Well, what can I say - another eventful week in Sarahs treatment!!! Firstly, we went in to hospital on Monday after a lovely long weekend at home for bank holiday, and although I could get onto the internet on Monday night, by Tuesday, the server had gone down and we couldn't for the rest of the week, hence the delay in updating the blog!! It was like our right arms had been cut off - Sarah couldn't watch BBCiplayer after 9pm when the tellies went off - I couldn't check the dire state of my bank account whilst I was in hospital - only good thing was the Olympics had finished, so I wasn't missing anything!!!
On Tuesday, chemo went up, and all went fine, but then in the afternoon, Sarah started shivering and shaking and she spiked yet another temperature!! I think she's allergic to UCH!!! She recovered by Wednesday, and Georgia came to see her with her nan, and also Uncle Bob - she was in good spirits and was cheerful. However, by Wednesday late afternoon, the temperature had spiked again - the nurses took cultures and she was started on antibiotics straight away - the temperature didn't subside this time and she was more than 38.5 degrees for most of the night. By Friday, she was on 2 lots of antibiotics - one once a day, and one 3 times a day. We therefore had to go straight to our local hospital - West Middlesex - for the antibiotics to be administered.We stayed there over night Friday and Saturday and Sarah was really not very well. She was lethargic and sick, and not happy to be kept in hospital. Today, Sunday, we were allowed out between doses, so I could get my washing done, and Sarah could enjoy some time at home.We have just had Sunday roast, and then after giving Sarah a well needed bath, we are going back in for the night so she can have tonights 10pm dose, then one at 6am!!! Hopefully, as she is feeling a bit better, we can go ahead with the chemo due next week, probably Tuesday, or Wednesday. Lets hope next weeks story is not the same!!!
Sunday 31 August 2008
Thursday 21 August 2008
Wednesday/Thursday 20th/21st August 2008
Another boring day in hospital Wednesday - I hate it, and all that happens is blood tests at 12 o'clock, loads of tablets, and fluid that makes me go to the loo every hour!! My cousin Lucy did come and visit after morning playtime though, and she came down to the gym with me and mum, so I could do some physio. I had to lie on the bed and lift me knee up off the bed by myself using my hamstrings. I was feeling tired and sick so I didn't want to do it, but Claire the physio made me do 70 bends!!! I got better the more I did.
Wednesday night, the nurses took my temperature and under 1 arm it was 38.4, the other arm was 37.1, and under my tongue was 37.2. They waited an hour and did it again, and with one thermometer it was 38.8, and another was 37.2!!! they couldn't understand it! They couldn't decide if I had an infection or not because 38 degrees is the limit before you get antibiotics.They decided to leave it and keep an eye on me, but luckily I didn't need any more medicine.
Thursday was OK, I didn't feel too bad, and I went to play and made a picture frame, and decorated a cocktail glass with glass paint. I did some exercises at lunch time and can now bend my leg up on my own - not very far, but it comes off the bed!! After lunch the some Arsenal footballers came to the hospital, so we went to see them - we saw Arsene Wenger, Fabregas, and Almunia the goalie. I got their autographs too, and I got a signed photo for my uncle Mike who loves Arsenal!! Mum also got Roger Daltry's autograph for me - I don't know who he is but she did - she says he was a famous popstar - lead singer of the Who- never heard of them!!!She was excited though!
Also, we got to come home - my levels were low enough, and the surgeon who did my leg also said I can put weight on my leg now, not wear the brace in bed, and on Tuesday next week, I can get rid of the brace altogether!! Yippee!!
Wednesday night, the nurses took my temperature and under 1 arm it was 38.4, the other arm was 37.1, and under my tongue was 37.2. They waited an hour and did it again, and with one thermometer it was 38.8, and another was 37.2!!! they couldn't understand it! They couldn't decide if I had an infection or not because 38 degrees is the limit before you get antibiotics.They decided to leave it and keep an eye on me, but luckily I didn't need any more medicine.
Thursday was OK, I didn't feel too bad, and I went to play and made a picture frame, and decorated a cocktail glass with glass paint. I did some exercises at lunch time and can now bend my leg up on my own - not very far, but it comes off the bed!! After lunch the some Arsenal footballers came to the hospital, so we went to see them - we saw Arsene Wenger, Fabregas, and Almunia the goalie. I got their autographs too, and I got a signed photo for my uncle Mike who loves Arsenal!! Mum also got Roger Daltry's autograph for me - I don't know who he is but she did - she says he was a famous popstar - lead singer of the Who- never heard of them!!!She was excited though!
Also, we got to come home - my levels were low enough, and the surgeon who did my leg also said I can put weight on my leg now, not wear the brace in bed, and on Tuesday next week, I can get rid of the brace altogether!! Yippee!!
Tuesday 19 August 2008
Tuesday 19th August 2008
What a night!! Sarah was really sick almost as soon as the Methotrexate went up, and it caught us by surprise a bit as she coped really well during her last cycle and felt fine all the way through - maybe her resistance has dropped a bit with the 5 week gap between treatments. She got the shivers, and complained about being freezing cold, although I was really hot! I managed to persuade her to have Nozinan, which is a good antisickness drug which knocks her out usually, and works wonders - she went straight to sleep, but was fitfull, and really not settled. Bethan, Sarahs favourite nurse, took her temperature and blood pressure around midnight, and her heart rate was high and her temperature was 38.4.
38 degrees and neutropenic (when you have no immune system to fight infection) is not good news, so they left it half an hour and took it again and it was still 38 degrees despite me removing 2 blankets, and her dressing gown!! They therefore started her on antibiotics straight away, no messing around! They also took blood samples and cultures to test for bugs growing - a bit scary as we have come this far without experiencing any of these dramas!!
However, although we had some stroppy trips onto the bedpan during the night, because she was tired and wobbly due to the drugs, she wasn't sick any more, and her temperature stablised.The blood they took in the night was also tested, and it turned out that she is no longer neutropenic, so all should be well. They continued the antibiotics today and will do until the blood cultures come back, probably tomorrow, but she's had a good day otherwise! Surprisingly, after all that, she had cheese and onion crisps for breakfast, followed by an orange club, and beans on toast for lunch - she followed that with 2 naan bread for tea, dipped in my chicken tikka sauce (not my idea I can tell you!!!) and an orange. She's been in the playroom twice today and had a nice visit from Auntie Janice and Uncle Mike. She got seen by the physio who gave her a fluffy boot to wear to keep her ankle straight, and she managed to get the bend on the leg machine up to 60 degrees(nasty Auntie Janice cranked it up high while she was playing on her Wii with Uncle Mike and she wasn't thinking about it!!) It didn't last for long once she noticed, but she was proud enough of herself to tell the physio when she came back on the ward later! Tomorrow she is going down to the gym - who knows what she will acheive down there!! Fingers crossed for a decent nights sleep at last.................
38 degrees and neutropenic (when you have no immune system to fight infection) is not good news, so they left it half an hour and took it again and it was still 38 degrees despite me removing 2 blankets, and her dressing gown!! They therefore started her on antibiotics straight away, no messing around! They also took blood samples and cultures to test for bugs growing - a bit scary as we have come this far without experiencing any of these dramas!!
However, although we had some stroppy trips onto the bedpan during the night, because she was tired and wobbly due to the drugs, she wasn't sick any more, and her temperature stablised.The blood they took in the night was also tested, and it turned out that she is no longer neutropenic, so all should be well. They continued the antibiotics today and will do until the blood cultures come back, probably tomorrow, but she's had a good day otherwise! Surprisingly, after all that, she had cheese and onion crisps for breakfast, followed by an orange club, and beans on toast for lunch - she followed that with 2 naan bread for tea, dipped in my chicken tikka sauce (not my idea I can tell you!!!) and an orange. She's been in the playroom twice today and had a nice visit from Auntie Janice and Uncle Mike. She got seen by the physio who gave her a fluffy boot to wear to keep her ankle straight, and she managed to get the bend on the leg machine up to 60 degrees(nasty Auntie Janice cranked it up high while she was playing on her Wii with Uncle Mike and she wasn't thinking about it!!) It didn't last for long once she noticed, but she was proud enough of herself to tell the physio when she came back on the ward later! Tomorrow she is going down to the gym - who knows what she will acheive down there!! Fingers crossed for a decent nights sleep at last.................
Monday 18 August 2008
Monday 18th August 2008
Blood tests at our local hospital were fine for chemo to go ahead today, so we made the journey back to UCH yesterday evening. We requested our own room again because of the difficulty Sarah has going to the loo with her leg in a splint, but were told there were no rooms free and they were full. We therefore had to do the next best thing and chose the bed space with the largest square footage - we've been in all four beds now we are old hands, so we know bed 6 has the most room around the bed!! Last night was a bit traumatic, because not only was Sarah sooooo fed up and upset being back in hospital after a wonderful 17 days at home in her own bed with her daddy and big sister, but we were unfortunately next to a very sick little boy, who was hooked up to some noisy machine, which beeped loudly every half an hour (thats what it seemed like anyway!!) and every time it beeped, nurses came running! Sarah was hooked up to fluids at 6am, and was made to take a tablet, which is so big she has to have it cut into 4 pieces. Psychologically,Sarah always feels ill as soon as she is hooked up, even if its only fluids, so she spent all morning complaining of feeling sick. She still managed breakfast, and lunch of a cheese and ham toastie. Once chemo got hooked up, the sickness kicked in with a vengeance! The poor physio Claire comes to see her and every time she starts exercises, she starts to feel sick - Claire is taking it personally now!! However, Sarah managed to bend a little bit without her brace on which was a first. She was also put on this contraption which bends your leg for you when you are just lying down feeling crap!! She managed to get it up to 40 degrees before she complained. Hopefully when she is feeling a bit better we can get it a bit further.This afternoon she was sick, and this made her fall asleep, so hopefully she will start to feel better now the chemo has stopped.
Friday 15 August 2008
Friday 15th August 2008
Another quiet few days, with not alot going on - Sarah has been well, no sickness, or temperature, and appetite good. Wednesday morning we went to Twickenham for coffee with my friend, then for a pizza at Zizzi with Katie serving us!! we managed to get the whole meal free from the manager which made it taste much better!
Thursday, Sarahs friend Sassie and her mum Tina came round for a chat and some lunch, and we spent an hour or two on the Wii, which was very funny!
Today (friday) the nurse came and took Sarahs blood, and her levels are a bit low, too low in fact to start chemo Monday unless they recover - we are going to West Middlesex Hospital in the morning for another blood test, and hopefully the levels will go up enough for chemo to start as planned - we don't want to delay anything now - November is long enough away, without having to go on longer than that!!
The physio came at last too, and got Sarah bending her leg to 50 degrees - gave her exercises for her ankle, and lots of encouragement.
Thursday, Sarahs friend Sassie and her mum Tina came round for a chat and some lunch, and we spent an hour or two on the Wii, which was very funny!
Today (friday) the nurse came and took Sarahs blood, and her levels are a bit low, too low in fact to start chemo Monday unless they recover - we are going to West Middlesex Hospital in the morning for another blood test, and hopefully the levels will go up enough for chemo to start as planned - we don't want to delay anything now - November is long enough away, without having to go on longer than that!!
The physio came at last too, and got Sarah bending her leg to 50 degrees - gave her exercises for her ankle, and lots of encouragement.
Monday 11 August 2008
Monday 11th July 2008
A quiet weekend, with nothing to report - physio going well, although I think Sarah has a reaction to the lollipops!! She was tearful and depressed, and she had a headache all day Saturday - some of the side effects of the drup in the lollipops! (I always tell Dave not to read the leaflets inside medicines, or you talk yourself into half the symptoms, but in this instance, I did read them, and Sarahs mood seemed to fit.!!) We stopped the lollipops Sunday and she cheered up again, so maybe they were the problem.She was till able to bend her leg with not much pain so we'll mention it to the doctors when we go back into UCH next Sunday.
This morning, we had to trek into London for a clinic appointment with Doctor Maria, to discuss the results of Sarahs histology report, and the clinical trial we signed up for - I knew this would be a challenge and Sarah didn't disappoint! The study involves you being randomly selected between 2 different types of treatment post-surgery - 1) standard chemotherapy of 4 cycles, then stop, which has a high success rate in good responses pre-surgery(which Sarah was) or 2) standard chemotherapy, followed by 18 months of weekly Interferon injections, administered at home. We both knew what Sarah would say, and we were right! She point blank refused the injections, as she is needle phobic! No amount of persuasion would make her budge.Maria said they would help her get over her phobia, she could do the injections herself, and other things too, but nope, she wouldn't agree. We did warn them, and our view is, that as she may not have been chosen to do the injections anyway, we aren't any worse off - she would have had the standard treatment if that is what the computer had chosen for her, and that has worked for hundreds of people before her.They also don't know if the Interferon would make any difference any way, so it is all speculation. We therefore came home not signed up for the trial, and treatment continues next Monday as before.11 weeks in hospital to go, intermingled with 5 weeks at home-November still seems ages away! One nice thing we did hear Doctor Maria say today was that Sarah was in remission - the surgeons report was good and said all the tumour was removed and there was no cancer left in Sarahs body - that's what we were waiting to hear - lovely to hear it officially though - long may it continue!
This afternoon we collected our new car, and Katie insisted we go out for a drive in it - L plates on, and off we went! nerve wracking for me, but exciting for her! I expect she will be dragging me out at every opportunity now, to get loads of practice. She has her theory tomorrow so fingers crossed for that!
This morning, we had to trek into London for a clinic appointment with Doctor Maria, to discuss the results of Sarahs histology report, and the clinical trial we signed up for - I knew this would be a challenge and Sarah didn't disappoint! The study involves you being randomly selected between 2 different types of treatment post-surgery - 1) standard chemotherapy of 4 cycles, then stop, which has a high success rate in good responses pre-surgery(which Sarah was) or 2) standard chemotherapy, followed by 18 months of weekly Interferon injections, administered at home. We both knew what Sarah would say, and we were right! She point blank refused the injections, as she is needle phobic! No amount of persuasion would make her budge.Maria said they would help her get over her phobia, she could do the injections herself, and other things too, but nope, she wouldn't agree. We did warn them, and our view is, that as she may not have been chosen to do the injections anyway, we aren't any worse off - she would have had the standard treatment if that is what the computer had chosen for her, and that has worked for hundreds of people before her.They also don't know if the Interferon would make any difference any way, so it is all speculation. We therefore came home not signed up for the trial, and treatment continues next Monday as before.11 weeks in hospital to go, intermingled with 5 weeks at home-November still seems ages away! One nice thing we did hear Doctor Maria say today was that Sarah was in remission - the surgeons report was good and said all the tumour was removed and there was no cancer left in Sarahs body - that's what we were waiting to hear - lovely to hear it officially though - long may it continue!
This afternoon we collected our new car, and Katie insisted we go out for a drive in it - L plates on, and off we went! nerve wracking for me, but exciting for her! I expect she will be dragging me out at every opportunity now, to get loads of practice. She has her theory tomorrow so fingers crossed for that!
Friday 8 August 2008
Thursday 31st July - Friday 8th August 2008
Nothing has been posted since our release from UCH as it has been a quiet, non-eventful week, but at the request of Rose and Charlotte, we have updated you all on Sarah's progress here!!
We were allowed home Thursday 31st July at 8pm - the chemo seemed to go on for ages - the start was delayed because of the fire in the Rosenheim building the previous week, so the end was delayed too!! Sarah had been given different medicine for her sickness and it seemed to have worked a treat! Although she had felt sick since Wednesday, she wasn't actually sick at all.
She was desperate to go home, so was really pleased to be let out eventually! Friday was OK, still no sickness, and we even managed a trip to Pets at Home to buy more fish for Sarah's fish tank!! In the evening, Sarah went to Pizza Express for her friend Georgia's birthday party, so she had a lovely time catching up with all her friends and showing off her new leg.
At the weekend, we just chilled out at home.
I managed to do 2 and a half days at work this week, so adult conversation was good to have for a change!! Sarah's non-use of her leg is proving a challenge for me and my back! Everywhere she goes, I have to go too, and everywhere I go, she has to go too!! Trips to the loo on her crutches are hilarious, with Sarah yelling at me to lift her leg, then its too high, then its too low etc....... The Fentanol lollipops are working well, which she has to suck while she is doing her physio with me as a pain killer- this involves me lifting her thigh to bend her knee, and her shouting at me for either holding it wrong, or doing it too much!! She can now bend her knee to about 45-50 degrees when she is cooperating. Still waiting for the community physio to make contact so she can do it instead of me, but we are doing OK.
Monday we had a trip to Sarahs swimming club to say hello to all her friends there - it was nice to catch up with everyone there and update them on her progress.
Wednesday brought the one and only sickness episode, but once it was out, Sarah felt good again and continued to eat her pizza for tea!!
The nurse came Thursday to take blood and in between Sarah playing Brain Training on her DS, she even managed a few grunts in acknowledgement of her being there!! Glad some normality has arrived in our household!! Tonight, Katie and Sarah are having a DVD watching marathon with popcorn and coke, so I expect to be woken in the night with crys of 'I don't feel very well' but we will see!! Managed to get my hair cut today, and am having a massage, manicure and pedicure tomorrow morning, as a present from the hockey team I managed last year, so a pampering day is on the cards - I can then sit and watch the olympics all day too!! I've forgotten what it is like to relax!! It appears that since Sarahs operation, she seems to be much healthier - more cheerful, not as sick, and much more up beat about everything - histology came back on the tumour as a good response (more than 95% dead when removed) so I wonder if the fact that there is nothing in her body to make her feel ill any more is having a positive effect(?). Exactly half way through treatment now (worst half is over), so light is visible at the end of this tunnel we are trapped in. Still 3 and a half cycles to go, but doesn't seem to be nearly as daunting as the first 2 and a half! We wait with baited breath to see if she goes neutropenic over the weekend, but not having been in our local hospital before, we are hoping to avoid it again this time!
We were allowed home Thursday 31st July at 8pm - the chemo seemed to go on for ages - the start was delayed because of the fire in the Rosenheim building the previous week, so the end was delayed too!! Sarah had been given different medicine for her sickness and it seemed to have worked a treat! Although she had felt sick since Wednesday, she wasn't actually sick at all.
She was desperate to go home, so was really pleased to be let out eventually! Friday was OK, still no sickness, and we even managed a trip to Pets at Home to buy more fish for Sarah's fish tank!! In the evening, Sarah went to Pizza Express for her friend Georgia's birthday party, so she had a lovely time catching up with all her friends and showing off her new leg.
At the weekend, we just chilled out at home.
I managed to do 2 and a half days at work this week, so adult conversation was good to have for a change!! Sarah's non-use of her leg is proving a challenge for me and my back! Everywhere she goes, I have to go too, and everywhere I go, she has to go too!! Trips to the loo on her crutches are hilarious, with Sarah yelling at me to lift her leg, then its too high, then its too low etc....... The Fentanol lollipops are working well, which she has to suck while she is doing her physio with me as a pain killer- this involves me lifting her thigh to bend her knee, and her shouting at me for either holding it wrong, or doing it too much!! She can now bend her knee to about 45-50 degrees when she is cooperating. Still waiting for the community physio to make contact so she can do it instead of me, but we are doing OK.
Monday we had a trip to Sarahs swimming club to say hello to all her friends there - it was nice to catch up with everyone there and update them on her progress.
Wednesday brought the one and only sickness episode, but once it was out, Sarah felt good again and continued to eat her pizza for tea!!
The nurse came Thursday to take blood and in between Sarah playing Brain Training on her DS, she even managed a few grunts in acknowledgement of her being there!! Glad some normality has arrived in our household!! Tonight, Katie and Sarah are having a DVD watching marathon with popcorn and coke, so I expect to be woken in the night with crys of 'I don't feel very well' but we will see!! Managed to get my hair cut today, and am having a massage, manicure and pedicure tomorrow morning, as a present from the hockey team I managed last year, so a pampering day is on the cards - I can then sit and watch the olympics all day too!! I've forgotten what it is like to relax!! It appears that since Sarahs operation, she seems to be much healthier - more cheerful, not as sick, and much more up beat about everything - histology came back on the tumour as a good response (more than 95% dead when removed) so I wonder if the fact that there is nothing in her body to make her feel ill any more is having a positive effect(?). Exactly half way through treatment now (worst half is over), so light is visible at the end of this tunnel we are trapped in. Still 3 and a half cycles to go, but doesn't seem to be nearly as daunting as the first 2 and a half! We wait with baited breath to see if she goes neutropenic over the weekend, but not having been in our local hospital before, we are hoping to avoid it again this time!
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