Hi Everyone, well no good news really, I still feel rubbish and had a really rubbish night. I was up about 12 times.. am so tired.. didn't manage to get a nap today either. Today was quiet as there was no teacher and no play nurse. I didn't feel like eating this morning but had beef caserole in a tin, it was quite nice, although I am getting tired of frozen stuff and things in a tins! When I'm allowed to eat properly the first thing I want is a rare steak and then some seabass!! The physio came down but I was feeling too bad to do anything. The doc came and there is kinda of plan in place which will be confirmed at the doctors big meeting tomorrow. The virus that I have is masking any improvements to my GVHD that the stem cell treatment might have had on me. So its very hard to tell whether I'm getting better as the new virus I have is making me go to the loo all the time, giving me a high temperature and making me feel crampy. I have two options one is to have another biopsy on my gut which will show exactly how much improved my GVHD disease is or go to Holland. I'm hoping is Holland cos I really don't want another biopsy..! I'm feeling much better now that I was this morning. I talked to Lilo and Emma on the phone which cheered me up. I always kinda of cheer up and feel better in the evening for some reason. I really really hope I sleep tonight... will update you tomorrow on the big decision... lots of love Naoise xxx
Hi Naoise
ReplyDeleteReally sorry to hear that your still feeling bad, at this stage you and the loo must know each other very well(maybe more than you would like) We started in an easter camp today and we were playing snatch the bacon I(Sophie) fell and broke my tooth in two and bashed into somebody and bruised my head(other than that it was a good day). I love your t-shirt, we love dogs so much. Do you miss your dogs??? I would love one but not allowed. tonight we will say so many prayers that you feel better and catch up on your sleep.TTYT.
Love
Sophie and Isabelle
xoxoxoxoxoxoxoxoxoxoxoxoxo
Hi Naoise,
ReplyDeleteMargaret again here. So sorry you are still feeling awful and not sleeping. I really really hope you sleep tonight. I'm glad you have ideas about your first proper meal once you are able to eat regular food again. We will keep an eye on your blog to see what the doctors have to say after their big meeting. Your t-shirt looks really nice. The dog is very cute. Keep smiling.
Lots of Love
Vincent, Margaret, Ross, Greg and Luke
xx xx xx xx xx xx xx xx xx xx xx xx xx
Hi Naoise,
ReplyDeletesorry to hear u had another bad night & still not feeling great! Séadna lit a candle for u in church 2day & we said a special prayer for u!
We will be thinking of u tomorrow & hope the Dr has good news for u!
The Beef Casserole sounds nice but i can imagine u must be fairly fed up with frozen food at this stage - the steak idea sounds good!!
(I burnt the sweetcorn this evening - not an easy task haha)
Like the cute dog on your Tshirt!
Take care luv maggie xx
Hi Naoise
ReplyDeleteI'm sorry that you're not sleeping at all well these days. It must be so frustrating for you. When you DO sleep, you must dream about food all the time. It's hard not to think about the stuff that you really want and are not allowed to have. Did you ever have a dream where you woke up, and you weren't sure if it was real or not, if you'd dreamt it, or it had actually happened? Maybe you could try to have a Christmas dinner dream :p
I hope that the doctors will make a good decision for you tomorrow. I have a lovely friend in Amsterdam, called Janna. If you do end up going back to the hospital in Holland, maybe she could give me a few phrases for you to impress the Dutch doctors with? I think that my Dutch would be a bit useless to you, because I learned it when I worked in a restaurant, so I only know the FOOD words in Dutch and things like 'the bill' and 'to pay'. 'Please' sounds like AH-ZOO-BLEEF, and 'Thankyou' sounds like BEH-DANKT. Maybe you could practise on the nurses in Newcastle :)
I was at a gig this evening. It was a band from the north of England, called Maximo Park. The singer's accent made me think of you in Newcastle, and then of Paul Gascoigne singing 'Fog on the Tyne'. I think that you should get your Mum or Dad to sing it for you if they remember it. With the 'dance' that he did with it (it was really just stomping about). I don't think that he'd ever win Pop Idol or Xfactor!
I hope that you'll sleep better tonight.
Lots of hugs
Do chara
Ms Walshe xxx
Hi Naoise,
ReplyDeleteWe have been following your adventure over the past week oe so, well with your holland flight and back to your room in n'castle. we are sorry to see that you have had a few bad nights so hoping that you will have a good night to night. it was great to see the pictures of the flight and back again, you are a STAR !! Well we here are setting of on a camping trip. ( easter weekend ) we go for a 5 hour drive from home and we set up camp. I will let you know how it all goes. We loved what Jack did, he raised lots of money, well done. Hoping you have a better sleep to might. lots of love carol xxxx
Hi Naoise,
ReplyDeleteIm so sorry you had a rubbish night sleep again, being up 12 times is a lot, you poor pet. I really hope you start to get some sleep soon honey. Im sorry about your virus, i hope the big meeting goes well today.
That was so nice of all your class and your teacher to do the Diary for you. Have you read it all yet? I saw Ashlings comment yesterday, she said that jack has raised €1,000 for Temple Street. That is absolutely brilliant. And Ash is right it was Jack and Naoise teamwork that raised all the money! So your dying for some rare steak and seabass, when i came home from Australia the first thing i had when i got home was a saugsage Sambos on batch bread!!
Take care honey.
Lots of love,
Aunty Chrissie x x x
Hello hunny! Just emailing from all the girls here on the dayward. All is very quiet here today for a change and we are all getting set for out long weekend for easter. We havent got any easter eggs yet here which i think is quite shocking!! I hope the easter bunny comes to you and brings you a steak! we are thinking of you as always and hope you will be feeling better soon. This is a very extreem way to get yourself another private jet ride! lol. Talk soon, Tilly and all the girls here on the ward! xxx
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