Failed Surgery and successful Surgery - Saga Continues
Despite all my best efforts, I ended up at the General on friday 18th June in the morning and the sister did manage to get my line working. I drove up myself so was pleased I could do that and felt safe. She told me if I felt no better then to get admitted as I stood more chance being operated on as an inpatient than as an outpatient. I intended to do this after the family photos on saturday.
Fate had other intentions and friday evening I felt ill and kept falling asleep in bed with a cup of tea on my lap in bed. Laura kept waking me up to make sure I didn't drop my tea all over my lap. At 10pm, I felt very ill - it was almost in a labou pain sort of way. My stomach would constrict and loosen like labour pains or braxton hicks. We decided i needed to go in so Pete's parent's came to sit the children and Pete took me to hospital. I got the ward I wanted and was next to a lovely lady so that was OK.
They tried to do a stent via an endoscopy on tuesday but it failed as my tumour has not shrunk around my oesophagus so they could not do it as the hole needs to be at least 12mm and usually is about 3 cm so that was discouraging.
The next bit is about what happened next -
I had my stent put in on wed 23rd - the anniversary of my dad's death so wasn't happy about the timing but glad they had brought it forward as they were saying friday 25th as a maybe but probably next week 27th!!! I think my onc went mad and suddenly it was going to be done that afternoon.I had a ptca (percutaneous trans - something or other) which is more complicated that an ercp. They did not use enough sedation or pain killers and it was the most horrific thing I've ever been through. I could feel them push all these wires through me and kept screaming. In labour, I only ever whimpered!!!It took over 2 hours when it should have been about 40 mins but they told me it was more successful than they had hoped. I didn't feel too bad when I got back on the ward apart from falling asleep all the time and hallucinating a lot. The problem was everytime, I woke up they gave me oromoph even when I felt full of wind. I was able to get out of bed aafter midnight and off to the loo but by 8am the next day couldn't move. I got no help and just kept falling asleep and being given more oromorph!!! By 1030am, they were concerned by the amount of pain I had so organised a chest xray and abdo xrays. Nobody helped me apart from the porter who got me out of bed onto the wheel chair and into the toilet where he had to find me some loo roll. I was in tears by this point and shouted at everybody. Eventually, a student nurse came with me and she looked after me the rest of the day and gave me a bed bath. Since then, my pain has been not so good but it is very much wind pain and I'm severely constipated but it's got trapped on the far side of the bowel so had to have lots of different enemas and tablets - good job it was the bowel cancer reg's ontake team this week!!! Am home to just update myself and hope look less swollen tomorrow. I felt better till had my dinner and now just as swollen again. My jaundice is definately going but it is the wind and constipation that is the problem.Hope to come home mon or tuesday. Radiotherapy has failed on shrinking my solid tumour in my oesophagus but has made my breathing better so glad I can sleep flat now and it has helped my spine and shoulder blade pain so that is good. It is just so disappointing not to be able to swallow anything wider than 1cm hence why they couldn't endoscope me.Meant to be starting weekly taxol this week if bilirubin is OK. I had hoped to start this at end of sept but if a new tumour can appear within 3 weeks and block off my bile ducts I can't take that risk.
This week has been decorating week and I have resisted the temptation to peek in the room so look forward to seeing it next week. Thanks to you all for the organising, actual work and contributions to the task which as usual was the task from hell due to the previous owner's DIY skills and old, cheap bricks and plaster work.
Kids miserable due to heat so glad to be back to hospital I think now!!
Despite all my best efforts, I ended up at the General on friday 18th June in the morning and the sister did manage to get my line working. I drove up myself so was pleased I could do that and felt safe. She told me if I felt no better then to get admitted as I stood more chance being operated on as an inpatient than as an outpatient. I intended to do this after the family photos on saturday.
Fate had other intentions and friday evening I felt ill and kept falling asleep in bed with a cup of tea on my lap in bed. Laura kept waking me up to make sure I didn't drop my tea all over my lap. At 10pm, I felt very ill - it was almost in a labou pain sort of way. My stomach would constrict and loosen like labour pains or braxton hicks. We decided i needed to go in so Pete's parent's came to sit the children and Pete took me to hospital. I got the ward I wanted and was next to a lovely lady so that was OK.
They tried to do a stent via an endoscopy on tuesday but it failed as my tumour has not shrunk around my oesophagus so they could not do it as the hole needs to be at least 12mm and usually is about 3 cm so that was discouraging.
The next bit is about what happened next -
I had my stent put in on wed 23rd - the anniversary of my dad's death so wasn't happy about the timing but glad they had brought it forward as they were saying friday 25th as a maybe but probably next week 27th!!! I think my onc went mad and suddenly it was going to be done that afternoon.I had a ptca (percutaneous trans - something or other) which is more complicated that an ercp. They did not use enough sedation or pain killers and it was the most horrific thing I've ever been through. I could feel them push all these wires through me and kept screaming. In labour, I only ever whimpered!!!It took over 2 hours when it should have been about 40 mins but they told me it was more successful than they had hoped. I didn't feel too bad when I got back on the ward apart from falling asleep all the time and hallucinating a lot. The problem was everytime, I woke up they gave me oromoph even when I felt full of wind. I was able to get out of bed aafter midnight and off to the loo but by 8am the next day couldn't move. I got no help and just kept falling asleep and being given more oromorph!!! By 1030am, they were concerned by the amount of pain I had so organised a chest xray and abdo xrays. Nobody helped me apart from the porter who got me out of bed onto the wheel chair and into the toilet where he had to find me some loo roll. I was in tears by this point and shouted at everybody. Eventually, a student nurse came with me and she looked after me the rest of the day and gave me a bed bath. Since then, my pain has been not so good but it is very much wind pain and I'm severely constipated but it's got trapped on the far side of the bowel so had to have lots of different enemas and tablets - good job it was the bowel cancer reg's ontake team this week!!! Am home to just update myself and hope look less swollen tomorrow. I felt better till had my dinner and now just as swollen again. My jaundice is definately going but it is the wind and constipation that is the problem.Hope to come home mon or tuesday. Radiotherapy has failed on shrinking my solid tumour in my oesophagus but has made my breathing better so glad I can sleep flat now and it has helped my spine and shoulder blade pain so that is good. It is just so disappointing not to be able to swallow anything wider than 1cm hence why they couldn't endoscope me.Meant to be starting weekly taxol this week if bilirubin is OK. I had hoped to start this at end of sept but if a new tumour can appear within 3 weeks and block off my bile ducts I can't take that risk.
This week has been decorating week and I have resisted the temptation to peek in the room so look forward to seeing it next week. Thanks to you all for the organising, actual work and contributions to the task which as usual was the task from hell due to the previous owner's DIY skills and old, cheap bricks and plaster work.
Kids miserable due to heat so glad to be back to hospital I think now!!
Labels: ercp, jaundice, ptca, room decorating
posted by dippykate @ 3:02 PM
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