Last Thursday I drove Mum and dad to University College Hospital in London for an appointment. Dad's myeloma is rampaging away atm, and neither Worthing or Hammersmith Hopsitals can give him any treatment. The drug he hasn't tried is called Velcade, and is recommended by NICE for the first relapse only because it is so expensive (£30,000 + per course). One dr at Worthing has obviously trawled around and has found out the UCH will give it to dad! So this was his first appointment. We weren't sure what we were going for, an assessment perhaps? Would they say today whether they would give it to him?
My BIG worry for the day was driving into Central London and then finding somewhere to park. UCH is just off the A40 - same road as Hammersmith but further into London. So I went round the M25 and along the A40. It didn' look very much further after Hammersmith, but it took us 1 hour! By fluke I managed to drop them off at the door of the building they wanted, and drove away to find a car park. I did find a little garage, (NCP), where you drive the car into a lift and they park it for you! (It was to cost £33 for 6 hours!!!) By this time I felt quite sick with nerves and had a headache, so I stopped in a Starbucks for a coffee before walking back to the hospital.
Mum and Dad were still waiting, so I went into to see the Dr with them. She was really nice and went through Dad's myeloma history. She said that he wpould indeed be able to have Velcade, and recommended a regime of 2 days per week, I week off. That's slightly better than the normal regime, which is 2 days per week for 2 weeks, 1 week off, and will be more manageable as we will have to go up there for the treatment.
She suggested a blood transfer, and thought he might have to stay in overnight, but the support nurse came and said they could do it in a couple of hours if we started now! We folloe=wed her downstairs to the day ward, and Dad was immediately hooked up to the machine! (WOW! Such efficiency compared to Worthing and the blood transfusion las t weekend!) This procedure exchanges the blood plasma for an artificial one, because the myeloma produces very large proteins that cause the blood to be viscous and thus causes poor circulation. WOW! Dad should feel better immediately! Actually, he didn't but that might be because of the stress of the day and the fact he hadn't eaten or drunk anything!
Mum and I left him on the machine and went to get sandwiches. There are several supermarkets on the next corner (Tottenahm Court Road) , so we went in Tesco Express. We took them back and ate them with Dad, then went for a walk down TCRd, and looked in Habitat, and had a cup of tea in a cafe. (loads of coffee shops nearby too - and the British Museum is on the next corner so I know where I will be going next time I take them up!)
We were ready to leave about 6pm. The drive home wasn't too bad compared, we were all very relieved to have got the day over and done with! At least we will know where to go next time, and the staff at UCH are sooooo nice and of course efficient!
I dropped Mum and Dad off at 8.30ish, and was really glad to have a large glass of wine waiting for me at home! PHEW!
As I write this some days later, I feel really positive about these trips. I think it will be very hard for Dad, but can see that he feels hope now, and is therefore much brighter in himself. Mum is happier too. Andrew is taking them up this Friday for another blood transfer, so he will be able to see where it is they go. I am so impressed with the hospital, it really is top hole, second to none! Let's hope the treatment works! But, whatever happens I do think that we have given Dad the very best chance possible, and we'll do all we can to help it all run smoothly.