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Shortshanks
Posts: 3
Joined: Mar 2012

Hi everyone I hope you don't mind me butting in as I live in the UK. I do have a holiday home in Davenport Orlando. I have followed your threads since I found this site a few months ago! I must admit that we have the Macmillan site in the UK which is very similar to this site in what it offers. However I do find the message board here more positive and helpful than anything we have within the UK.

I am 48 year old female living not far from Manchester United Kingdom. The hospital where I had my treatment was classed as a centre of excellence for this region for EC cancer so I was very fortunate as people were referred here from approx 70 miles away. I know in USA terms that is close!

Our NHS healthcare is very different from yours we don't really get the option of where or what we get in terms of treatment, we can look for other medical issues at attending a different hospital but for cancer it's not usually possible due to the high cost attached to treatment. Each medical borough gets allocated a specific budget to treat all illness this is worked out using factors such as population, age of population, social depravation etc. So unless someone really kicks up a stink or is terminal a second opinion is not something we do. Of course we can choose to go private if we want this is an option some people choose just to get a diagnosis they then opt for NHS medical treatment. So I guess I was lucky as I was already at the centre of excellence for EC.

So I was 47 when I finally went to the doctors having had swallowing difficulties for 6 months. When I was pregnant with my first born(1988) I had complications which resulted in me having a large breech baby who head butted my gullet up causing me a hiatus hernia. For around 23 years I slept with a large Bottle of Gaviscon(heartburn medication) by my bed. I had several courses of acid phrohibitors (omezopral, Zantac, locech) also proved positive for breath test virus and had treatment for that. Never once was Barrets disease mentioned to me. In fact our practice nurse told me to stop taking the omezeprol! Over the course of 23 years I only ever had one test which was a barium swallow which confirmed my hiatus hernia (1989). I learned to live with my heartburn and reflux over the years.

I never thought it would happen to me! Well it did, my swallowing got worse but reflux went away. At one point I was obese at 238 lbs I got my weight down to 168 lb which it was on the day I was diagnosed. After visiting my Doctor I had an endoscope where biopsies where taken and I was informed by a GI Nurse that she suspected it to be cancer but was surprised given the size of the tumor at how little symptoms I had and how fit I was.

The biopsies come back positive it was cancer I will never forget that date 23rd June 2011 my grandsons birthday. The next day I went to see her again where she told me I would be having another endoscope with ultra sound this time followed by a CAT scan and a PET scan and also a laparoscopy all these texts were meant to stage the cancer. They all happened within the next two weeks I didn't know if I was coming or going.

The staging came back as T4aN1N0 I know you have a different staging anyone knows what this means in American medical terms? It was also classified as " poorly differentiated" whatever that means. However I was told that at the moment it had not developed in any other organs and was confined to my gullet (can't spell esophageal- spell check did that!). So I met with my surgeon who went through the operation details with me.

I remember sitting with the GI nurse and being devastated that I was going to lose my hair I never took in that she was telling me I was really ill, just crying about my hair.

I met with my oncologist who told me I would be starting ECX on Thursday 14th July ( the very day I was supposed to fly out to my home in Davenport) so I had three three week courses of ECX which I believe is the norm. Tablets for everyday Xeldo, cisplatin via an infusion every third week and Euripsin (can't spell it) also via an infusion . Side affects were fatigue, nausea after the infusions and constipation, by the second week my hair on my body all fell out. I had had my head hair shaved short my rational was that if my hair was going it would be on my terms not the "beasts" . Cracking of the hands and feet this was bad I couldn't walk or hold anything due to this. I never had any infections or problems with my bloods. My swallowing had improved so my eating improved however I still dropped to 151 lbs whilst on Chemo. After 9 weeks I had a further CT and PET scan and another endoscope as PET scan showed there was something on my lungs which turned out to be chest infection. In fact each time I had gone for these tests I had had some sort of infection which threw my lymph nodes into chaos. After my rest and managing to get unto 181 lbs I was ready for my operation.

3rd November 2011 I went down to surgery at 8.30 am woke up in the recovery room at 12.15 am had been in there 15 hours I had some evidence of MIE surgery but also a scar running from my breast bone to my tummy button. Also a big scar which started just under my arm n went all the way unto my middle back (87 mental staples were removed after surgery) I spent 3 days on a surgical special care ward then another ten on a surgical ward I must say the care I had whilst I was in hospital was great but we do suffer from not having enough staff in the NHS so getting a bedpan was terrible getting help to get a shower etc terrible. After three days I was allowed soft food however I had a relapse which when thy scanned me showed a gap in the join of my new gullet/stomach. So back to nil by mouth and arms full of antibiotics. This posed a problem as my arms were messed up by the Chemo, they wouldn't keep a needle in, blocking up after an hour or so. I was so glad to be released home I shouted for joy.

In those early weeks I wondered what was to become of me! Eating was so difficult my new innards were causing me heartache, I wondered how I was ever going to cope. I just couldn't get used to my new digestive system something we take for granted but is such a big part of our existence. Dumping oh boy did I find out about this! I was also dairy intolerant not just lactose but dairy. Finding soft foods which didn't sugar or dairy was a chore, is still a chore!

Eventually I figured out what i could n couldn't eat. Sugar still bothers me but hey sugar free items in USA are plentiful. here in UK I think diabetics are forgotten. My weight still has not stabilized I'm still losing I'm 130 pounds now at 5ft 4. Still can't eat dairy!

Foods which upset are
Coffee, sugar loaded things,white bread, dairy, candies and chocolates, cakes, dried fruit, juice, alcohol, bananas, grapes, eggs.

I sit for half an hour after a meal as I find it slows down digestion if I don't sit I get an upset stomach.
Drinking causes me issues n I suffer from dehydration a lot, constipation if anything is an issue.

My scars are healed but if I don't take a pain killer of a night I struggle to sleep.

After surgery my team degraded my cancer to T2N1N0 and said I didn't need Chemo/ radiation as there was little evidence of it's benefits if there is no tumor. I have seen my surgeon who is pleased with my progress, he did prescribe vitamin B12 jabs for me.

I will be having a scan and seeing my oncologist soon.

I just returned from USA last week didn't try my small portion card do you guys know where it works?
Brought a wedge to sleep I have an electric bed at home which is a godsend.
Ate lots of sugar free candy from walmart
Brought back sugar free cake mix from walmart.

Flight does seem to have upset my balance n I wake with a headache since being back.doctor thinks I have sinus/inner ear infection. Of course every pain ache or twinge I get I straight away think it's the cancer back already.

I would be really pleased if you would read my post and respond to anything you find interesting but maybe you have got sick of reading my waffle. I have quite a lot of questions of you all. And wish everyone of you the best wishes and hopes for the future and all it brings .

Sue xxxx

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Welcome Sue, I was diagnosed T3N2M0 in Nov. 2007. I had the Ivor Lewis Surgery in May,2008. Your surgery sounds like mine. I also was in the hospital 13 days. I was fortunate, my husband stayed with me around the clock in the hospital, and did everything for me. The nurses loved him. I didn't have to depend on them, so I don't know if they would have done for me or not. After surgery I lost 99 pds, before it stablised. I have gained back 13 pds. I was overweight when I was diagnosed and I have the fear I'll get big again. My doctor says I probably won't. I am still skinny at 5'6" ,123 pds, but I'm healther than I was before I got sick, so I don't want to gain a lot.
It sounds like you are doing very good since surgery, and you'll continue to improve. Some things will never be like they were before,but we all adjust to our new norm.
Keep us up to date on your progress,
Sandra

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

Hi Sue,

My dad lives in Florida and he had the Ivor Lewis in October of 2011. He was diagnosed T3N1M0. He had a difficult time coming out of surgery and was also in the hospital for about ten days. It was quite the roller coaster ride and I am still so thankful I came on this site to help my dad get any answers he needed from "real" people.
Doctors tend to know how to help you in surgery (which is great) but in everyday recovery, not so much.

Every one is different too, so what helps for one, may not help with someone else. But the great thing is, people say happened to them. The good, the bad and the ugly, but it is out there to help.

I am happy to say 7 months after surgery dad is doing fantastic (overdid it the other day with working, but realized he couldn't handle working as hard as he used to and took two days to rest). They will be coming up here (NH) in June and traveling around in the Motorhome.

We are so blessed to have more time with my dad. Continue to fight the beast and ask questions. I am just a lurker now but continue to pray for all who find themselves on this site.

Take Care and God Bless,
Beth :)

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