We headed into emergency on Sunday morning as Oscar had a temperature. I knew it was because he had finally caught the viral infection we have all had but didn't know if his bloods might have crashed or not. When we got there we were greeted by Josh, one of Oscar's favourite nurses, who was surprised to see Oscar so miserable. Even when he had mucositis he could manage to be social - but not today. Mr misery he was.
They put us in the isolation room where we had spent our first day almost 12 months ago waiting to be given the dreaded diagnosis. They then took us to the same treatment room as diagnosis day and, dejavu like, had trouble getting blood from his veins. It was Oscar's first time in hospital without his central line and we sure did miss it. The first attempt didn't seem to really go into the vein and the Dr kept moving it around inside his skin - which he did not like. So they swapped hands had another go and eventually we got there but then she spilt it all over us. I felt sorry for her as she was clearly nervous and overwhelmed.
Given that we are fast approaching the 1 year anniversary of Oscar's diagnosis it was hard not to feel like I was in some kind of weird time warp, given the similarities of experience. I remember on diagnosis day I had been bombarded with an entirely foreign language of medical terms and statistics and I was in such deep shock I couldn't even get close to understanding any of it. I also remember fixating on the one bit of information that seemed vaguely possible to digest - a nurse had said that we would be getting to know the hospital very well. I remember thinking over and over about how I didn't want to get to know this hell of a place well but trying to focus on it as a possibility in my otherwise hijacked-by-shock brain.
It was so interesting to shadow a portion of that day because we certainly do know the hospital very well and have become professionals at dealing with the procedures and inefficiencies that are part of this journey. We knew almost every nurse and doctor we encountered, as well as both of the orderlies. They all knew Oscar, not just by name, but by character and personality. When they lost the bloods that had been so painful to get and they came to tell me I wasn't surprised and I told them, "Don't worry, they will turn up. If not, we will just have to do the procedure again". When they found the bloods 2 hours later but had forgotten to order a chest x-ray (which meant a further 2 hours wait) we just shrugged and focused on creating the little bubble we have become so good at creating. This bubble involves Oscar setting up his DVD player where he wants it, me heading off to the freezer where I know I will always find a tub of ice cream for Oscar, Oscar eating his ice cream and sharing it with me, Oscar naming every object in the room including many medical instruments and me finding out which Oncologist is on duty (we were in luck - it was the Dr most likely to let us go back home if Oscar's bloods were ok) and some other simple things that make us comfortable.
We certainly have come a long way from that chaotic, terrifying, overwhelmingly shocked and anxious day almost a year ago. Its still not easy but we have so many great little tricks to help us through the moments that come our way, random and chaotic as they will always be.
After we finally had the x-ray we ran into a nurse in the corridor on our way back to emergency. She has looked after Oscar many times and stopped for a chat marvelling at how big he has gotten and how she had never seen him so miserable. Everyone agreed - he was not the Oscar we all know and love.
The good news was his chest was clear, his bloods were high and we were discharged on the proviso that we go straight back in the next morning for further assessment. Best outcome ever!
When we got home Auden asked Oscar, as he always does, "Did you have fun at hospital?" Normally the response is "Yes, Oscar saw Donna and Margaret" - it is said with great joy as he loves Dr Margaret and Donna from the clinic like they are family. This time though his response was just as honest and direct. He yelled, "NO, I didn't" and burst into tears. Bless him, it was such an awful time, especially with the bloods being so difficult.
It was a crazy busy day the next day. They swabbed his mucus to test for some of the scarier viruses and checked him over once again.
Thursday he is still scheduled to have his bone marrow. This is the one they like to do 12 months after diagnosis. We will have to wait and see how well he is as he is still a misery and they may not be able to do it. I'll let you know. They expect to see that he is still in remission. Again, I'll let you know when we know.
Take care everyone and thanks for checking in on us.