SATS week
I'm now over a week behind with this blog. Last week was hectic so now trying to catch up.
Poor Laura's blood test came back as negative to glandular fever but her white bloods look like they have changed into viral infected ones so probably is glandular fever. She definately acts and looks like this is what she has got. She is so pale, her joits hurt and she is so tired that she sleeps in the day and about 14 hours at night which is unheard of for her. On top of this, this last week was National SATS week. I was quite happy for her not to do them but she has been revising hard and wanted to do them so after speaking to the very helpful and symapthetic deputy head, we arranged she should do them at home. He had asked for her to do them over a longer period of time as there are 2 x 45mins papers a day roughly. he had had glandular fever when he did his Alevels just like I did so he knows how bad it is. The SATS Board were happy for her to do them at home and either write her own answers or get the teacher to write them down for her. They would not let her do only 1 paper a day as they were worried that her twin brother might give her the questions. Honestly, whose reasons is it these poor 11 yr olds are put under so much pressure. The schools hate them, parents hate them - it is only the Government that want them and then the schools need good results because of the league tables!
So everyday, last week, we had the Learning Support Assistant here to sit with Laura while she did her exams and whilst the other children at school had an hours break between papers, she only had about 10 mins. She enjoyed showing the LSA, the guinea pigs and our ponds etc so that was nice for Laura. My mum stayed on to sit in the house as I had various appointments etc that week. We only have a longe diner so poor mum and I were limited to being in my bedroom or outside or sit in the kitchen. It was very odd.
I went to Exbury Gardens with one of my friends on the tuesday. It was lovely and hot and so beautiful. We go most years but this year was definately the best I've seen it. All the flowers were out and the colours were magnificent. We took loads of photos and bought loads of plants. I used my scooter over rather rough ground and it did struggle but it was worth it. It was very busy as they had many coach parties so the tea and loo queue were huge!!
Wednesday - I had an appointment with the neurologist. He was pleased that I now had mmore movement and feeling and less pain but wanted to see me again in 4 months and do another nerve conduction test. They couldn't get me an appointment till october and after I left I wondered why I'd agreed to this as it hurt a bit last time and as nothing had shown and it was improving, I feel I am wasting their time and mine and they are obviously so short on appointments, I don't see the point of going back when someone more needy could have this.
Thursday - mainly covered this in my link and previous post. Was very disappointed and woried though that my last gem/carbo will now be end of June when I so desparately wanted to go through the summer holidays without chemo and with hair. They have discussed me at a team meeting and want to give me rads now to the tumour squashing my oesophagus and to my vertebrae which is so painful. He felt I would get more relief by having 2 more small doses of gem/carbo 3 weekly then having the full dose 4 weekly. I was trying to buy time again. He did say though that they were also understanding why I didn't want to start weekly taxol till end of august and september and so would do what they could to achieve this. Might have to see if I can get them to give me more of the same chemo or the tablet one just for a few weeks to get me through.
Yet another cockup - the consultant cancelled the day 1 gemcetabine instead of the day 8 so ended up waiting about an hour and a half fo pharmacy to make oit up so late home yet again.
Friday - busy day as packing for children to go to grandparents and for us to go to the Isle of Wight. I went into town in the morning and wanted to buy Laaura a newnightie to cheer her up. I went into Primark as they only cost £3 there and I wanted to chase up why I'd heard nothing. this time I saw the proper manager who was surprised I'd not heard anything as the area manager had been over to the shop and all the people involved had been given written warnings. I got the nightie and a pair of socks free so wished I'd put more in my basket!!! When I got home, I phoned HQ and after being put on hold for 10 mins, I got through and they promised me a letter would be out that afternoon. I'm writing this now5 days later and I still have no letter!!! Going into town later so may go in and get them to phone as this is ridiculous and i'm not spending my money on phonecalls when it is their problem!!
Mum went home - it's horrible for us both when she goes as we are both upset so partings are always kept really quick and short so we don't get too tearful.
Hubby home early - children off to grandparents so next bit is the Isle of Wight!!