…as all the best stories do. On Monday 16th February I went to the Leonard Wolfson Experimental Research Centre, Queen Square, London for my 5th infusion of possibly the first ever treatment for sIBM, Novartis’ innovative new drug BYM338. I always look forward to treatment days. I don’t know why really, as it involves fasting blood tests so nothing to eat after midnight, and a 5.30am alarm. It’s about a 70 mile journey to Queen Square from our home in Oxfordshire, but London traffic is totally unpredictable and this time we were unlucky and the last mile of our journey took an hour through the most horrendous traffic jam – road works apparently, Colin was seething with rage but we finally got there. We were too late to get our usual parking space right outside the hospital door, but found one just round the corner so not too far to walk. Colin asked me if I could get up the kerb, and I sad no I couldn’t, but when I tried I found that I could quite easily so that was a nice surprise.
We finally arrived at the research centre and I trotted off to the loo with my sample jar because you have to be able to pee to order – no problem after a 3 1/2 hour journey. My nurse, Laura, was waiting with weighing scales at the ready as she wanted to get the drug ordered from pharmacy and it’s made up at a certain dose per kg of body weight, so that’s always one of the first jobs. When I first went, it was an unbelievable palaver to get me onto the scales, with one person lifting my foot up onto the platform and two more supporting me while I attempt to heave myself up onto them. This time I stepped straight up, almost like a normal person, so that was another nice surprise.
The drug was ordered, we took up residence in the nice comfy Infusion Room for the blood tests. Just 6 phials to fill this time and the nurse managed to find a vein first time. Then, after the rigmarole of blood pressure/heart rate readings (3 sitting, 3 standing) I could finally have a cup of coffee just before 11 o’clock. Yay!
A Guinea Pig's Tale 