This last week i was not as energetic as I'd hoped and spent quite a few afternoons asleep.
Monday, my friend came down from oxford to see me and we went out for lunch after she'd done the day's washing up and a neighbour had hoovered around. Unfortunately, it must have caught something as a big plume of smoke came out the bottom so she had to get her own hoover to finish off!! We didn't call out the fire brigade like our neighbour did - we're much more sensible!!!
To suddenly change track, i'm eating a mushroom risotto from the co-op and I've just found 2 peas. Peas are not part of the listed ingredients so now in a quandary whether to eat the rest!! Think I'll have to eat a bit as i'm so hungry. Had 8mg of steroids today so flying high and VERY HUNGRY!!!!
Tuesday was hospice day and i saw the hairdresser and a really wonderful job she did of cutting and straightening my hair which means i can save my vouchers towards some more colour. Well - I want to make the most of it before it falls out again if I'm well enough to go onto another chemo after this one.
I also saw the hospital chaplin to discuss my funeral service except I think I want a double slot booked at the crem so that we can have a less hurried service. It is my special day and i don't want it too feel like a supermarket checkout. We were discussing poems, scripture readings and hymns. Hymns are difficult as the children know different ones to adults. If anybody has ideas for poems, readings, hymns and songs on knows any websites perhaps you could point mein the right direction.
Wednesday was not a good day. I went or radiotherapy for my spine and had to wait on hard chairs for an hour to be seen and then spent the rest of the day feeling as if my spine had been stabbed with a hot red knife so resorted to morphine - my little friend.
I did spend the evening in bed watching Sheffield United play Middlesburgh - Woody fell asleep just before the own goal - how typical!!
Today, I went for chemo etc. I was expecting a very long day but it got off to a good start and saw the consultant on time. he thinks my brain scan will show nothing - well hopefully it will show I do still possess a brain but hopefully an intact one and a skull with no holes in.
The consultant was the one who said i would live for 3 months in Sept 06 so it's difficult to know how the next bit of news is really bad or just a little bad. I'm suffering a lot from swollen ankles which do not always go down overnight. This could be due to further spread in my lymph system and so the drainage is not so good or could be due to the pressure of the tumour on my heart or I could be in mild heart failure. If it is the latter, then I would have to stop the herceptin and hope like other women that my heart would recover sufficiently for me to have further chemo and that the cancer does not go out of control because of stopping herceptin. If my heart does not pick up function then I could not have further chemo after this one which finishes at the end of April so I think I could only live for another couple of months max after that. Really hoping that I can go onto the recycled chemo even if it does mean I go bald again so come on heart please don't let me down now!!
He also thinks I should go 4 weekly to give more time for my blood cells to recover and has also reduced the strength of the dose.
As I was saying a long time back, I saw the doctor on time and spoke to the research nurse and I pointed out it looked as if the herceptin had been crossed off. She went to check at pharmacy and they said they had it prescribed twice so I would get it. So I went into the chemo suite about noon so thought should be finished by 3pm so my friend who had taken me swapped places with another friend. i had the 2 chemos and the bone strengthener and then I could hear the nurses discussing me and where was my herceptin. Expect you can guess - pharmacy had not made the drug up. 45 mins later, pharmacy managed to put a vial or 2 into a bag of saline - about a 5 minute job - and I got my chemo. This then meant that my friend was late picking up her children who had were then late for their swimming lessons.
I have lost the letter from PALS last year so have asked for a new copy as nothing promised has changed and I am going to cchase this up. My poor bum and back and ankles can not stand sitting on those chairs!! Pharmacy are not communicating and decidiing for themselves which drugs I should have - they have not given me the anti-sickness pills but tried to give me more calcium tablets which I refused as I still have about 100!!
Goodish news on the PALS complaint I made to podiatry and their unsuitable chairs. They got back and said the podiatrists agree the chairs are unsuitable and they will get new chairs. I will see if that happens as a friend's husband goes there so I can get him to keep me informed!!
Think we get the news on secondary schools on monday but it maybe later. Cross fingers for the twins.
Monday, my friend came down from oxford to see me and we went out for lunch after she'd done the day's washing up and a neighbour had hoovered around. Unfortunately, it must have caught something as a big plume of smoke came out the bottom so she had to get her own hoover to finish off!! We didn't call out the fire brigade like our neighbour did - we're much more sensible!!!
To suddenly change track, i'm eating a mushroom risotto from the co-op and I've just found 2 peas. Peas are not part of the listed ingredients so now in a quandary whether to eat the rest!! Think I'll have to eat a bit as i'm so hungry. Had 8mg of steroids today so flying high and VERY HUNGRY!!!!
Tuesday was hospice day and i saw the hairdresser and a really wonderful job she did of cutting and straightening my hair which means i can save my vouchers towards some more colour. Well - I want to make the most of it before it falls out again if I'm well enough to go onto another chemo after this one.
I also saw the hospital chaplin to discuss my funeral service except I think I want a double slot booked at the crem so that we can have a less hurried service. It is my special day and i don't want it too feel like a supermarket checkout. We were discussing poems, scripture readings and hymns. Hymns are difficult as the children know different ones to adults. If anybody has ideas for poems, readings, hymns and songs on knows any websites perhaps you could point mein the right direction.
Wednesday was not a good day. I went or radiotherapy for my spine and had to wait on hard chairs for an hour to be seen and then spent the rest of the day feeling as if my spine had been stabbed with a hot red knife so resorted to morphine - my little friend.
I did spend the evening in bed watching Sheffield United play Middlesburgh - Woody fell asleep just before the own goal - how typical!!
Today, I went for chemo etc. I was expecting a very long day but it got off to a good start and saw the consultant on time. he thinks my brain scan will show nothing - well hopefully it will show I do still possess a brain but hopefully an intact one and a skull with no holes in.
The consultant was the one who said i would live for 3 months in Sept 06 so it's difficult to know how the next bit of news is really bad or just a little bad. I'm suffering a lot from swollen ankles which do not always go down overnight. This could be due to further spread in my lymph system and so the drainage is not so good or could be due to the pressure of the tumour on my heart or I could be in mild heart failure. If it is the latter, then I would have to stop the herceptin and hope like other women that my heart would recover sufficiently for me to have further chemo and that the cancer does not go out of control because of stopping herceptin. If my heart does not pick up function then I could not have further chemo after this one which finishes at the end of April so I think I could only live for another couple of months max after that. Really hoping that I can go onto the recycled chemo even if it does mean I go bald again so come on heart please don't let me down now!!
He also thinks I should go 4 weekly to give more time for my blood cells to recover and has also reduced the strength of the dose.
As I was saying a long time back, I saw the doctor on time and spoke to the research nurse and I pointed out it looked as if the herceptin had been crossed off. She went to check at pharmacy and they said they had it prescribed twice so I would get it. So I went into the chemo suite about noon so thought should be finished by 3pm so my friend who had taken me swapped places with another friend. i had the 2 chemos and the bone strengthener and then I could hear the nurses discussing me and where was my herceptin. Expect you can guess - pharmacy had not made the drug up. 45 mins later, pharmacy managed to put a vial or 2 into a bag of saline - about a 5 minute job - and I got my chemo. This then meant that my friend was late picking up her children who had were then late for their swimming lessons.
I have lost the letter from PALS last year so have asked for a new copy as nothing promised has changed and I am going to cchase this up. My poor bum and back and ankles can not stand sitting on those chairs!! Pharmacy are not communicating and decidiing for themselves which drugs I should have - they have not given me the anti-sickness pills but tried to give me more calcium tablets which I refused as I still have about 100!!
Goodish news on the PALS complaint I made to podiatry and their unsuitable chairs. They got back and said the podiatrists agree the chairs are unsuitable and they will get new chairs. I will see if that happens as a friend's husband goes there so I can get him to keep me informed!!
Think we get the news on secondary schools on monday but it maybe later. Cross fingers for the twins.
posted by dippykate @ 9:05 PM
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