- 15:26 Just finished buying beads for a scarf pin I'm making for a friend. Now back to knitting socks while my hands let me. #
- 18:22 Just messed up a whole frow of my sock, decided to leave it for the moment cos otherwise I'll throw it across the room in frustration! #
Wednesday, January 28, 2009
Tweets for Today
Tuesday, January 27, 2009
Tweets for Today
- 11:21 At hospital waiting for chemo to be ready. Knitting a sock and reading "The World without us" by Alan Weisman. #
Saturday, January 24, 2009
Tweets for Today
- 11:32 Getting ready to go and visit Shan and Mike. #
- 14:23 Reading "God is not Great", by Christopher Hitchens. I like this man! #
Thursday, January 22, 2009
Tweets for Today
- 09:19 At hairdresser havingbit coloured, cut and blowdried. Was going to have it done before Xmas but life intervened. #
Tuesday, January 20, 2009
Tweets for Today
- 11:19 Reading lots of books at the moment 2 paper based 1 online and 1 downloaded on my Iphone; I am book-rich. #
Sunday, January 18, 2009
Tweets for Today
- 12:10 Sun is shining and I'm feeling good today. #
Wednesday, January 14, 2009
Tweets for Today
- 20:33 Southend scored, us Essex girls are pleased. Essex boys may have extra good fun tonight. Wink wink! #
Steroids can be good
Hi Everyone,
I've just has a burst of energy (probably a result of the steroids they gave me yesterday when I had chemo).
As a result I've finally got around to emailing all of the lovely people who sent good wishes. All the people that is who I have emails addresses for!
However there are a few I don't and you can't send a private reply to replies on this blog so I'd like to thank anyone who hasn't has a personal reply for your kind thoughts and wishes and for keeping my spirits up when I'm to down to be a good friend and reply. Esp CW who sends loads of positive stuff from Australia.
Hugs to you all
Jill (lucky to have a fab husband and lots of support from family and friends)
I've just has a burst of energy (probably a result of the steroids they gave me yesterday when I had chemo).
As a result I've finally got around to emailing all of the lovely people who sent good wishes. All the people that is who I have emails addresses for!
However there are a few I don't and you can't send a private reply to replies on this blog so I'd like to thank anyone who hasn't has a personal reply for your kind thoughts and wishes and for keeping my spirits up when I'm to down to be a good friend and reply. Esp CW who sends loads of positive stuff from Australia.
Hugs to you all
Jill (lucky to have a fab husband and lots of support from family and friends)
Monday, January 12, 2009
Tweets for Today
- 11:46 Up very late cos I'm lazy, tomorrow will have to be up at 6-6.30 for hospital (keep your fingers crossed that my bloods are okay then)! #
- 12:51 Just had shower and washed hair, so nice to be without the PICC line sticking out of my arm, makes showers a pleasure again! #
- 14:07 Off to the library to pay for a book that I lost (bad Jill!) I'm hoping that we can buy creamcakes while we are out toom #
Sunday, January 11, 2009
Tweets for Today
- 01:39 Can't sleep so playing on the puter #
- 01:56 @marydeeo I'm good just now, hospital again on Tuesday so good part of cycle. Been remiss about twittering for the last few weeks though! #
- 11:59 @marydeeo The soup was mainly for Dad, I sent him 12 cartons of it yesterday via Phil's brother - Dad's got cold so I can't go see him :-( #
Thursday, January 1, 2009
Hi Everyone, Happy New Year!
So sorry that I haven’t been in touch recently but frankly just between you, me and the gatepost December was a truly horrid month and I either didn’t have the time or the energy or the heart to write.
Feeling slightly better now so I thought I’d write a catch-up post (some of you may have read bits and pieces in my infrequent twitter posts so feel free to ignore the following whine but I think writing it may make it easier to put it behind me)
Anyway the month started on 2nd Dec when I went into the MDU for my usual treatment all went well but when I got up on 3rd my left arm (the one with the PICC line in) was slightly swollen and pink. I phoned the hospital and they were concerned but as it’s such a long drive they suggested that I might want to have my local doctor check it out first. By mid-morning when I saw the doc it was much more swollen and turning a delicate shade of purple so she sent me to the Marsden right away.
They did an ultrasound but to be honest by this time it was more to see where the clot had formed than if I had one, it was much further in than they expected just above my heart (apparently that’s not too bad it’s the ones in the lung that are really dangerous) still it was scary!
They pulled the line and then I had to be admitted as the treatment was only half finished. If you don’t have some sort of central access line they have to give you a very diluted form of the drug as in it’s more concentrated form it would burn the inside of the smaller vein.
Being admitted to hospital unexpectedly when it’s too far from anything to be brought in from home is the pits! Poor Phil had to come in fairly early the following morning to bring in all of my medication then the infusion which was due to finish at about 8-8.30 lasted till after 10.30 so we didn’t get home till midnight. To be fair they offered to keep me in for the extra night but then Phil would have had to go home late and then come back AGAIN the following day.
I had agreed with the doctors that having been through 3 PICC lines it would be better to have a central Port put in (the advantage is that you don’t have an open wound like you do with the PICC but you do need to have a general for it to be put in and taken out too)
On the Monday the 8th I got a call from the Fulham branch of the Marsden arranging for me to go in on the Wednesday to have the Port inserted (this would mean it was done in time for my next treatment which was due on the 16th) poor old Phil cancelled his 3rd job in the period and then half an hour later the Sutton branch called to say they had arranged a scan for the Wednesday too.
Now we come to the 2nd thread of horrible December. You may recall that I had a scan in November which showed that everything was stable, I did ask about the fact that my tumour markers were rising but the doc said it wasn’t a problem. Anyway they had risen sharply and now they were very concerned that it was a problem. So the cancelled the Port in favour of the scan partly because if the drugs had stopped being effective I might not need a port for the new drug regime. So now we have two very scary things happening at the same time!
So Wed 10th we are back in the Marsden having a scan, they also made me an appointment for Monday 15th for the clinic to get the results. I’ll leave you to imagine what was going through our minds for the next few days.
So Monday comes and the scan shows no growth in the tumours, everything is still stable (best news we could have had). This however was going to be an exhausting week for us both!
Tuesday we had to drive back to the Marsden (early morning this time) they had booked an appointment for me to have a new PICC inserted to last till the Port could be done. Well after 3 PICCs there was only one place left to try and boy did we try! They use and ultrasound to locate the vein then give you a local and try to access the vein while checking progress on the ultrasound, I think we had 6 tries before the nurse admitted defeat (my veins were not playing at all). Given that the treatment still seems to be working well for me and that I was okay physically they didn’t want to delay my treatment till after Christmas to they admitted me back into hospital for treatment on Friday 19th for 3 days. In the meanwhile on Wed 16th we had to traipse up to Fulham to have my pre-assessment for the Port op which had been rescheduled for 23rd Dec. Oh Joy!
I wouldn’t let Phil come to visit on the Saturday because he was totally exhausted from all the running around during the week, I have to say the food at the Marsden is by far the best hospital food I’ve ever tasted to the point where you actually look forward to meals.
In the meantime at home Phil wasn’t resting like he was supposed to; he spent the whole time cleaning and tidying the house so that I didn’t recognise it when I got home (he says it was displacement activity but I just think he is wonderful. He found my precious 21st ring which had been missing for months (I’m getting ahead of myself here cos he gave me the ring on Christmas day but I was so pleased I cried!).
Phil came early Sunday evening to pick me up but once again the treatment overran and we didn’t leave till after 10.30 again.
We had Monday to rest (well actually with all the running around we didn’t have and food in the house so we went shopping). Then on Tuesday we had to leave the house at 6am to get into London in time for my op (in the end after looking at all the options we forked out for taxies both ways cos there is no parking anywhere close and they didn’t want me travelling home on public transport (especially on 23rd Dec).
After all this we did manage to have a fairly good Christmas and Boxing day although poor Phil had to do all the work once again (sometimes I wonder why he puts up with me but I know it’s cos he loves me)
My next treatment was scheduled for 30 Dec, the new port worked fine (I’ll have to have a District nurse come in to flush and disconnect it as you need to have special training).
Sounds like the end of our difficulties except.... 1am in the morning the pump started to alarm and al the ways I’ve learned to fix it didn’t work, I called the night number and they said it was the pump and I’d need to go in to get it replaced. Joy of joys - yesterday we drove back to the Marsden! Turned out the pump was overdue for a service.
The pump should have only taken a few minutes to replace but while the nurse went to get a new battery she forgot to clamp my line. I shouldn’t have bled so fast but of course Phil has been injecting me with blood thinner every day to help with the clot so by the time I realised I was bleeding back do the line and put the clamp on it had got into the drug bag which was therefore contaminated. This meant that we had to wait for hours while Pharmacy calculated how much drug I’d already had and made me up a new batch.
Boy were we both exhausted by the time we got home.
I’m hoping that it was the last gasp of a horrible December and that with the New Year things will get better for us and for you all.
So sorry that I haven’t been in touch recently but frankly just between you, me and the gatepost December was a truly horrid month and I either didn’t have the time or the energy or the heart to write.
Feeling slightly better now so I thought I’d write a catch-up post (some of you may have read bits and pieces in my infrequent twitter posts so feel free to ignore the following whine but I think writing it may make it easier to put it behind me)
Anyway the month started on 2nd Dec when I went into the MDU for my usual treatment all went well but when I got up on 3rd my left arm (the one with the PICC line in) was slightly swollen and pink. I phoned the hospital and they were concerned but as it’s such a long drive they suggested that I might want to have my local doctor check it out first. By mid-morning when I saw the doc it was much more swollen and turning a delicate shade of purple so she sent me to the Marsden right away.
They did an ultrasound but to be honest by this time it was more to see where the clot had formed than if I had one, it was much further in than they expected just above my heart (apparently that’s not too bad it’s the ones in the lung that are really dangerous) still it was scary!
They pulled the line and then I had to be admitted as the treatment was only half finished. If you don’t have some sort of central access line they have to give you a very diluted form of the drug as in it’s more concentrated form it would burn the inside of the smaller vein.
Being admitted to hospital unexpectedly when it’s too far from anything to be brought in from home is the pits! Poor Phil had to come in fairly early the following morning to bring in all of my medication then the infusion which was due to finish at about 8-8.30 lasted till after 10.30 so we didn’t get home till midnight. To be fair they offered to keep me in for the extra night but then Phil would have had to go home late and then come back AGAIN the following day.
I had agreed with the doctors that having been through 3 PICC lines it would be better to have a central Port put in (the advantage is that you don’t have an open wound like you do with the PICC but you do need to have a general for it to be put in and taken out too)
On the Monday the 8th I got a call from the Fulham branch of the Marsden arranging for me to go in on the Wednesday to have the Port inserted (this would mean it was done in time for my next treatment which was due on the 16th) poor old Phil cancelled his 3rd job in the period and then half an hour later the Sutton branch called to say they had arranged a scan for the Wednesday too.
Now we come to the 2nd thread of horrible December. You may recall that I had a scan in November which showed that everything was stable, I did ask about the fact that my tumour markers were rising but the doc said it wasn’t a problem. Anyway they had risen sharply and now they were very concerned that it was a problem. So the cancelled the Port in favour of the scan partly because if the drugs had stopped being effective I might not need a port for the new drug regime. So now we have two very scary things happening at the same time!
So Wed 10th we are back in the Marsden having a scan, they also made me an appointment for Monday 15th for the clinic to get the results. I’ll leave you to imagine what was going through our minds for the next few days.
So Monday comes and the scan shows no growth in the tumours, everything is still stable (best news we could have had). This however was going to be an exhausting week for us both!
Tuesday we had to drive back to the Marsden (early morning this time) they had booked an appointment for me to have a new PICC inserted to last till the Port could be done. Well after 3 PICCs there was only one place left to try and boy did we try! They use and ultrasound to locate the vein then give you a local and try to access the vein while checking progress on the ultrasound, I think we had 6 tries before the nurse admitted defeat (my veins were not playing at all). Given that the treatment still seems to be working well for me and that I was okay physically they didn’t want to delay my treatment till after Christmas to they admitted me back into hospital for treatment on Friday 19th for 3 days. In the meanwhile on Wed 16th we had to traipse up to Fulham to have my pre-assessment for the Port op which had been rescheduled for 23rd Dec. Oh Joy!
I wouldn’t let Phil come to visit on the Saturday because he was totally exhausted from all the running around during the week, I have to say the food at the Marsden is by far the best hospital food I’ve ever tasted to the point where you actually look forward to meals.
In the meantime at home Phil wasn’t resting like he was supposed to; he spent the whole time cleaning and tidying the house so that I didn’t recognise it when I got home (he says it was displacement activity but I just think he is wonderful. He found my precious 21st ring which had been missing for months (I’m getting ahead of myself here cos he gave me the ring on Christmas day but I was so pleased I cried!).
Phil came early Sunday evening to pick me up but once again the treatment overran and we didn’t leave till after 10.30 again.
We had Monday to rest (well actually with all the running around we didn’t have and food in the house so we went shopping). Then on Tuesday we had to leave the house at 6am to get into London in time for my op (in the end after looking at all the options we forked out for taxies both ways cos there is no parking anywhere close and they didn’t want me travelling home on public transport (especially on 23rd Dec).
After all this we did manage to have a fairly good Christmas and Boxing day although poor Phil had to do all the work once again (sometimes I wonder why he puts up with me
My next treatment was scheduled for 30 Dec, the new port worked fine (I’ll have to have a District nurse come in to flush and disconnect it as you need to have special training).
Sounds like the end of our difficulties except.... 1am in the morning the pump started to alarm and al the ways I’ve learned to fix it didn’t work, I called the night number and they said it was the pump and I’d need to go in to get it replaced. Joy of joys - yesterday we drove back to the Marsden! Turned out the pump was overdue for a service.
The pump should have only taken a few minutes to replace but while the nurse went to get a new battery she forgot to clamp my line. I shouldn’t have bled so fast but of course Phil has been injecting me with blood thinner every day to help with the clot so by the time I realised I was bleeding back do the line and put the clamp on it had got into the drug bag which was therefore contaminated. This meant that we had to wait for hours while Pharmacy calculated how much drug I’d already had and made me up a new batch.
Boy were we both exhausted by the time we got home.
I’m hoping that it was the last gasp of a horrible December and that with the New Year things will get better for us and for you all.
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