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Having a hard time maintaining positivity

noreeb
Posts: 7
Joined: Feb 2013

It’s 9am. I put on my raincoat, grab the dog leash, and head out into the damp Oregon morning with my collie. As I pass our mailbox, I pull my phone out from my fleece lined pocket and plug in some headphones. The phone rings. My mothers voice travels over the 90 mi from her house to me, while I take my dog on his morning walk. 

 

She tells me that she had a bad night. A bad night used to mean that she didn’t sleep well, or was restless. Now, when I hear her say those words, I know it means something very different. It means that nearly every hour she was awakened by thick mucus coming up her throat, pooling in her mouth and then choking her. It means that she spent time hunched over her kitchen sink while the thick secretions involuntarily rose up from her esophagus and poor out of her. Every two hours she got up and crushed whatever pills she was due to take, mixed them with hot water and then with a syringe flushed them into her feeding tube. When she could, she crawled into her bed, and sitting fully upright, tried to get a solid few hours of sleep. 

 

She’s exhausted. As she is talking to me, I can picture her 98 pound body, sunk into her couch swallowed by layers of blankets. The backpack that holds her feeding tube pump and bag sits by her feet. She tells me, as she has for the last few months, that she’s so tired of being sick. That she can’t live like this anymore. I can hear her voice start to shake. She’s crying. I tell her how strong she is, and how everyday we are one step closer to surgery. One step closer to having that awful tumor removed from her weakening body. 

 

This is our routine. When my husband and I are not staying with her, I talk to her on the phone multiple times a day. I try to make her smile, and encourage her to stay strong. I don’t tell her that I’m terrified that she may not be able to have surgery. That it’s possible for her suffering to worsen before it gets better. I don’t tell her that I don’t know what the next few months will bring, and that the thought of her not seeing her 53rd birthday has taken up permanent residence in my sub conscience. 

 

When we say our goodbyes, I tell her to call me later, and that I love her. I get back to my house, make coffee and breakfast, and try to not surrender to the ever increasing mountain of depressing thoughts piling up around me. 

 

I know that not all hope is lost, but the longer that this whole thing goes on, my positivity is slowly waining. My biggest fear used to be getting in a car accident, and now it’s the possibility of her not being there when we have our first child. I can’t think of anything much worse than watching someone you love so deeply suffer so much for so long. 

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

I know it is difficult to stay positive in the face of all the suffering you see your mother going through.  During my treatment for cancer; between the chemo pump, wound vac pump, and chemotherapy pump, I had a device attached to me 24 hours a day for six months. Then there was the six month recovery from surgery, and learning how to eat eight times a day with my modified digestive system.

 However, after all that, I am still alive and able to be with the people I love.

 Esophageal Cancer is a cruel disease and the suffering it inflicts on the survivor and their family sometimes seems to be overwhelming. People who survive stay positive; through their faith, their inner strength, and the support of their loved ones.

 The talks on the phone with your Mom, and the visits she has with you provide essential support for her as she endures the suffering of treatment to get beyond this disease. I am sure she is very thankful you are there to support her. I know it is difficult to see your Mom in this situation. Try to remember her suffering is temporary and being a candidate for surgery is a wonderful thing with this disease.

I am so glad you are there to be an advocate for your Mom.   

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor 

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

Your comments reflect a deep love and concern for your mother.  This disease and its conclusion are not easily identified.  It is a journey and only God knows.  Paul is right on,  continue your support,  your calls and visits,  and be there as much as possible.  Don't burn yourself out.   Take care of you too.  I am a three year survivor.  I could not have done it without postive support, prayers, family and friend support and modern medicine.  It is very tough, surgery, chemo, side effects, etc  but  I am here and it continues to get better and back to normal.  Get excellent advice and remain strong for her.  Also check out the caregivers board as they will help also.  God Bless you and your mother on this journey and I will contiue to pray for you.

Gerry

DX 2/10

IL surgery 3/10

3 yrs NED 

HarleyDog's picture
HarleyDog
Posts: 13
Joined: Feb 2013

We live in Southerm Oregon, and Dec 1st we were told my wife has stage 4 that has now traveled to other organs and areas. We just finished round 4 of chemo, and will do a CT scan March 8th. They will not do any surgery or radiation. She is a year older than your Mom, and is also under 100 pounds now. I am her only care giver and I still have to work. We have found help through Lovejoy and they come to see her every Thursday to assist us with things in our home. 

I hope you can stay positive, and it is not easy. I am glad to see you are reaching out for information and support. Message me if you want and we can keep each other "propped" up. Even if it is to go outside and yell, or pick the phone up and tell your Mom how much you love her. 

Zoe1
Posts: 26
Joined: Dec 2011

never give up ..even now with my Dad I dont give up it has spread but we are always positive ....to think negative is just too painful anyway. My dad has mucus problem for a longtime after his chemo/radiation we tried everything ....but after a year it gets much better.After chemo he was so weak ....fell down once and the other time we manage to catch him. With mucus Air power from enzymatic therapy helped him a bit i think (but he didnt want to take the suggested dose cause he was afraid of the side effect). Baking soda and salt etc etc but I think at that time no matter what he did no relief from mucus maybe it was just a phase, hangin there ..after almost a year it gets better if not before. And Prosure helps with weight...coconut water with the cocconut etc 

We are still fighting , we will never give up ....I gave my dad whatever they say is good for cancer patient. Our onco almost gave up on him but I think because of what we did supplement/diet etc he is still ok even though a bit weak by the grace of God even with spread. 

Am now researching on cannabis ..seems promising.

Hope your mother get better and stronger day by day. ( remember to get ill it happens very fast but getting better is a slow process..takes time)

 

Zoe

 

 

 

 

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