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Sandy B

Barrett's oesophagus

6 posts in this topic

Hi,

 

Sorry I haven't posted for a while, but it has been a rather busy couple of months. The last time I posted I think I had just been diagnosed with Barrett's oesophagus (after an endoscopy on 29th April) and was told to contact my general practitioner in two weeks. The upshot is, the biopsy results showed that I have cancer of the oesophagus. My doctor was not very happy about having to break the news as he felt this should have been done by the gastro consultant who had carried out the endoscopy.

 

Since seeing my doctor things have kicked off big time, I have had so many investigations in the last five weeks that at times I haven't known if I was coming or going.I have had a ct scans, pet scan, ultra sound scan, echo cardiogram, lung function tests, pre op assessment prior to a laparoscopy, an appointment with the oncologist,an appointment with the surgeon, and a further two endoscopies including the ultrasound one. I start on chemotherapy this Thursday, but only 80% strength because of my other gastric problems. I will be fitted with a pic line and come home with a pump which will administer the chemo. I'm going to be having cisplatin and 5FU, two cycles in all and then major surgery. When I was first told about the possibility of surgery after the original endoscopy on 29th April, I thought the consultant meant a Nissen Fundoplication, but it's far bigger than that. The surgery involved will be to remove 90% of my oesophagus and make a new one using my stomach. The op can only be performed if a bed is available in the ITU as I will need a lot of specialist care in the first couple of days after the op.

 

The hardest thing of all is not having cancer, but telling my children (who are all grown up I hasten to add) that I have cancer. I have only just finished telling them, as I have been awaiting all the test results so I would have all the facts and answers or most of them when I broke the news and would hopefully be able to reassure them. With chemo and surgery I have been told by the surgeon that he is confidant of achieving a complete cure, as all investigations show no spread to other organs, although the lymph nodes in my chest are enlarged so these may all have to be removed during the op. In myself I feel ok I think I'm handling it all pretty well, I don't feel at all depressed, in fact I feel quite positive, but underlying it all, I do feel sad for my daughter who is expecting her first baby. Pregnancy should be the happiest time of your life and I feel guilty for giving her this worry, but having said that, I am a very happy bunny as this will be my first grandchild and something to look forward to this year. Also my partner has moved in with me and we are hoping to move in a month or two, so no pressure, so all in all a very life changing year ahead, but at least I will not be going through this alone, phew!!!

 

I don't want a pity party or anything, because I don't feel sorry for myself, because so many good things have and are about to happen this year, but I would love to hear from anyone else who has had this type of surgery and chemo and can tell me what to expect, it is all such at unknown quantity.

 

Hoping you are all keeping as well as can be expected, but for those of you who are not, hugs and spoons to you.

 

Sandy B x

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Oh Sandy~ I am so sorry about the diagnosis. That's a very scary thing and it sounds like the treatment won't be a lot of fun, but it does sound as if there is a solid plan and that's good. I'll start sending spoons right away and keep you in my thoughts.

 

Now, for the important news! :emoticon-congratulations: On the grandbaby!! We recently had our second one and I have to tell you, everything they say about the joys of grandparenting is true. Do you know if it will be a boy or a girl? And when is it due? That's so exciting. Do you knit? Now's the time to take it up. ^_^

 

Warm hugs and all my best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Sandy

 

I'm so sorry you've had this news, I must say you are taking it very well and I'm glad that they've predicted a good outcome.

 

Grand babies are the best, even if they cry every time you pick them up! :blink: Last time we had said grand baby she cried every time I picked her up but stopped if hubby held her. Hmmm....

 

Please keep us informed and take care.

 

P.S. You win the prize for having the most tests ever!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Sandy,

 

I'm very sorry to hear of your diagnosis and am sending you many, many positive thoughts, although it sounds as if you are being incredibly brave and upbeat about it. At least you now know where you stand and have a good prognosis.

 

How exciting to be soon becoming a grandmother!! :emoticon-congratulations: I have no experience with either children or grandchildren, but I'm sure your new edition to the family will bring you a lot of happiness and joy; I sincerely hope so!! :)

 

I shall be thinking of you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Sorry to hear about your diagnosis. Scleroderma has given me Barrett's too, plus I have a family history of oesophageal cancer, so the risk of cancer is a concern in the back of my mind. If I develop it, I hope I will be as brave and positive as you. Please let us all know how you get on with your treatment.

 

Congratulations on the forthcoming happy grandbaby event!

 

dot.

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Hello Sandy

 

I'm also very sorry to read your news, but am pleased that they can create a new oesophagus, and that the disease hasn't spread. You seem to have the right attitude. Many best wishes

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