myhusband has just been diagnosed with cancer of the oesophagus

Yes, I am on facebook. Derek has small cell carcinoma. It isn't rare type of cancer but the combination of this type in this situation seems to be rare. I keep wondering whether I should have noticed something wrong. My mother passed away in January, aged 93, and I had been tied up with her care for some years, she had dementia. I feel guilty that she took up so much of my time. Still there is no point dwelling on the past, we have to deal with the here and now. As soon as I let myself think about the 'what ifs' I start to panic, I expect you are the same. Good luck this week for you both and us too. Lesley.

Hi Donna, just wondering how your husband is doing? I've just finished treatment in Hamilton Ontario. I hope things have gone well for you,

All the best,

Nancy

Hi Nancy my husband two weeks ago finished his 10 sessions of radiation and a couple of days ago he started to be able to eat some solid food so that was a definite improvement they did say it would get worse before it gets better and they were right it wasn't till almost two weeks after the radiation before improvement of swallowing.

Today was his first chemo session he is having 3 drugs put into his portacath two they did there the other one he has to keep on and go back once a week to have the bottle changed he has a fanny pack for it. They have sheduled another ct scan for the 24th of Dec and will do another one after 2nd chemo to see how treatment is working.

What kind of cancer do you have and how are they treating you ?  Sorry you have to go through this battle Nancy it has been such a emotional whirlwind and I'm sure it has been for you as well. 

Are you on Facebook Nancy?

Donna 

lim in Pickering Ontario 

 

Hi Donna, Well, haha, life is sure strange. I lived in Pickering from 1981 until 1984. I lived in Toronto for 22 years and then moved to

Brantford for 4 years.

Brantford is very close to a wonderful major cancer centre in Hamilton, which is where I was treated.It is a very very long story but after all my treatment and surgery, I ended up in Trent Hills and now I have just moved to Brighton!! So we're really close

It would take a long time to tell you everything that happened. My chemo and radiation were in May/June and my surgery was July 2/15.

Soooo.......my last Pet scan in Sept was 100% clear. My lymph node were never involved so my tumor was caught early. I had no trouble swallowing but one day I was eating and had to run to the sink and everything came up.

I had 35 years of brutal acid reflux. I was never controlled no matter what I took. In 2010 I had an endoscope and every thing fine. This time not so lucky.

My tumor was right where the stomach meets the esphogus, the GI junction. First I had brachytherapy and then 25 radiation treatments and 5 chemo treatments. That shrunk my tumor by 62%. Left me unable to walk for a week, just shivered in bed with low platelets.

Anyway, the surgery is another story. I don't want to frighten anyone. But... lets say it was much toughter than I thought. It is harder to bounce back the older you are.

So I was on a feeding tube for 3 months. I still miss it, made eating much simpler. Now eating is hard for me.

Best advice I can give anyone having this surgery. NEVER leave the patient alone, especially first week. I was so out of it I don't remember fighting with a nurse,, trying to get out of bed and leave the hospital. I cried non stop. Many of the meds did not agree with me, esp the pain patches. I became delusional, thought I had been kidnapped!! This is not unusual so try to have someone there all night

Sorry, that sent by itself. Anything you want to know, I'll tell you,

all the best,

Nancy

Hi Nancy nice to hear from you well sounds like you have been through the journey first hand and luckily they did find it early in your case.  My husband had silent reflex so he never experienced heartburn it was the swallowing difficulty that sent him to the doctor and by then it was quite advanced and Lympe nodes are involved so they will not do surgery but it will be re addressed after treatments and see how it goes.  

What type of esopagus cancer do you have ? 

My husbands in andencarinoma with her2 negative 

very aggressive cancer and typically comes back the surgeon says so we are hoping to beat the odds.

My father had esopagus cancer and passed in 1997 he battled it for 8 years his was caught earlier because he developed bad heartburn and went to the doctors.  He had the surgery right away and I do remember it being a very major operation and he had his stomach pulled up and the insision was large and they went in through the chest wall.

how are you doing now?  My husband has just begun to be able to eat solids because of the narrowing in his esopagus prevented food to pass so finally he can eat after 10 radiation treatments but it does burn somewhat as it goes down.

are you on Facebook?

Donna

Hi Donna,

Yes, I am on Facebook but not often. I only check it once in a while to see what my friends in the US are doing.

I have about 1/3 of my stomach left so eating is really hard. I get alot of indigestion. It's been 6 months and I still have some pain where the tubes went in the chest wall. My tubes were so awful I can't even describe it. They seemed to rub on my lung, the pain was unbearable. Now I don't even take any painkiller. My side is still stiff though.

My energy is low but I think that is due to not eating enough.

My Doctor says another few months and my system will improve, boy, I hope so. Most people say I look great. I never lost my hair and don't look sick. Just can't get my energy back.

I also had adenocarcinoma. I am negative now but have to get tested and scanned on a regular basis. I have never every been a depressed type of person but now I have to fight to keep from getting down. Today I managed a lovely walk in the woods, thanks to this awesome weather we're having.

Hope you are doing well. I off to have some oatmeal, lol,

nancy

I wish you the very best Nancy through this difficult journey and I pray you get stronger and stronger each day.  I'm sure you will and it takes a long time to get over a big operation that you had but you will. I know for my Dad it was tough for quite awhile but he did get get better and stronger and 5 good years after his surgery.  Take care and stay in touch. 😊

Hi Donna, it's been a few weeks so I thought I would check up on U. How did U and your husband make it through Christmas? It was so warm I walked the dogs and then just watched TV. I had a nice salmon for dinner. Since chemo I still don't eat meat, probably never will again.

I am still living with awful lack of energy but pain mostly ok. Just stiffness on right side.

All the best for 2016 and hope things going ok,

Nancy

Hi Nancy ..Rick is about to have his 2nd chemo treatment on the 30 th of Dec.. He has been feeling up and down everyday is different.. Eating is still a problem everything hurts his stomach when he tries to eat.  

How did you feel through chemo ? He says his stomach hurts when he tries to eat.

He had a nice Xmas all the kids were here.  Weather has been awesome but feeling the cold today. 

Dear Donna, yes, we have had some lovely warm days. Can't last forever but this warm spell will help make the winter seem shorter.

Well, my mom had Breast cancer so my first chemo was awful in a psychological way. First week was ok. Some people are allergic and one lady I met had to be admitted she feel so sick.

Oops,sorry. Anyway, I didn't even answer the phone for a week. I was overjoyed when my 5th week was cancelled due to low playlets. I ate mostly soup, shakes and oatmeal. God bless oatmeal, I still eat it almost every day. Oh, and Pepsi!!!! Makes U burp

Nancy

burp

Sorry, my last post didn't make sense. I meant to say I did ok until week 4 when I went to bed and couldn't get up. Shaking and felt freezing, low playlets do that. But after a week I got better faster. My taste buds are still not 100%. I no longer eat meat of any kind, not even in soup etc. Tastes awful. Just started eggs a few weeks ago.

Give him small things to try and hopefully something will go down with less pain. Dr should give him something for stomach. I have a great drug I take before eating as I get wicked indigestion so I eat very bland food. We made homemade apple cake from our homemade applesauce . That was so good but I can only eat a tiny bit at a time.

All the best 🐾. Nancy

Dear Nancy

If you have low energy with one third of your stomach gone, do try checking your vitamin / mineral levels as a number of people in your situation wil not able to absorb what they should at the same rate, and you may be low in iron and B12.

Hi Alan, actually I lost 2/3 of my stomach. I can only eat 1/2 cup of food at a time. I am starting some vitamins as there is no way my nutrition is good right now. Last week I was fitted with an upper denture so can hardly eat at all. All my remaining upper teeth had to be pulled. Thankfully the bottom teeth ok.

Thanks for your reply, Nancy

You may have to have vitamins in liquid form to help the absorption, and in some cases people in your situation have to have more powerful infusions with the assistance of the hospital.   It is surprising how many people also have dental problems with all this;  as if you have not got enough to cope with!

Thanks Alan. Yes, many people have dental issues after radiation. I had 4 filling fall out in one week.

My lack of nutrition is a huge problem. I'm seeing a nutritionist next week. Meanwhile I just take a vitamin.

very happy New Year!!! 🎆