As the week went on we began to see how much our life would change. I had to get used to the new medicines, how to give them when to give them. We had a lot of hospital appointments for chemotherapy, another lumbar puncture and just for a check up. It is weird how you start to adapt quite quickly to the changes.
You begin to learn where all the wards are, who the staff are and what all the different names for the medicines are. It was so strange to be back learning how to look after your child all over again. I began to quickly work out Billy's little ways of wanting things to be done to make things easy for him. I could tell how scared he was, all of a sudden he had all these people looking at him, sticking needles in him and giving him funny tasting medicines. I hope that I did manage to try and help him with some of his fears and make the time as easy as it was possible to do.
One good thing is the hospitals have play rooms which are full of every kind of toy imaginable, from computers to games consoles to jigsaws to cars. Billy was fascinated with new toys and it took his mind off of some of the nastier sides to hospital visits because he had the playroom to go in and have a look at all the new toys.
I was getting less scared of giving him the medicines and making sure he didn't have a temperature. Every day my confidence in being able to look after him well grew. I am not saying I was 100% sure of everything but I wasn't as scared as I was when we first came home. Billy on the whole was quite co-operative with taking his meds and letting me do temperatures. He did have times though when he wanted some control back over his life and refused his meds. That was scary and so hard to cope with, I knew how important it was to get things done the right way. We started a sticker chart where he would earn rewards for taking meds or having his temperature done which seemed to work really well for us.
All of the staff in the hospitals were great. They could tell that as it was all new to both of us we were both a bit scared and they did everything they could to make us more relaxed and confident about being in. They explained everything and had great ideas with how to do things to make life easier for us. They didn't mind me asking lots of questions and were so patient with showing me how to do things and showing me again!
As well as the local based community nurses there are social workers and a paediatric oncology outreach nurse from Piam Brown who are assigned to you. Our poon, Pippa was amazing she is really down to earth, approachable and honest. I felt that there was nothing you couldn't ask Pippa. She also got in touch with Billy's nursery and school and was going in to train them how to cope with Billy and what to do. I would also be involved in this just so I knew what they were told and if there was anything I felt they needed to know.
The support network was great and much needed especially when you are at the start of the treatment. They understand you, they know how horrible it is. They don't pretend its just going to get better overnight. It is helpful to have that honesty. You need people who give you a true picture of how your life will change so you can start to adjust. They are also fab at telling you when you are doing a good job which again you need to hear.
I was scared still but I knew the help and support was there. It is hard sometimes to ask for help, but the teams we have around us are aware of that. They make a point of calling or popping in a lot at the start just to check on how you are. The amount of tearful conversations i had must have made them think i was mad!!!
The new life was moving on, we had an idea of what the treatment would be like and we were coping ok so far, what was coming next though?
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