After 11 nights the doctors decided Billy was ready to go home. It was a friday so we would have the weekend with people around and no major treatment. I was petrified. I never thought I would be scared to go home I thought I would be so glad to see the back of the hospital I would be breaking the doors down to go home!
This was the day that Billy's lovely teacher and TA had come in to see him and make him feel confident about going back in. They brought a lovely card that his class had made and there were lots of pictures of the other kids. Billy loved it. His teacher and TA were both so wonderful, they obviously loved him and were so positive around him. We all had a little cry as well.
Billy had started to change a bit, the steroids which he had now been on for a week had started to effect his behaviour, eating and weight. He had become very stroppy, easily getting cross and emotional whereas before he had always been a chilled out boy. His eating habits were very strange, he was eating so much, weird combinations of things too, things that he had never eaten before he was wolfing down. This had an effect on his weight too, he had lost a bit when he was first diagnosed and treatment started but the weight was going on again well.
The day he was due to go home I went with one of my wonderful friends and did a big shop in our local supermarket. Billy at this point was craving ham and cucumbers so I brought that, yogurts, fruit, veg and treats. I thought I had everything we needed. It felt weird going back to normality and doing things like food shopping again. Just getting out of the hospital buying groceries and seeing people felt odd, in the hospital we were so cocooned against everything. The outside world seemed so bright and noisy!
Seeing people I knew out who knew about Billy was another eye opener. Some people were great, came over and chatted, talked about Billy, gave me a hug and offered help. Some literally walked the other way and didn't know what to say to me. This would get better but to start off it upset me a bit as I needed people to support us.
At 5 o'clock the doctors and nurses were there to discharge us, we had a huge bag full of meds and nurse Ali had written a reminder poster for me to get the meds right! Not that I am stupid but it felt better to have it written down in black and white. Waving goodbye to the staff felt so weird and actually quite emotional.
Then we were out of the hospital and in the car on the way home. We got in shut the door and looked around, both of us didn't know what to do to start off with. This is the first time we had been just us for nearly 2 weeks. Billy was pleased to see the TV so he could watch Ben 10 and other cartoon he liked! Not long after we got in he was starving again! this was something else I was going to have to get used to!
It was a lovely sunny evening so I opened the windows and enjoyed the fresh air. We were both exhausted to decided to leave going out and about till next morning. Both of us had a bath, how amazing did it feel to have a bath then chill on the sofa? It was total heaven and the quietness after the hospital was great!
I made sure Billy had the evening meds, the first time was quite scary but nothing as bad as I had built it up in my head! In fact I was quite proud of myself, I had managed it without panicking and Billy had taken it just fine. Maybe being home and keeping the meds and other things right wouldn't be so hard after all.
Our phone rang and rang, it was lovely to know people cared about us and we had all kinds of offers of visits. In the end we just had a couple of close Friends round for an hour and it was nice to see them and be normal and have a cup of tea and a chat!
Then it was bedtime. Heaven my own bed! I was so so looking forward to it and so was Billy. As the steroids cause sleep problems he didn't go straight off but watched TV for a while. Finally he fell asleep! I thought I would be straight after him but no, my mind went into overdrive. The tears came and i phoned my friend. Just being able to talk helped. This was scary. Billy was home but he has leukaemia. That word again Leukaemia.
My head was so messed up, i was so scared and this time properly on my own. All the worst cases scenarios were going through my head. To add to it I was so worried about getting the meds wrong or Billy dropping them and me not knowing. I was worried sick. I was on my own too. It was just me I was 100% responsible for him. Would I be able to do this. I wasn't wonder woman I was just a normal woman.
The tears and fears were there. It seemed to hit me all over again. The blame questions, was it my fault, could I have stopped him getting it etc ? They were all in my head. Suddenly I was wondering if we should have stayed in hospital. Luckily my friend calmed me down and made me think rationally about looking after Billy. I had done tonight's meds
It was like being a new mum all over again. I remember someone saying just do things the way that works best for you. Thats what I had done when Billy was a baby. So within reson I would try that again with this. After all apart from the leukaemia we never really had any problems. Reassured I managed to try to sleep...
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