Changes to life

Well we were back home now but how different was our life going to be.  The medicines took a lot of getting used to but we were getting used to them.  The food cravings with the steroids were again a shock but I was getting used to that as well.  I no longer tried to do a weeks shop but went to the shop daily for what ever Billy fancied, sometimes more than once a day!  The cravings were odd, some things I had never really seen him eat before but he loved now.  It cost a fortune, when he was craving sausages and fresh spaghetti i think i was spending nearly £15 a day on food for him!

One of the changes i hasn't really got my head around was not being able to go away.  Although this was explained to me at hospital and I nodded my head and made the right noises that I understood  I don't think it really got through to me until we were home.  WE had a holiday to menorca booked, we were due to go 7 weeks after Billy was diagnosed and I naively asked if we really had to cancel it, was there any chance that Billy would be well enough to go as he was looking forward to it.  The consultant was lovely and just put it gently that he probably wouldn't and the best thing would be to cancel it.

The travel agents were fab and managed to get a lot of the money back and only a bit went through the travel insurance.  I had to sort out his swimming lessons because for obvious reasons, the port, lumbar punctures etc he wouldn't be able to go for a bit.  The manager at the pool, Mel,  was brilliant.  She told me not to worry they would hold his place until he was well enough and I wouldn't be charged, how lovely was that?

I had to sort out his nursery, who again were fab and didn't charge me full price.  I had a birthday party booked for Billy at a local farm park.  They were the only people who were difficult and to this day they still have a half payment for his party.  As Billy is very susceptible to a bug called crypto sporidium which can be fatal to immniosupprssed patients I was advised not to have it till he is better.  He ended up seriously ill after getting crypto sporidium through a school trip so I won't be having it there and I think he will be too grown up for it when he is finally allowed.

I had to get used to travelling with a bag again for billy, like a baby bag when they are younger.  It had to have his blue book, meds etc just so if anything happened I would be able to get him the right care he needed.  It was a scary thing having to check we had things every time we left the house.

I was also petrified of taking him near to many people, we popped into town briefly and the supermarket but tried not to get him near anyone in case they had any germs he could pick up.  I still wasn't 100% sure what everything could mean to us so was slightly paranoid about everything and anything.

Things would get to be routine but those first few days were really shockingly scary.  I was scared of everything I literally wrapped up Billy in cotton wool.  If is was slightly cold he had a hat scarf and gloves on, bearing in mind it wasn't very cold at all, it was may!  If he had a temperature that may have been at all warm I had to check it every ten minutes!  To be honest I was probably a bit of a nervous wreck, god knows what people must have thought about me!

I made sure I ran the cold water for at least 30 seconds before I filled a glass for Billy, rigidly stuck to diet advice from the hospital and did everything that they told us.  Again it was like having a new baby again!  I think even Billy felt a bit suffocated by me asking every ten seconds if he was ok.  I was determined he was going to get better whatever it took.