Woke up this morning still feeling terrible. My mouth is really sore and my throat is too.
The doctor has been and had a look at me, and he said he can't start the chemo today because the mouth ulcers are too bad. He is trying to speak to my surgeon today to see if I can have the operation without the last week of chemo, and then catch up afterwards. He is also keeping me in today and tonight and will have a look again in the morning. If my mouth is better, he will do it, and then I will still be clear by Friday, ready for the operation Monday.I have been disconnected from my drip, so at least I can walk around and go to school today. It is really boring in here today, because all my friends are in Stanmore having their operations already this morning. There is only 1 other girl here who I don't know, and she keeps her curtains drawn all day!!
I am keeping myself busy by painting a pottery snail. Miss Duffy, my teacher, has also sent me in a car to make (it was D & T week at school last week!!) I might do that tomorrow.
I will write more tomorrow when I know what is happening.
Monday 30 June 2008
Sunday 29th June 2008
Woke up this morning feeling terrible! I had a really sore throat and mouth ulcers. AND a tummy ache!
I was going to go to the cinema this morning with mum to see Chronicles Of Narnia - Prince Caspian, but I wasn't well enough so I spent all day in bed. I didn't even draw the curtains!
At 6.30pm we went in to hospital again for my last week of chemo before my operation - the doctor had a look at me, and was going to get the senior doctor to decide whether or not I could have the chemo when he came round in the morning.
I didn't have a very good sleep, and was up about 5 times because my throat was so sore.
I was going to go to the cinema this morning with mum to see Chronicles Of Narnia - Prince Caspian, but I wasn't well enough so I spent all day in bed. I didn't even draw the curtains!
At 6.30pm we went in to hospital again for my last week of chemo before my operation - the doctor had a look at me, and was going to get the senior doctor to decide whether or not I could have the chemo when he came round in the morning.
I didn't have a very good sleep, and was up about 5 times because my throat was so sore.
Saturday 28 June 2008
Saturday at home 28th June 2008
Saturday spent at home - yippee!! Didn't wake up until 11am - lovely to sleep in my own bed.
When mum came back from picking Katie up from school, we went to Tesco's, then went to Pets At Home to get my fish for my new aquarium. I went last week but the water wasn't right - they tested it today and its OK. I bought 5 tetra neons to start with, and I'm going back next week to get some more if they are OK. We had spare ribs and special fried rice for tea and then watched Who Dares Sings on ITV - it was very funny and mum thought she could do better than everyone else on the programme!!!
When mum came back from picking Katie up from school, we went to Tesco's, then went to Pets At Home to get my fish for my new aquarium. I went last week but the water wasn't right - they tested it today and its OK. I bought 5 tetra neons to start with, and I'm going back next week to get some more if they are OK. We had spare ribs and special fried rice for tea and then watched Who Dares Sings on ITV - it was very funny and mum thought she could do better than everyone else on the programme!!!
Friday 27 June 2008
Went for a trip to Sainsburys in between blood tests - first time outside since Sunday!! AND it was raining!Got the results of my chest x-ray and its fine, so I can go home - finished my blood tests, and just waiting for Dad to pick us up.
GUESS WHAT?? - 'Mrs Fix it' has got me and mum 2 tickets for High School Musical at Hammersmith Apollo next Saturday!!!! OMG!!!! I'm so excited!!! So is mum- she hasn't had to pay for them.........!!!! And I'm going to get my fish for my aquarium tomorrow.
GUESS WHAT?? - 'Mrs Fix it' has got me and mum 2 tickets for High School Musical at Hammersmith Apollo next Saturday!!!! OMG!!!! I'm so excited!!! So is mum- she hasn't had to pay for them.........!!!! And I'm going to get my fish for my aquarium tomorrow.
Friday 27th June 2008
Mum had to wake me up at 8 o'clock this morning because I was supposed to have a GFR test at 9am. But instead I went for an MRI scan. You lie on a bed and go inside a big machine which is really noisy. They took a few pictures of my leg, and I had to lie really still.
I came back to the ward and Loucas put a canular in my arm for my GFR test. It really hurt, even though I had special cream on. It didn't last long though, and its over now. I just have to wait for my blood tests every hour for 4 hours!!
I had a pain in my ribs today and the doctor thinks I might either have pulled a muscle in my ribs, or have a slight chest infection, so I have also been for a chest x-ray. It was really quick and I'm back now.They will have to give me antibiotics if its a chest infection, and I might not be able to go home-lets hope its not!
The teacher came to my room just now and did some maths - BORING!!!! I'm just about to play Crazy Bugs with mum now she's gone!
I came back to the ward and Loucas put a canular in my arm for my GFR test. It really hurt, even though I had special cream on. It didn't last long though, and its over now. I just have to wait for my blood tests every hour for 4 hours!!
I had a pain in my ribs today and the doctor thinks I might either have pulled a muscle in my ribs, or have a slight chest infection, so I have also been for a chest x-ray. It was really quick and I'm back now.They will have to give me antibiotics if its a chest infection, and I might not be able to go home-lets hope its not!
The teacher came to my room just now and did some maths - BORING!!!! I'm just about to play Crazy Bugs with mum now she's gone!
Thursday 26th June 2008
Hopefully my last day on hydration - I'm fed up and still feeling sick. It always makes me feel worse being attached to the stupid drip stand and having to go to the loo all the time. The doctors saw me this morning and said I have too much fluid inside me and have given me a tablet to go the loo EVEN MORE!! AAAAHHHHHH!!!!!
I went to the play room at 10.30 and made a boat with plasticine people in it. There was an artist in today to help with the crafty things. She comes in every 2 weeks.
This afternoon I went to school on T12, and there was a lady there from the Wellcome Trust who showed us how to make secret keepsake books (they look like books, but when you open them up, there is a secret compartment to keep secret things in!). I started mine, and I am going to finish it tomorrow afternoon before I go home.
Uncle Bob was in my room when I got back, so I showed him all the things I made in hospital.
At 5.30pm, Jenny the nurse came in and unhooked me!! Yippee. My methotrexate level was 0.19 so I was clear. Then the ward sister told mum and me that we would have to go back to T11, and get out of our nice room with a telly! We packed up our stuff and then went to visit my friend Rose who is having her operation on Monday. (Poor Rose might have to have her leg amputated, so she is very scared). We tried to cheer her up, and told her we would be in hospital for her second week, so we would be together again for a little while before we come back to UCH.Got back to T11 at 10pm, and went to sleep!
I went to the play room at 10.30 and made a boat with plasticine people in it. There was an artist in today to help with the crafty things. She comes in every 2 weeks.
This afternoon I went to school on T12, and there was a lady there from the Wellcome Trust who showed us how to make secret keepsake books (they look like books, but when you open them up, there is a secret compartment to keep secret things in!). I started mine, and I am going to finish it tomorrow afternoon before I go home.
Uncle Bob was in my room when I got back, so I showed him all the things I made in hospital.
At 5.30pm, Jenny the nurse came in and unhooked me!! Yippee. My methotrexate level was 0.19 so I was clear. Then the ward sister told mum and me that we would have to go back to T11, and get out of our nice room with a telly! We packed up our stuff and then went to visit my friend Rose who is having her operation on Monday. (Poor Rose might have to have her leg amputated, so she is very scared). We tried to cheer her up, and told her we would be in hospital for her second week, so we would be together again for a little while before we come back to UCH.Got back to T11 at 10pm, and went to sleep!
Wednesday 25 June 2008
Bobs Egg!!
Katie came with me to school this afternoon, and we made an animation film. I made a robin, an egg in a nest and a snail. The film was called Bobs egg. It was about a bird called Bob, protecting his egg, and a snail comes along and runs over it. The egg is not broken, but Bob gets angry and knocks the snail over with his beak.The snail makes an unhappy face and runs away. Its really good!!!
I'm still feeling a bit sick but I have managed to eat half a bowl of chunky chicken and pasta. I feel like its going to come back up, but so far it hasn't!! My blood level is 0.68 of methotrexate today, so its not low enough to come off my hydration. It has to be 0.2 or below - I should be OK by tomorrow afternoon!! Yippee!! No more getting up every 2 hours through the night for the loo!!
I've got an MRI scan on Friday and also a GFR test (kidney test). Chris Henry, my specialist nurse who sorts out Stanmore (where I am having my operation) told us today that I will be having my operation on 7th July - thats only 12 days!! Aaaaahhhh!!! She said I will be having a new knee as well, but I will be keeping my kneecap. She's going to bring a picture of the scan next week to show us what will happen and also show me what my false knee looks like before it goes in. I will be like the bionic woman!! Grandad has half a false knee, so I will be one better than him!!
I'm still feeling a bit sick but I have managed to eat half a bowl of chunky chicken and pasta. I feel like its going to come back up, but so far it hasn't!! My blood level is 0.68 of methotrexate today, so its not low enough to come off my hydration. It has to be 0.2 or below - I should be OK by tomorrow afternoon!! Yippee!! No more getting up every 2 hours through the night for the loo!!
I've got an MRI scan on Friday and also a GFR test (kidney test). Chris Henry, my specialist nurse who sorts out Stanmore (where I am having my operation) told us today that I will be having my operation on 7th July - thats only 12 days!! Aaaaahhhh!!! She said I will be having a new knee as well, but I will be keeping my kneecap. She's going to bring a picture of the scan next week to show us what will happen and also show me what my false knee looks like before it goes in. I will be like the bionic woman!! Grandad has half a false knee, so I will be one better than him!!
Wednesday 25th June
After waking up 3 times in the night to go to the loo because of all the fluid I have to have to flush out the medicine, I woke up this morning not feeling very well. I couldn't eat anything but managed to have some juice.
I went with the physio to the gym, and went on the balance ball to strengthen my leg, then played a bit of tennis with mum. It really wore me out so I went back to the playroom after about 20 minutes. I started to do silk painting with the play specialist Jessie (she's really nice), but felt too tired and sick to finish. I am going to finish it later in the teenage unit.All this medicine is making me feel so ill, and because I'm not eating anything, I am feeling a bit weak.
When I got back to my room, I just made it in time and I was sick and felt terrible. I had a bit of a rest, and had some medicine in my Hickmann line to make me feel better.The nurse took my blood test to see if I was clear of the Methotrexate that I had on Monday, and then I went to school with Katie.(she has come to see me today before going to play hockey)We are doing animation with Dino this afternoon.
After waking up 3 times in the night to go to the loo because of all the fluid I have to have to flush out the medicine, I woke up this morning not feeling very well. I couldn't eat anything but managed to have some juice.
I went with the physio to the gym, and went on the balance ball to strengthen my leg, then played a bit of tennis with mum. It really wore me out so I went back to the playroom after about 20 minutes. I started to do silk painting with the play specialist Jessie (she's really nice), but felt too tired and sick to finish. I am going to finish it later in the teenage unit.All this medicine is making me feel so ill, and because I'm not eating anything, I am feeling a bit weak.
When I got back to my room, I just made it in time and I was sick and felt terrible. I had a bit of a rest, and had some medicine in my Hickmann line to make me feel better.The nurse took my blood test to see if I was clear of the Methotrexate that I had on Monday, and then I went to school with Katie.(she has come to see me today before going to play hockey)We are doing animation with Dino this afternoon.
Tuesday 24 June 2008
Week 9 - Operation looming!
Monday 23rd June 2008
Back in UCHL for another week of chemo, but this time we are staying on the Teenage Cancer Unit on the 12th Floor. Mum and I have our own room, with a plasma telly that doesn't go off at 9pm like downstairs!! At least I can still watch Big Brother now. We have our own bathroom and toilet too, with a shower with goldfish on the walls!
Chemo started at 12 and by 2pm I was throwing up all over the bathroom floor because the sick bowl wasn't big enough!! Nice!!!
Slept from 4-8pm, and then felt better.
Tuesday 24th June 2008
Feeling a bit better this morning although I don't want to eat anything. Went to the playroom and decorated a mug for mum to have her tea in.
Tried Wotsits during school this afternoon but didn't really enjoy them! Learnt about time at school, and also had a music lesson. Dad came and visited and said I was mad - must be all the medicine I have to take - I'm a bit hyper this evening! Someone has stolen all my microwave dinners out of the fridge so I've sent mum out to buy chunky chicken and rice.
Just eaten it and it was lovely-better than hospital food.
Fed up having to take phosphate every 5 minutes - it tastes disgusting! We've tried to mix it with water, squash, milkshake,but it still tastes horrible. We've now put it in coke, and I'm trying to drink it, but its nasty! The nurses say I have to have it 3 times a day because my phosphate levels are too low, and they need to be higher.
The doctors have told me my operation will be on the 9th July, which is only 2 weeks tomorrow - SCARY!! At least my pesky lump will be gone though.My friend Rose downstairs has been told that she might have to have her leg amputated when she has her operation on Monday - she is scared - I would be too!
I am going to play tennis with the physiotherapist in the morning in the gym at the hospital - I'm well excited! I'll write tomorrow and let you know how I did!
Back in UCHL for another week of chemo, but this time we are staying on the Teenage Cancer Unit on the 12th Floor. Mum and I have our own room, with a plasma telly that doesn't go off at 9pm like downstairs!! At least I can still watch Big Brother now. We have our own bathroom and toilet too, with a shower with goldfish on the walls!
Chemo started at 12 and by 2pm I was throwing up all over the bathroom floor because the sick bowl wasn't big enough!! Nice!!!
Slept from 4-8pm, and then felt better.
Tuesday 24th June 2008
Feeling a bit better this morning although I don't want to eat anything. Went to the playroom and decorated a mug for mum to have her tea in.
Tried Wotsits during school this afternoon but didn't really enjoy them! Learnt about time at school, and also had a music lesson. Dad came and visited and said I was mad - must be all the medicine I have to take - I'm a bit hyper this evening! Someone has stolen all my microwave dinners out of the fridge so I've sent mum out to buy chunky chicken and rice.
Just eaten it and it was lovely-better than hospital food.
Fed up having to take phosphate every 5 minutes - it tastes disgusting! We've tried to mix it with water, squash, milkshake,but it still tastes horrible. We've now put it in coke, and I'm trying to drink it, but its nasty! The nurses say I have to have it 3 times a day because my phosphate levels are too low, and they need to be higher.
The doctors have told me my operation will be on the 9th July, which is only 2 weeks tomorrow - SCARY!! At least my pesky lump will be gone though.My friend Rose downstairs has been told that she might have to have her leg amputated when she has her operation on Monday - she is scared - I would be too!
I am going to play tennis with the physiotherapist in the morning in the gym at the hospital - I'm well excited! I'll write tomorrow and let you know how I did!
Subscribe to:
Posts (Atom)
