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Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


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#1 Sandy B

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Posted 12 January 2012 - 12:29 PM

Hi All,

Haven't posted for a long time. Last time I posted I had been diagnosed with Barrett's Eosophagus which was cancerous, I underwent one course of chemo, which put me in hospital for ten days with severe mucositis and neutropenic sepsis.

Update:- I underwent surgery to remove my eosophagus on the 18th August 2010. The surgery seemed to go ok initially and I was up and out of bed and eating within a few days. Then things started to go downhill, I developed severe pains in my chest which were attributed to pockets of air and fluid on my lungs and a chyle leak. Drainage tubes which had been removed had to be replaced and some!!! I had five in all connected to drainage buckets at the side of the bed which was a real nightmare when I needed to go to the toilet. The drainage tubes caused me so much pain, which extra pain medication could have eased had I so wished, but I was already hallucinatuing and hearing things on the dose I was already on.

My blood works showed I had an infection, so my surgeon decided he would go back in through the scar on my back and try to drain the infection. This was September 1st, two weeks after the first lot of surgery. When I eventually came round the surgeon told me that he had had to carry out more surgery, apparently the top quandrant of my stomach which he had used to create the new eosophagus had died and developed gangrene, probably due to poor circulation, hence the pain I had been experiencing.

I spent six days in ICU, which again didn't pass without drama. On day three, I awoke in the early hours from a deep sleep absolutely gasping for air, I was in quite a panic because I felt I couldn't breathe. The physiotherapist was called down to try and clear my lungs and I had an ecg. The ecg showed a small area of damage to my heart, but the doctor could only say it was either due to a lack of oxygen to that area of the heart or I had had a very mini heart attack. I still don't know for sure even today what happened.

Because of my long stay in ICU and all the complications, it left me very weak and unable to get out of bed. So I needed extra physio to try and get me mobile again. This was a very slow process hampered by all the drainage buckets I had to cart around with me.

At around ten weeks in hospital, I was nearing the point when I was almost fit enough to go home when my bowel seized up completely, my tummy bloating so much I looked pregnant. For another four weeks my bowel refused to move despite twice daily anemas. I had to be put on a TPN drip feed, because there was no where for food to go and I was actually vomiting up bowel matter at one stage. After four long painful weeks the blockage cleared after a flexisig proceedure, just in the nick of time, as they were considering more surgery in the form of a temporary stoma. I blame the blockage on the fact that my movicol had been stopped and my domperidon and ciprofloxicin and added to that, all the pain killing drugs I was on, have the effect of slowing down the bowel.

I stayed in hospital a further two weeks until they were happy I was eating again and the bowel was functioning normally. Who are they kidding with normal bowel function and scleroderma. So the ten to fourteen days predicted before I had the surgery turned into sixteen weeks and I eventually came home on the 28th November. I can't say I enjoyed my stay in hospital, I found it quite traumatic at times, but I have to say a big thankyou to all the nursing staff, other patients I befriended and my friends and family who all made it more bearable and helped me pull through.

What was quite a difficult year, starting with burying my mother of 12th January, ended on a real high note, when my daughter gave birth to my first grandchild on the 25th December, a beautiful little girl. Her middle name is Hope as she gave me so much hope and something to look forward to.

Recovery is slow, but at least I am home and I am alive and kicking and it could so easily have turned out differently.

Wishing you all a Happy and Healthy New Year.

Sandy B

#2 Amanda Thorpe

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Posted 12 January 2012 - 01:17 PM

Hello Sandy

Welcome back girl! Well, that's the best reason(s) to be away from the forums I've ever heard and talk about getting your money's worth! It's heartening to hear the nursing staff and other patients made it bearable and how wonderful to have a grandchild to come home to and enjoy!

It made me laugh that you refused further pain relief as you were hallucinating because I seriously doubt I would have. Many years ago when in hospital recovering from a cystoscopy and biopsy I had to have a spinal nerve block once the anesthetic wore off and everytime the nurses offered me more pain medication I said yes, couldn't feel my legs but hey! I couldn't even keep my eyes open when the doctor came to speak to me! At one point a nurse asked if I really was still in pain I said something like "Aaarrggg..." and went back to my drug induced practical coma. Let me tell you I was outta my gourd for sure but fear does that to you, fear of the pain returning. I'd warned the anesthetist prior to the procedure that IV paracetamol would not be enough, it wasn't hence the nerve block so I figured I'd just take whatever I could but I paid for it with the post pain medication migraine later.

Take care and keep posting because it's great to have you back for sure.
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#3 Joelf

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Posted 12 January 2012 - 02:55 PM

Hi Sandy,

Welcome back to the forums!

Wow, you certainly have had a time of it in hospital with your post operative problems; I'm so sorry. How dreadful it must have been for you!

Thankfully, you sound as if you are recovering now though and how lovely that you've had the birth of a granddaughter to enjoy and give you something to look forward to. It's excellent that you've had such good treatment from the nursing staff whilst you were so ill and also the support of the other patients and your friends and family.

Please do keep posting and updating us now that you're back in the land of the living!! :emoticon-hug:

Best wishes,

Jo Frowde
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#4 Jaggers

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Posted 15 January 2012 - 05:52 PM

Welcome back Sandy, here's to a much healthier New Year and congrats on the safe arrival of your 1st grand daughter.

What a lovely gift to receive on holiday morning!

#5 sherrytrifle

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Posted 20 January 2012 - 07:28 AM

Hi Sandy welcome back. So sorry you had to go through such a terrible ordeal in hospital, and sorry you lost your mum. Am delighted you are slowly on the mend. Your granddaughter will be a bundle of fun and will keep you occupied for sure. Glad you made it home for holiday. Keep us posted :you-rock: :emoticons-yes: