my life, and we seem to be almost stable in regards to pain management. The only things that continue to wipe me out are sunlight and hot weather.

best,
Lee

You sound good
Lee

It was so good to hear from you . I am so excited that the feeding tube is doing its job. That is wonderful. I have heard from Chantel a couple of times. She seems like a wonderful lady.

You are in my thoughts alot. Take care and keep improving.


Love ya

Barbara

NikiMo

unclaw2002 said:

Chantal,My dad had a
Chantal,

My dad had a similar problem -- if he drank clear liquids he would aspirate them into his lungs and then develop pneumonia. The solution for my dad was that he was no longer allowed to drink clear liquids of any type. The liquids had to be what is called (in the US) nectar thick liquids. They actually have containers of this stuff and also a dry mix. He liked the cranberry flavor the best. You have to be careful with the nectar liquids though because the premixed ones tend to have high sugar content and that can cause some significant problems from sugar levels to dumping. Dad's doctors monitored and gave him several swallow tests to determine the extent of the problem - not sure if Lee has had one done recently.

The nectar water does not have a nice texture and certainly isn't satisfying the way drinking a cup of coffee or tea or water would be. The nectar water is like a thick dense liquid, water is certainly a misnomer. Unfortunately, because of the continued risk of pneumonia drinking regular liquids was not an option.

I know that the doctor's here were not really concerned about him aspirating his saliva, but they did totally restrict his liquids - he couldn't even have ice chips. We used alot of the Biotine mouthwash as well as mouth gels to help with the dryness. You are Lee are both in my thoghts daily.

Hugs and prayers,
Cindy

Nectar thick and tuck your chin
My husband has to have nectar thick liquids since surgery and he was also told that he needs to tuck his chin when swallows. He was/is also in danger of aspirating liquids. Maybe this will help Lee.

Niki

chemosmoker

LeeinLondon said:

Thanks!
Hello thanks for you concern, but I'm alive and kicking and Chantal pretty much covered everything. I'm feeling cautiously optimistic right now, and probably the most "normal" I've felt in months. The feeding tube saved my life, and we seem to be almost stable in regards to pain management. The only things that continue to wipe me out are sunlight and hot weather.

best,
Lee

Good to hear!
Lee and Chantal,

Good to hear you two are okay!
LOL

I am glad to see your fighting spirit is strong, as always.
Love to read your posts. WRITE MORE.

I am glad they are getting on top of your pain management, and sorry to hear that the Canadian Hospice is more of an Arts-and-Crafts class. Weird!
Here, they DO offer those kinds of things, like scrap-booking, recording your personal history for family and record, and some of the other things you two were told of, but those are always second to the quality of life and pain management aspects of their care, not the focus. I wonder if it was THAT particular agency, or if that is the norm there? Anyone know?

Much love to you both. BOTH of you add a lot of valuable input here, and I can see why you are missed when you don't post.

-Eric

Ericalynn

chemosmoker said:

Good to hear!
Lee and Chantal,

Good to hear you two are okay!
LOL

I am glad to see your fighting spirit is strong, as always.
Love to read your posts. WRITE MORE.

I am glad they are getting on top of your pain management, and sorry to hear that the Canadian Hospice is more of an Arts-and-Crafts class. Weird!
Here, they DO offer those kinds of things, like scrap-booking, recording your personal history for family and record, and some of the other things you two were told of, but those are always second to the quality of life and pain management aspects of their care, not the focus. I wonder if it was THAT particular agency, or if that is the norm there? Anyone know?

Much love to you both. BOTH of you add a lot of valuable input here, and I can see why you are missed when you don't post.

-Eric

Glad To see Everyone is doing OK
Lee& Chantal,
I AGREE with ERIC, glad you are here posting!
ERIC—I WAS HAVING A SLOW MORNING, NOW I AM SMILING EAR TO EAR!
Have a good day everyone-I'm off to work
Love Erica

TerryV

Daisylin said:

Hi Ann,
Thanks for your concern. We have been doing fairly well these days. I've been on here, as always, several times a day, just haven't posted anything. I've been excitedly following the graduating class as they head towards recovery!!!!!

As an update, Lee has had several appointments lately, one with the palliative care doctor at the cancer centre. Nothing drastic happened, other than they gave him a medication for his hiccups, which happen every so often and cause intense pain. The downside of this drug is that it causes severe drowsiness. I actually caught Lee sleeping in front of his computer at one point. LOL
The palliative care doctor seemed to be really on the ball, and wants to monitor the use of his PRN diluadid, to see if they need to increase the dosage of his long acting pain relief. I was very impressed that they actually seemed to LISTEN to what we were saying, which has not always been our experience.

We also had a visit from the hospice nurse, who set us up for services, as well as gave us information about what they provide. Seems to me that hospice in Canada is greatly different than in the States. They offer many wonderful services, including several types of massage, hairstyling, volunteer visits for companionship and 'crafty' type get togethers like art, knitting circle and scrap booking. These services would be available to me as well, and they signed us up for some of them. They do not do any medical type things, which is what I thought was their 'thing'. They seem to focus more on quality life activities and social events. She did offer me a caregivers support group, which I think I will take advantage of. Lee and I both thought the organization was wonderful, but not really what we need. It seems to be more geared to older clients who have no support system. She made me feel like I'm WAY too young to be in the position that I find myself in. ( I'm 39 ) So, I guess that right now, hospice is just not for us, but we admire the idea behind it.

Pain wise, Lee seems to have much better control right now. He's loving the feeding tube (not the time consuming 'leashed on' feeling and the fact that our 'portable' pump and stand weigh about 30 pounds.) but, the fact that he does not have to eat anything. He still will drink some juice or pop, but has not actually eaten anything in several weeks. He tried a couple things, but could not manage to swallow anything.

One thing that he was a bit concerned about is that the visiting nutritionist mentioned that she has a real fear of Lee aspirating. Due to the fact that his esophagus is virtually completely closed up, she thinks saliva or liquids may get into his lungs and cause problems. I've seen this issue on here several times before, but don't recall any tips to prevent it. Lee does have a slant pillow, but he can't get comfortable enough to sleep with it, so he has not been using it. We asked the doc about a stretch, but he said no. (not sure why, but I think from reading online there may be a fear that they'd tear the tissues) Would love some advice if anyone has experience in this!!

Anyways, Ann, again thanks for your concern. I hope all is well with you as well.
Take care,
Chantal

Glad to see you both posting
But also glad that you're taking time for yourselves.

Also nice that the palliative doctor seems to be listening. It is SO Frustrating when the doctors don't pay full attention because they are the ones with the training.

Chantal - keep pushing your doctors. I've got a feeling that you are more in tune with Lee's needs than they are.

Lee - Just keep doing what you're doing. I'm also happy to hear that the Jtube is working for you. It is amazing what a few calories bring to your day, isn't it?

You guys bring a smile to my days. Praying for peace & quality in yours.

Terry