Billy was made to feel special from the moment we arrived, the nurses were fab and the auxiliaries made sure he wanted for nothing! Within an hour or so he had them all wrapped around his little finger and was being quite the charmer! He had a dinner ordered just for him exactly what he wanted and they made sure there were lots of snacks in for him with his steroids!
I managed to give Billy a lovely bath and one of our friends dropped him in new pj's so he felt so much better. The same wonderful friend had brought me in a lovely ready meal for tea and some magazines so I felt more at home and loved!! Billy had his toys and TV and was happy.
The nurses came in and sorted out Billy with meds and learnt all his odd habits, he will only have medicine out of a paper medicine cup! Gave me an extra digital thermometer as Billy would only use them not the hospital ones! They explained a bit more about his meds, as it was calmer for all of us I was taking in more!
After tea Dr Martin came in to see us, he was on great form and made us laugh. He had another of the community nurses and she talked to me and settled a few fears and assured us we were in the best place and went through a few things. It felt good to be somewhere quiet where I could shut the door and we could have peace!
We both slept well that night and Billy was excellent about taking his meds. His appetite was growing almost by the hour, one of the side effects of the Dex. More doctors came round in the morning and we were introduced to Dr Martins deputy Mark who was lovely. I felt a lot happier, we were one of a couple of oncology patients not one of many.
I was nowhere near calm and happy I don't think you ever are again after the news we had but I felt safer, a bit calmer and more comfortable here. I even managed to get home for an hour on the Wednesday and that felt so good!! Being able to have a drink and a bath and do some washing, things people take for granted but that you can't do when you are away. I realised that Billy coming home would be such a huge huge deal, things wouldn't be anything like the way they were before he was diagnosed.
Our phone kept ringing or receiving texts, so many people were interested in Billy and how he was coping. It felt so nice to have so many positive thoughts going his way. Being nearer home meant more people could get in, the good thing is there are no real restrictions on visiting so he was able to have lots of different people including some of his school friends which boosted his spirits. It also meant I had some of my closest friends who I was able to talk to and be honest about my feelings to.
None of the nurses minded me crying. I was still breaking down when Billy was asleep or at silly things and they were great. They had a few funny stories or advice for me which helped. One of the best things was the fact I didn't have to see lots of other oncology patients. Sounds odd but I wasn't ready to face all of what Billy was going to have to go through yet, here I could block it out for a little while longer until I was ready.
Billy's treatment was still ongoing, the antibiotics were stopped and the port was healing well. Martin reiterated to me that Billy had a very good chance and they were doing the treatment to cure him not because they thought it might. None of this really went into my head. I was still just wanting it over and done with, I am not sure wether the fact it was going to be 3 and a half years of treatment really registered with me.
On the rare occasions that the reality hit me I was petrified. What was going to happen to my baby boy? Were the doctors being 100% truthful? Why us?
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