March 2020
2 Kudos
Hi sch, well first surgery completed Tueeda then home friday. They successfully re mmoved tubiur - waiting. fot confirmation they thInk a gist.. emergency op Sunday night to repair holr and fit feed tube and a visit to icu. . Nil hy mouth for 3 days then need ct swalkae test to rnsure oesophagus is ok. Kind of regretting it all so far. Hopefully my luck will improve soon
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February 2020
2 Kudos
Hi Lindsay, thanks for your plain talk. You are right of course, and thankyou for reminding me that I can talk to this group anytime. 😎
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February 2020
2 Kudos
Hi S, I am having a lesion/growth removed from behind my oesophagus. They don't know what type it is yet bec they haven't been able to do a biopsy. If they can't get it out, I will go back and they will remove the oesophagus too. I used to be able to talk about it all like it was happening to someone else, but as they day approaches I find that I can't do that Jubbly
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February 2020
5 Kudos
I have a date for surgery. 9 sleeps 😳. I am scared witless! I was keeping it together pretty well, but today - oh my goodness. I'm shaking, crying, can't walk in a straight line, it's hard to breath and I can not see reason ( my husbands words). Is it anxiety? I'm freaking out people, sorry but I don't have anyone to blurt this out to.
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January 2020
2 Kudos
update: its either osophageal or gist behind the osophagus. I am terrified. They are saying that its likely that I will need my osophagus removed! Holy moly!! I have never envisioned myself as an old lady, maybe this is why... I trust my doctor, but I just don't know if I can do this. Family support is low. No real friends. Live a lonely life to begin with. This is just scaring the last few away. Sorry peeps, feeling sorry for myself I guess
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December 2019
2 Kudos
Not much support, family are impatient for bona fide diagnosis and treatment, impatient with me and that I can't answer their questions. I have found 2 Facebook groups that are focused on my alleged tumour type and they are terrific! The members know more about the condition than my gp and really understand what I'm going through. Dealing with family and friends is almost harder than coping with the disease. I made the mistake of telling too soon, I would hold it closer and not tell thr extended family as quickly
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December 2019
2 Kudos
Update: Mainly inoperable. Stuck between aorta, eosophagus and spine. Tissue diagnosis as risky as removal. PET scan next month will hopefully shed some light. I'm sleeping a little better but frustrated that because there is no definitive answer, I can't and won't be treated by specific specialist that I need... So, like so many of us on here, I face Christmas and a new year with uncertainty. I send everyone a hug and wish them peace especially as they face the darkness that comes. I knoe that none of us are truly alone.
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December 2019
Hey Ferd 1, how are you going? I'm waiting for someone to agree that I need my gist removed but interested in your experience Jubbly
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December 2019
3 Kudos
hi, I'm just wondering if there are others out there that struggle to sleep at night. It seems like the rest of the world is able to roll over and sleep while I sit in the lounge room and my mind races, like after midnight my brain starts to process all the activities, the tears, the WAITING, the docs - mostly the ones that scratch their heads, what is going to happen, will they risk the operation... sleeping tablets, meditation. Anxiety. Fear. Impatience. Frustration. And all while everyone else sleeps. No help line to chat to, don't want to wake the sleeping. Depression washes over in waves. Scared.
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November 2019
1 Kudo
Hi Kate, well the first trip to the hospital and the doc suggested we wait to see if it gets bigger, hadn't seen the ct scans didn't even know that I had had them. Doc has taken my case to the mdt to see what they think. She believes it is inoperable and unbiopsy-able. I'm stuck in a vortex 🙁
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