Chapter 21 - another visit to London
In my last blog post I said it looked like I might need to leave the experimental (monoclonal ab) trial, because of my deep-vein thrombosis. However, on Thursday evening, the Marsden team phoned me and said that they would like me to come to London after all, with a view to giving me the Ramucirumab treatment one day late, on Friday 18 March.
So, I lined up a taxi and asked my kind travel companion Edmund if he could help me with wheelchairs and so forth for the day. British Rail did a very good job of laying on wheelchairs in Cambridge and London. We got to the Marsden before noon on Friday. After a wait, we got a wheelchair and got to the medical day unit. Then after another wait, my blood samples were taken. Then I met a doctor who had seen my blood results from Cambridge (from Wednesday) in which a very high concentration of "ALP" was a concern. She thought it was likely that given both the ALP measurements and my DVT, it was unlikely that they would give me treatment after all. Then there was a very long and sometimes uncomfortable wait for the Friday blood results to come through. It turned out that my bloods had been lost in the hospital's pneumatic delivery system. Finally at about 4pm, the blood results arrived, and the high ALP levels were confirmed, and we were sent back, at rush hour, to Cambridge.
What a pointless day it turned out to be! I would much rather have stayed in bed. And the information about the ALP measurements was already available on Wednesday.
The one benefit from the outing is that the ALP issue is now getting attention. What does it mean? ALP can mean either bone disease or liver obstruction. There are no other indicators of liver malfunction, so liver is unlikely. So the lead hypothesis, which may be investigated in 3 weeks' time, is that there is something going on in a bone somewhere.
The thrombosis is still hurting quite a lot if I try to walk. Hopefully we will be able to go on holiday soon anyway.
In my last blog post I said it looked like I might need to leave the experimental (monoclonal ab) trial, because of my deep-vein thrombosis. However, on Thursday evening, the Marsden team phoned me and said that they would like me to come to London after all, with a view to giving me the Ramucirumab treatment one day late, on Friday 18 March.
So, I lined up a taxi and asked my kind travel companion Edmund if he could help me with wheelchairs and so forth for the day. British Rail did a very good job of laying on wheelchairs in Cambridge and London. We got to the Marsden before noon on Friday. After a wait, we got a wheelchair and got to the medical day unit. Then after another wait, my blood samples were taken. Then I met a doctor who had seen my blood results from Cambridge (from Wednesday) in which a very high concentration of "ALP" was a concern. She thought it was likely that given both the ALP measurements and my DVT, it was unlikely that they would give me treatment after all. Then there was a very long and sometimes uncomfortable wait for the Friday blood results to come through. It turned out that my bloods had been lost in the hospital's pneumatic delivery system. Finally at about 4pm, the blood results arrived, and the high ALP levels were confirmed, and we were sent back, at rush hour, to Cambridge.
What a pointless day it turned out to be! I would much rather have stayed in bed. And the information about the ALP measurements was already available on Wednesday.
The one benefit from the outing is that the ALP issue is now getting attention. What does it mean? ALP can mean either bone disease or liver obstruction. There are no other indicators of liver malfunction, so liver is unlikely. So the lead hypothesis, which may be investigated in 3 weeks' time, is that there is something going on in a bone somewhere.
The thrombosis is still hurting quite a lot if I try to walk. Hopefully we will be able to go on holiday soon anyway.
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