'Steroid Hell' Tuesday, 24 May 2011 at 21:29
Taken from original diary on Facebook
I've got to say I'm soo pleased that today is nearly over. Charlotte has been asleep for just over half an hour, so I shall get myself a yummy cup of hot chocolate & some biscuits when I've finished this and then get my head down.
Today has been absolutely awful...I was told that Charlotte's steriod med may make her a bit stroppy....she can be stroppy at times as it is (as can most children, parents would say! lol), I also wasn't sure how soon it would happen but boy it hit me like a steam train today. 14 hours of keeping patience, maintaining normal discipline (& self-control in a public place! lol) was soo hard when confined in a 12 foot square room with a unsympathetic Father (who is obviously not used to occupying a child for such a long time) and on a ward with poorly children. I spoke to a couple of the other parents & they confirmed Charlotte's behaviour was just as they have seen in their girls earlier in their treatment...so thank goodness they didn't think my child is a nightmare. In my pack there's even a leaflet about the specific steroid entitled "A self help guide"...help to parents in managing the behaviour of children during maintenance treatment...only problem is Charlotte isn't at maintence yet and we're stuck in strange surroundings, nowhere to escape to and still trying to come to terms with everything....stressful doesn't even come close. But...we got through it in the end and managed to talk her down this evening, give her a few cuddles and make her laugh & thankfully she dropped off to sleep.
Our room mate is a tiny little 2 1/2 year old who is very weak from the effects of his illness at the outset, he is in bed or in his dad's arms most of the time and apart from the occassional whimper doesn't make a sound.....in other words the complete opposite of what Charlotte was today, kicking, screaming, shouting etc! His Dad is a practising Muslim and tried again to 'hook' me into Islam asking if I minded if he brought me in some books about it. I kindly declined saying I totally respected he had his faith but I had mine & I believe in Jesus as the Son of God and what he did for me. He accepted it and we moved on. He is very nosey though and keeps asking things about my husband, did I used to have a husband & such like!!
The clic (Cancer & Leukaemia in children) Sargeant Social worker saw me today, they help liaise with the outreach nurse throughout and also help with ensuring we get grants & allowances we're entitled to and arranging any other practical help we may need. We then also met a POON nurse who can liaise with anyone we deal with & are a there to support in anyway she can. I still have to meet our outreach nurse who visits us at home and liaises with both Poole & southampton over the medical side........so many different people but its great that so much attention is paid to all needs.
Praying tomorrow is a better day with a bit more smiling & a few less tears..from Charlotte as well
Our room mate is a tiny little 2 1/2 year old who is very weak from the effects of his illness at the outset, he is in bed or in his dad's arms most of the time and apart from the occassional whimper doesn't make a sound.....in other words the complete opposite of what Charlotte was today, kicking, screaming, shouting etc! His Dad is a practising Muslim and tried again to 'hook' me into Islam asking if I minded if he brought me in some books about it. I kindly declined saying I totally respected he had his faith but I had mine & I believe in Jesus as the Son of God and what he did for me. He accepted it and we moved on. He is very nosey though and keeps asking things about my husband, did I used to have a husband & such like!!
The clic (Cancer & Leukaemia in children) Sargeant Social worker saw me today, they help liaise with the outreach nurse throughout and also help with ensuring we get grants & allowances we're entitled to and arranging any other practical help we may need. We then also met a POON nurse who can liaise with anyone we deal with & are a there to support in anyway she can. I still have to meet our outreach nurse who visits us at home and liaises with both Poole & southampton over the medical side........so many different people but its great that so much attention is paid to all needs.
Praying tomorrow is a better day with a bit more smiling & a few less tears..from Charlotte as well
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