Suggestions

Daisylin said:

welcome back, fellow Canadian
Glad to see you back... this is a very stressful time for both you and your mom. Glad the surgery went well. You never told us who your surgeon was. Hope it was Dr Fortin, we loved her when we met her for staging.

Have you been getting any assistance from CCAC? They would probably be able to send someone over for counselling. They also do home care, whatever you may need. They are sending VON over for hydration, then next week feeding tube care then after that pain management team will come in. They did ask us about depression, so I'm assuming they must have resources to help people deal with those issues.

Sorry that I can't offer any more suggestions, the feeling of helplessness and anger can be overwhelming. Just be there for her, try to have some fun with her, even if it's just laughing over memories of past events, watching movies, walks if she's able. Sometimes we just need to be distracted, to remember that there is life outside of cancer

Be well,
Chantal

paul61 said:

At this point time is the best medicine
AlexM,

I am 63 years old. I had an Ivor Lewis procedure (the "invasive" procedure) in December of 2009. I know at this point your mother is probably wondering if she is ever going to feel well again. Her incisions hurt, she gets tired after just brushing her teeth and getting dressed in the morning, and eating has become this unpredictable adventure. It can be very frustrating at first, but please tell her it does get better.

I am sure the wait for the pathology report is stressful as well.

Some things to focus on:

1. She was a candidate for surgery and has completed surgery with no major complications. A wonderful accomplishment!!

I was not so lucky, I got an infection in both of my incisions and that extended my hospital stay and healing time.

2. If her surgeon is pleased with the outcome I assume that means she had clear margins around the tumor site and no unexpected metastasis.

3. Even if the pathology were to show some stray cells in one or more of the lymph nodes removed it is important to remember that those nodes are now out of her body.

I had one lymph node with stray cells identified in my pathology report. I did follow up chemotherapy. I will not try to suggest it was easy or fun but it was survivable and I have had clear scans since then.

4. She will feel better and she will be back to doing the things she enjoys and eating the things she enjoys in time. She will have some life style changes required but nothing that can't be tolerated.


So how long will this take?

Of course each person's recovery if different based on age, other health issues, support systems available, and ATTITUDE.

But here is my experience:

The first three weeks out of the hospital consisted of migrating from my bed to the couch with a few short trips around the house for exercise. My incisions were still sore and I was taking oxycodone for pain for the first week. After the first week I switched from oxycodone to Tylinol because oxycodone made my drowsy. I think the first two weeks I slept much of the time. I had a “J-Tube” feeding tube and was augmenting my very small meals with 12 hour formula feedings through the J-Tube. My meals consisted primarily of soft foods like cream of wheat, sugar free pudding, soup, and other solid food that had been puréed in a blender. I found I got tired very quickly and was rather depressed.

I think some light depression is normal at this point, my body had been through a very traumatic event and I was beginning to wonder what my future life style will be like.

Two documents that were particularly helpful to me at this point were a guide for foods to eat and foods to avoid:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

And a guide on how to avoid “Dumping Syndrome”:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

I took some experimentation and life style changes to get used to my new digestive system. But things started to get remarkably better after about two months.

When I went back for my one month follow up visit with my surgeon I was starting to feel a bit better but still got tired very quickly and long car trips and extended walking was still difficult. I had to learn to be patient with myself and accept that I needed to listen to my body. I was rewarded with having my feeding tube removed on my one month visit because my surgeon agreed that I was eating enough to maintain my weight with regular meals.

At this point I was eating very small meals about 8 times a day. For example breakfast would consist of one scrambled egg and half a bagel, lunch would be half a sandwich, and dinner would be a small portion of chicken with mashed potatoes and applesauce. Interspersed with those meals were lots of snacks that consisted of yogurt, sugar free pudding, crackers and peanut butter, etc…

I started follow up chemotherapy shortly after my one month follow up visit with the surgeon. Of course chemotherapy has its own set to challenges and life style adjustments so I won’t spend any time on that unless your mother has to cross that bridge. I would say that follow up chemo slowed my recovery down by about three months both in terms of energy and weight gain.

I should note that I went to surgery weighing 150 pounds and I came out of the hospital weighing about 135 pounds. At one point during my follow up chemotherapy I was down as low as 118 pounds. I have now stabilized at about 130 pounds. I am about 5’ 5” tall.

On my two month follow up visit with my surgeon I was feeling stronger but was still struggling with some eating issues. It is difficult to tell if this was the surgery or the side effects of chemo but I will still having occasional bouts of diarrhea after eating. I found that Lomotil helped but I was wary of eating away from home particularly if I did not know what was on the menu. I started walking about a mile a day at this point. I found getting outside and getting some exercise helped my appetite, my mood, and my ability to rest.

At six months my eating issues were pretty much behind me. I was eating about anything I wanted with some notable exceptions that I will describe later but I was still eating small meals about 7 times a day. I was walking about two miles a day for exercise and I started playing a little bit of golf (my favorite hobby) but got tired after nine holes or so. (About 2 and a half hours if you are not familiar with golf)


At one year I would say I was completely back to my “new normal” self.

I eat all the things I like with the exception it things that are high in sugar content. Anything high in sugar causes me to have a dumping syndrome episode. But I have found low sugar or no sugar substitutes for almost everything I like. For instance I find that EDY’s frozen yogurt makes an excellent substitute for ice cream.

I walk about 4 miles a day for exercise and I am back to playing golf several times a week.

My “lifestyle adjustments” are:

1. No sugar
2. Replace simple carbohydrates with complex carbohydrates (e.g. brown rice, whole grain bread, whole grain pasta…..etc..)
3. Rest at least 30 minutes after eating a full meal
4. Eat small meals frequently (approximately 7 times a day)
5. Sleep with my chest elevated above my abdomen (some people use a wedge to sleep on, I purchased an adjustable bed)
6. Chew all food thoroughly and eat slowly. I put my fork down between mouthfuls to slow myself down. I make sure I swallow the food in my mouth before picking up the next fork full.
7. Take life one day at a time. I have learned only God has control and I thank him for the gift of each day.

I hope some of the suggestions are helpful. I know you mother feels like she is at the beginning of an insurmountable journey. But please tell her it will get better. She needs to be kind to herself and listen to her body. Try to do a little more each day and celebrate small victories.

I hope she will be feeling much better soon.

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
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!