Actually things aren't that bad and in any case the title is a misquote, the proper quote is below.
My EBV has risen so I'm in DCU all day having an infusion of something called Rituximab which costs a fortune, a £1000 pounds someone told me at the weekend but I haven't checked. I will be here all day, it is a very long slow IVI. I'm hoping for a long boring day, being interesting and causing excitement in a medical setting is not to be recommended!
EBV stands for Epstein Barr virus and causes glandular fever amongst other things. My family has a bit of a history with this particular bug. Most of us have had it and were quite poorly with it. The only medical exam I ever failed was in the immediate aftermath of EBV. My father died of it.
Because both my sister and I have had it I'm vulnerable to it. After you've had EBV it survives in some of the white cells but the immune system normally controls this without any problem. In case you think we Thornhills are peculiar in this respect 90% of the world's population carry this bug.
The reason the EBV has risen is because the increased immunosuppression needed to control the bowel GvHD means my bone marrow is being held back and so is no longer keeping the EBV at bay. It is only in recent years that it has become routine to monitor EBV levels. Before that we didn't really know how to test for it. When new tests came along it took time to work out which tests to use for monitoring, how often to do the monitoring and at what level to treat it.
The treatment can be quite toxic. Reactions to it are common and it reduces all my blood count parameters so this is not a treatment to undertake lightly. Previous normal practice was to treat when the patient became ill. The problem with that is that EBV in immunocompromised patients can make us very ill quite quickly and it can easily become dangerous, "ask for me tomorrow and you shall find me a grave man" as the dying Mercutio quipped in Romeo and Juliet.. So this IVI is very welcome. So far it is going very well, no adverse reactions.
Over the past week my energy levels have improved and my exercise level is getting back to where it was before the GvHD. Yesterday Graeme Walker came round and took me to Gunthorpe. We walked along the river for nearly an hour and a half, albeit rather slowly, and it felt absolutely fine. It was wonderful to be out in the countryside and the fresh air.
At the weekend we had some friends round on Saturday evening partly to say 'thank you' for their support and partly to celebrate Karine's birthday. Alexi and Lucy stayed with us and we had a lovely birthday Sunday lunch 'en famille' with Charlotte, Stewart, Bethany and Eden as well. All in all a very enjoyable and relaxing weekend.
* 'When sorrows comes they come not in single spies but in battalion form'. Hamlet
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