Sorry bout the lack of communication but it has been a traumatic couple of weeks in hospital n internet access via dongle is very slow. Without going thru the entire story, i will copy n paste communication with my home group.
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7th. June...........As most know I recently had an emergency Balloon Dilation for swallowing issues namely ''Dysphagia''...performed at my home hospital, where my ''Care Team'' is based..... This was because of the run-around I have had to endure since 2015 under the care of the same well meaning dietician at integrated care rehab. The problem has always been the transition Speech Therapists who never followed anything up that was outside their guidelines.
I believe They often ''summed me up'' as having ''Phagophobia'' >>A Psychological fear of swallowing, rather than a real blockage in the throat and trachea...and the soft food diet and other dinky tests were carried out regardless of my protests.
On Thursday around 4 PM, I got a call from the Specialist, who treated me at Monash and after some small talk, he told me he had some bad news, after they examined the biopsy that was done they found a mass blockage that was possibly cancerous and most likely Cancer of the Esophagus. and he is arranging a Dye Contrast CT for Monday..I asked him and?
?......he said until they have a close look they do not know a course of action...
The scan revealed it was in fact ''Pneumothorax'' caused by tear in Esophagus, when doing the widening....he asked me if i had increasing chest pain and extra SOB..which i have, so he will organise a room tomorrow and wants me back in for observation because he does not want it to leak air more than it has already.....for now i have to start the Prednisone n antibiotics which i already did..
So bag is packed and ready to go if he wants me in tomorrow..Talk about messing with someone's mind..HA..
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During an endoscopy, the doctor can take cells or tissue from your esophagus. The cells are examined under a microscope for the presence of cancer....IF I HAD the correct diagnosis then I would be
Stage II . The cancer has reached the muscle layer or the outer wall of the esophagus. Stages 1-3 are treated by Chemotherapy, Radiation or Clinical Test options.....
The dilation was the correct procedure...it was the biopsy taken during,that caused concern whatever it showed, as i never found out after a 5 min phone call...both times....The reason for the ''Cancer'' call was it ''Could be''....The CT however showed ''Pneumothrox''...as a separate issue that was not considered.....so in a way Good came out of Bad News..but the original scare tested my limits..
....Now the bad is I am in lots of extra pain and can hardly move without gasping for a breath BUT I can eat...
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11th. June.....Currently this is how it stands today so it is a copy n paste..
They dropped in briefly yesterday for a chat n will be back monday if they don't forget....sleeping really well but it is a worry as i cannot stay awake long.....I am over the safety level of Morphine now that is why they swapped with Targin....which Ewan is on....If they do the drain tube in the AM then it will drain the air out of lungs....Got to remember...Those of us with low LF cannot risk anesthetic and that is the drama why they are holding back....
plus they are talking bout a PET scan at another hospital, so basically i have no idea what the plan is yet n i doubt they have either........
suck the air out of the lung so it can inflate...they were/are hoping it would do that by itself if the tear healed.
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No idea what is happening...they are covering up or trying to the fact that their handling of my swallowing was all wrong n it took chris to realise i was in deep trouble.....everything i told them they ignored.......now all the specialists have been in at different times as the pain n tear is getting worse by the x-ray i just had..
the palliative team is coming in tomorrow to see what can be done
the cancer is outpatient at the cancer clinic...but i know and so do they my lungs are too weak for treatment ...
Thank God i have a detailed journal since 2015 recording everything.
yes the pain is a double whammy..my hyperinflated lungs plus the collapsed lungs now....on stronger pain meds incl Targin.....i think.
I bet they have been real interested in reading that journal and see how much info i have already filed..
Peter
i am ok..was getting very depressed but spoke to another one of Chris's Team n told him i was not impressed with how the whole post Biopsy was conducted via 3 min phone calls by this guy named Shawn....who also was going to send me home today...i think he is a younger chinese doctor and not experienced in communication....anyway the top guy n maybe chris as well will meet me tomorrow or tuesday n see what to do......
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17th. June........Sorry been updating people as best i can but been very sleepy and trying to deal with too much at the one time......Yes things change very quickly...now i am just praying i finish 2017 with all my personal issues sorted out...Ha Ha.....gotta laugh..
They have increased the Oxycodone from 2mg - 4mg when needed, so i am pretty doppy all day....i think they have tried to get the tear healed on it's own rather than have a drain tube inserted which, having read about, i can understand why.....plus on both Targin and Morphine as regular pain meds.
Most of these procedures are fairly common but not if your lung function is so low....that is another reason chemo or radiation will not be considered if i get thru this first and then have to deal with the esophagus cancer. fun times and to think i was at them since 2015 about the problem with my swallowing.....
Also they picked up an infection in my x-ray so they want me on IV Antibiotics....
The Palliative People n their physio lady were here earlier as they do not want me to go home yet....i will be moved to an inpatient rehab based on mobility n focusing on breathing techniques to get me back on my feet plus they can suggest the medication that i need.....we went thru some paces n the doctors agree.....so at least things are moving.....
Instead of discharging me to home they will send me to Monash Palliative Care so i can do a program under supervision to get my strength back,...
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FAST FORWARD A FEW.........has to be the nosiest 4 bedder. I have ever had the pleasure to stay at....for once the secret stash of alpraz has come in handy...They are introducing the patients to the new staff and want to know why my ''allergy'' is listed as ''Tea''....had to explain that I am so p'ssed off with always getting tea bags instead of coffee for every meal order....i think it flies straight over their heads...ππ
Yesterday i sorta dummy spat at the 3 wise men in charge of my case...They told me the Pneumothorax had repaired itself and this '' NEW'' infection was the issue and they were doing an IV drip with ''Centriaxolia'' (?) ..yet I was not told about the ''Tear Repair'' and had the IV for 2 days already...After a third attempt to keep the Catheter/PICC..in place they decided to insert a new one last night for the antibiotics, when i told them not to bother and use oral antibiotics.....5 mins ago one of my docs drops in n tells me they will remove it n go oral in case of infection....
....The other Cancer has not even been looked into from a COPD point of view because our low immunity makes it a different ballgame.....I wished him a happy sunday and talk shop monday.
So i joined the Esophagus Cancer Support Group n boy talk about another sad place...but at least i am trying to learn as much so when i meet the cancer therapist, i have some ammunition in my toolbox, so they do not try n flog me off....
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Well today Monday, i should know a lot more....Take care all.