Our appeal against the insurance being rejected has been won. I was pretty confident we’d get through this but I’m surprised and releaved it was so quick. One thing less on our minds for sure.
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Our appeal against the insurance being rejected has been won. I was pretty confident we’d get through this but I’m surprised and releaved it was so quick. One thing less on our minds for sure. Of outside and inside my hospital room. And outside again. Chemo progresses. No new news on results but I’m sure people are working on the various biopsies. My complaint about the hip biopsies has gone into the system and will be formally processed. I now feel a bit bad but they’ve acknowledged this as terrible (their word) treatment and I feel it was the right thing to do. We have a bit of a battle on with the insurer as they’ve initially rejected paying for this chemo program. However they have responded well to appeal, we’ll see how this goes. Mike from Callisto warned us there would likely to be a battle over this but we feel by having the consultants department deal with this and have to docs thrash it all out (ie not us) we have a much better chance. The really nice surprise is that Ben and Amy have come over for a few days. They get to see me of course but as they are planning to work here for a while soon it’s good for them to get to see a few areas too and people from Ben’s work. It’ll be a good visit for them and helpful for Helen as she won’t be alone at home for a few days. Ben and Amy were with us for most of the day before leaving just before 6 for a fast train home. R-IDARAM is the name of the program I am now on. The active drugs are : Rituximub I’m on few other pills to protect me from some of the effects of the above drugs. I have now had the first drug. They administered it slowly measuring my blood pressure every 15 mins. This is because some people have reacted badly in the past from the drug. They gradually stepped up the flow rate (it was intravenous) but there was no bad reaction. That means on subsequent rounds they can start at the highest flow rate. I think the rest of the drugs will be administered today. Not looking forward to the Dextamethasone. If I end up writing a 10 page blog entry at 3am you’ll know what way I’ve gone on the drug. It will take up to a week for the drugs to be delivered then cleared from my system. They also want me at hand to keep a regular check on me post delivery. They are now suggesting I will remain in hospital for 3-4 weeks. A bit of a shocker that one. We will see what we can do. Perhaps move to a hospital nearer to home for the latter monitoring phase. We’ll see. And report of course. And all this is just round 1 of however many we don’t yet know. We’ve had a couple of doctors’ interactions. The first with the skin specialist over the phone and the second with Prof Linch face to face. The long and the short of it is that I don’t have Leishmaniasis. I have a B-Cell Lymphoma, related to the Epstein-Barr virus somehow, expressing itself on my face. The specialists examining my brain tissue won’t let a square peg into a round hole and are saying the brain tissue does not exhibit B-Cell lymphoma. So do I have two separate and rare lymphomas? Or something not yet fully understood. There are more test results due in over the next few days but the Prof things we need to start treatment ASAP. So here I am on the 15th floor of UCH watching the sunset over west London from my fabulous |
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