Cancer Support and Caregivers Who Are Trail Blazers!

JustJo · 03-21-2012, 07:35 AM

Hello all

Mom got a stomach tube put in yesterday. The plus side is that it will replace the PIC line that has given her such problems and make it easier to clear the recurring blockages that she's getting...the down side is, well, that it's a stomach tube....so one more port, one more (minor) surgery, and one more thing that is depressing the hell out of her.

They delayed the new chemo (for the liver lesions) until they deal with this complication...and no word yet on when that starts again, or if. She is feeling like the whole thing is hopeless, and all she wants is to go home again and get her affairs in order, ship things to my sister and me, sell her house....and then see what's next.

I keep reiterating my open invitation to come here for whatever period of time she wants, up to and including the end, but she has very mixed feelings. Honestly, she is more attached to her house and her land than she is to family....and would rather be there as long as she can even if it ends up shortening her life.

Her friends are struggling with this as much as I am....but I find myself getting so impatient and frustrated. One called me yesterday at 3 p.m. and talked for an hour and a half....all upset and sad and crying. She was offering help, but also obviously feeling the need to talk about and deal with her own sadness. Part of me understood and was there with her, and part of me was angry that she would do that in the middle of my work day, when I needed to be working, and then upset me so much in the process that I never did get back to it....and had to regroup myself so I could go be there for my son. Before I could even manage that, another called to basically do the same thing.

Honestly, part of me wants to just lash out and scream....I am struggling too. Not only with my mother, but with my finances (now with 2 mortgages and 1 income and all the credit obligations I ran up since we moved), with the house (where I have had to be a plumber myself twice....and now have to find about $200 to have the washing machine fixed), just to keep up with the housework, the animal care, the meals....all of the stuff needed in a house this large, which I never would have bought for just myself and my son. Diabetic fatigue hits about 4 p.m. and I feel like I could sleep for a year....but instead I have to keep going, and going, and going.

Yes, I know....I'm fortunate that I have a good job with people who are totally supportive of what I'm going through. I'm fortunate that I have a wonderful, happy, healthy, undamaged son....far more than one of my old friends can now say. I'm fortunate that my own health is stable because of my efforts (and sheer luck, I'm sure). I'm fortunate that I have people in my life who love me and care about me.

It could be worse. And I know I have some help on the way. But fuck....couldn't they work this out with each other up there? Do they all have to dump their stuff in my lap too?

JustJo · 03-21-2012, 04:31 PM

Quote:

Originally Posted by JustJo

Hello all

Mom got a stomach tube put in yesterday. The plus side is that it will replace the PIC line that has given her such problems and make it easier to clear the recurring blockages that she's getting...the down side is, well, that it's a stomach tube....so one more port, one more (minor) surgery, and one more thing that is depressing the hell out of her.

Ugh...so many things have been discussed that she and I BOTH got this wrong. It is a stomach tube, but it is located between the stomach and what's left of the small intestine, and is to control outgoing rather than incoming.

Evidently it will help them clear blockages, and also allow her to cirucumvent the intestine entirely (at will) when she is feeling discomfort.

So...now she is hooked up to 3 bags....TPN in through the PIC line, the original ostomy bag and now the new one....that I don't even know what to call.

Her TPN is increased to about 20 hours a day, and she will never be off of it.

She is feeling like a monster....with every step of food intake and digestion being controlled by valves and clamps and bags and needles.

On the plus side, this blockage was cleared and she is no longer having any pain.

The chemo will start later this week...since the latest scan shows that the liver lesions are now 11 mm and 8 mm, respectively....when they were so small they didn't even show on a scan a few months ago.

DapperButch · 03-21-2012, 05:10 PM

Quote:

Originally Posted by JustJo

Ugh...so many things have been discussed that she and I BOTH got this wrong. It is a stomach tube, but it is located between the stomach and what's left of the small intestine, and is to control outgoing rather than incoming.

Evidently it will help them clear blockages, and also allow her to cirucumvent the intestine entirely (at will) when she is feeling discomfort.

So...now she is hooked up to 3 bags....TPN in through the PIC line, the original ostomy bag and now the new one....that I don't even know what to call.

Her TPN is increased to about 20 hours a day, and she will never be off of it.

She is feeling like a monster....with every step of food intake and digestion being controlled by valves and clamps and bags and needles.
On the plus side, this blockage was cleared and she is no longer having any pain.

The chemo will start later this week...since the latest scan shows that the liver lesions are now 11 mm and 8 mm, respectively....when they were so small they didn't even show on a scan a few months ago.

Oh, Jo this so sucks. I feel so terrible for her.

It is this kind of stuff that worries me (about me). Yes, the CAT scan I had a month ago said there were no tumors. This was really meaningless to me due to the above. That is what my eating (most often successfully), vegan is all about. The hope is that eating in this way (plus doing some other things), will make my body less hospitable to cancer. The hope is that those small tumors don't grow. I am aware, however, that no matter what I do, it could still happen. Additionally, I am aware that there are people who have undetectable tumors that never grow no matter how they eat or what their lifestyle.

You remain in my thoughts, Jo.

JustJo · 03-21-2012, 05:16 PM

Quote:

Originally Posted by DapperButch

Oh, Jo this so sucks. I feel so terrible for her.

It is this kind of stuff that worries me (about me). Yes, the CAT scan I had a month ago said there were no tumors. This was really meaningless to me due to the above. That is what my eating (most often successfully), vegan is all about. The hope is that eating in this way (plus doing some other things), will make my body less hospitable to cancer. The hope is that those small tumors don't grow. I am aware, however, that no matter what I do, it could still happen. Additionally, I am aware that there are people who have undetectable tumors that never grow no matter how they eat or what their lifestyle.

You remain in my thoughts, Jo.

Thank you Dapper.

I completely hear what you're saying...and it's scary as hell.

The other part of the story though is that my mother has been a Crohn's patient for 50 years....lived on butter, bacon, and....when she was younger....Coke, donuts and chips.

She became nutrition conscious very late in life....and never took good, regular care of her Crohn's disease....starting and stopping medications randomly, skipping checkups and tests, even taking veternarian grade prednisone at one point for over a year because she was "sick of doctors."

As harsh as it sounds, I think she didn't help herself any. By contrast, you're taking the right steps...eating right, supplements, taking care of your health in general...and trust that will make a difference.

Hugs,
Jo

DapperButch · 03-21-2012, 05:28 PM

Quote:

Originally Posted by JustJo

Thank you Dapper.

I completely hear what you're saying...and it's scary as hell.

The other part of the story though is that my mother has been a Crohn's patient for 50 years....lived on butter, bacon, and....when she was younger....Coke, donuts and chips.

She became nutrition conscious very late in life....and never took good, regular care of her Crohn's disease....starting and stopping medications randomly, skipping checkups and tests, even taking veternarian grade prednisone at one point for over a year because she was "sick of doctors."

As harsh as it sounds, I think she didn't help herself any. By contrast, you're taking the right steps...eating right, supplements, taking care of your health in general...and trust that will make a difference.
Hugs,
Jo

Thanks for saying this, Jo. Recently, I have been struggling with seeing the usefulness of not eating the food (read: meat, cheese), that I love. You sharing the part of the story about your mom's tumors originally not showing up, only to show up later reminds me as to why I am doing this. Thank you.

(As an aside, I am aware that not everyone agrees with my belief that eating vegan+fish, helps fight/keep away cancer. No offense/disrespect meant to those who sees things differently.).

Leigh · 03-21-2012, 06:24 PM

I just wanted to show my support for everyone here; I've helped take care of 3 family members in the past who had cancer (all 3 died unfortunately) but I have seen and experienced how hard it can be to care for someone who is ill ~ I offer an ear to listen and a shoulder to lean on if anyone ever needs it :-)

midwest chick · 03-22-2012, 10:42 PM

Just a reminder: Please make sure that your younger family members are educated about gardasill, and the damage HPV can wreck--my niece, Meaganne, will be moving on from this world in the next 24-48 hours due to cervical cancer from HPV, she is 23 years old.

JustJo: I think the term you were looking for is gastric drain--it is frequently placed in the jejunum, but is sometimes placed in the stomach or duodenum. Placement in the areas below the stomach allow for drainage of bile salts, which can ease nausea, vomiting, and irritation.

03-21-2012, 07:35 AM	#1
JustJo Infamous Member How Do You Identify?: pushy broad Preferred Pronoun?: she Relationship Status: Follow your heart; it knows things your mind cannot explain. Join Date: Jan 2010 Location: Southeast corner Posts: 5,633 My Photo Gallery Thanks: 24,417 Thanked 25,404 Times in 4,660 Posts Rep Power: 21474857	Hello all Mom got a stomach tube put in yesterday. The plus side is that it will replace the PIC line that has given her such problems and make it easier to clear the recurring blockages that she's getting...the down side is, well, that it's a stomach tube....so one more port, one more (minor) surgery, and one more thing that is depressing the hell out of her. They delayed the new chemo (for the liver lesions) until they deal with this complication...and no word yet on when that starts again, or if. She is feeling like the whole thing is hopeless, and all she wants is to go home again and get her affairs in order, ship things to my sister and me, sell her house....and then see what's next. I keep reiterating my open invitation to come here for whatever period of time she wants, up to and including the end, but she has very mixed feelings. Honestly, she is more attached to her house and her land than she is to family....and would rather be there as long as she can even if it ends up shortening her life. Her friends are struggling with this as much as I am....but I find myself getting so impatient and frustrated. One called me yesterday at 3 p.m. and talked for an hour and a half....all upset and sad and crying. She was offering help, but also obviously feeling the need to talk about and deal with her own sadness. Part of me understood and was there with her, and part of me was angry that she would do that in the middle of my work day, when I needed to be working, and then upset me so much in the process that I never did get back to it....and had to regroup myself so I could go be there for my son. Before I could even manage that, another called to basically do the same thing. Honestly, part of me wants to just lash out and scream....I am struggling too. Not only with my mother, but with my finances (now with 2 mortgages and 1 income and all the credit obligations I ran up since we moved), with the house (where I have had to be a plumber myself twice....and now have to find about $200 to have the washing machine fixed), just to keep up with the housework, the animal care, the meals....all of the stuff needed in a house this large, which I never would have bought for just myself and my son. Diabetic fatigue hits about 4 p.m. and I feel like I could sleep for a year....but instead I have to keep going, and going, and going. Yes, I know....I'm fortunate that I have a good job with people who are totally supportive of what I'm going through. I'm fortunate that I have a wonderful, happy, healthy, undamaged son....far more than one of my old friends can now say. I'm fortunate that my own health is stable because of my efforts (and sheer luck, I'm sure). I'm fortunate that I have people in my life who love me and care about me. It could be worse. And I know I have some help on the way. But fuck....couldn't they work this out with each other up there? Do they all have to dump their stuff in my lap too? __________________ I'm not tall enough to ride emotional roller coasters

03-21-2012, 06:24 PM	#6
Leigh Infamous Member How Do You Identify?: Femme Preferred Pronoun?: She, Her, etc Relationship Status: Single Join Date: Nov 2009 Location: Canada Posts: 7,767 My Photo Gallery Thanks: 9,029 Thanked 13,024 Times in 4,784 Posts Rep Power: 21474860	I just wanted to show my support for everyone here; I've helped take care of 3 family members in the past who had cancer (all 3 died unfortunately) but I have seen and experienced how hard it can be to care for someone who is ill ~ I offer an ear to listen and a shoulder to lean on if anyone ever needs it :-)

03-22-2012, 10:42 PM	#7
midwest chick Member How Do You Identify?: femme Relationship Status: married Join Date: Nov 2011 Location: here. Posts: 398 My Photo Gallery Thanks: 5,201 Thanked 1,678 Times in 338 Posts Rep Power: 21474851	Just a reminder: Please make sure that your younger family members are educated about gardasill, and the damage HPV can wreck--my niece, Meaganne, will be moving on from this world in the next 24-48 hours due to cervical cancer from HPV, she is 23 years old. JustJo: I think the term you were looking for is gastric drain--it is frequently placed in the jejunum, but is sometimes placed in the stomach or duodenum. Placement in the areas below the stomach allow for drainage of bile salts, which can ease nausea, vomiting, and irritation.