Evening all,
We have just finished our evening meal and everyone is settled watching television or dozing so I think now is a good time to bring you up to date with what happened last week.
The hospital contacted me after confirming that I would definitely be receiving the trial drug to arrange this weeks appointment. They asked me to travel down on Monday when I would have a blood test then stay down as they had booked me in for my infusion on Wednesday at around three in the afternoon. It would mean missing uni for most of the week but hey it's not everyday you're offered a revolutionary experimental drug that could give me more time on this planet.
The journey down was uneventful and we arrived at Kings Cross on time and got a taxi to the hotel where we would be staying for next 72 hours. It is only thanks to Team Verrico that we are able to do this and we are very grateful to them, they are literally giving me more tomorrows, precisely what the charity was set up to do.
Upon arrival at the hospital we queued up for me to have my blood taken, it's a very efficient set up down here, we take a ticket, wait, then go to one of three little cubicles with it's very own phlebotomist in. I said to the lady 'how do you sit here all day just doing this with no window?' she just smiled and said 'I'm used to it'. I find Newcastle much more relaxed but horses for courses, I guess this system works very well for them.
Bloods duly given (only took two attempts this time) we went off to the hotel for the night. A lovely comfortable base for our visit. It's strange because ordinarily I would be happy to be spending some time in London and would want to go sightseeing. I can't do that though. My mobility is so poor that walking around for any length of time is impossible. Dad was going to spend Tuesday seeing the Imperial War Museum, somewhere he had wanted to visit for a long time. Me? I spent it in the hotel room, I figured I'd catch up on some studying seeing as I was missing most of the week of teaching.
At lunch time I decided to go out to the square just outside as there was a small café, some fresh air seemed good as I'd been nodding off almost as much as I'd been reading. Whilst out I observed everyone getting on with their day, rushing off here there and everywhere. Sitting enjoying time with friends, sightseeing and wandering around with their heads in the sky looking at all the buildings. I so want that back. That ability to just do what I want when I want without having to think about where the nearest toilet is or whether there is somewhere to sit down regularly. I envy them.
Wednesday arrived and we were all packed and ready to go when I received a phone call. I wouldn't be getting the infusion today after all. Someone in America had not signed off the final paperwork to say I could receive the infusion. I crumpled and cried again. Thank goodness my Dad was with me. Not sure how I'd have coped on my own. They said we will do it tomorrow though? Can you stay another night? It's not that easy though is it? Could we even stay in the hotel another night? let alone could we use the same room? We had train tickets booked and paid for which we would be wasting. All this through a charity too. I felt truly bloody awful.
Team Verrico rescued me again. Got the hotel booked, even the same room for the night and rebooked us some train tickets. They really are angels in disguise. I thank each day that a friend mentioned them to me back in the dark days. Back when I knew I was going to die.
We spent the day back at the hospital waiting for some emergency pain relief as I had only bought a certain amount with me. Yes I know. Silly of me. Given my dealings with the trial so far I really should have known better.
Dad got angry and upset on my behalf. Any one would I guess. We went back to the hotel and arranged to meet a friend of his for dinner to help take our minds off everything. It really was a pleasant evening, almost normal, chatting about ordinary things, chatting about cancer, spending time relaxing. It helped.
Thursday came around and we spend the morning killing time at the British Museum although this brought home to me how much I had lost when my mobility worsened. We ambled around and some thoughtful person had dropped seating all over, I've never been so thankful. I sat and looked at the exhibits from afar occasionally getting up to examine one more closely. The old me would have been scampering all over the place drinking in the history of the objects. I did see the Elgin Marbles though!
We got in a cab just after lunch to head off to the hospital. The taxi ride was the ride from hell. The London traffic was proving to be really difficult. Just when we thought things couldn't get worse the phone rang again. The hospital were telling me they were running very late and felt that I needed to stay overnight again and that it would impossible for us to catch our 8 o'clock train again. The tears came again. Getting good at this. I just said 'I can't. I' can't stay another night. I want to go home. we had a train booked. I wanted to be on it.' They said we will see what we can do.
I had resigned myself to arriving and being told that they couldn't treat me until around 6 or 7 that evening. I had decided that if that was the case I would refuse the treatment and just catch the 8 o'clock train home. Even if it meant that I jeopardised my chances of getting the drug in the future I just couldn't stay another night.
When we arrived we were taken up to the ward where they give chemotherapy and surprisingly called through quite quickly. I dared to believe. They say us down and explained that the pharmacy was running very late but there was chance my infusion would be ready for around 5 o'clock. We might yet get that train. We waited. Then a miracle happened the infusion came and we got started. I was so happy! The trial nurse was lovely. All was completed successfully, I was warned of potential side effects and we were able to make our train.
The train ride back was tiring and I felt nauseous but other than that I felt okay. I had got it. It was in my body and doing it's job. It has to work.
After all nothing in life worth having comes easy does it?
