We arrived 10 minutes early for the Doppler scan. It was only us in the waiting room, so we were soon seen. The young man carrying out the scan asked me if I was wearing a bra under my top and handed me a towel telling me I could wrap it round me and sit on the side of the couch. Now, I'm not sure what this says about me, but I thought he meant take it all off and wrap the towel round (Chris thought so too!). Apparently not. When he came back in the room, he said I could have kept the bra on. Well, as I was wearing Frances, it was probably better off than on! Anyway, after lifting my chin, holding my breath and lifting my arm for what seemed like ages, the Doppler was over. He was surprised I was having the scan with the PICC line still in, but I explained that they didn't want to take it out before checking if there was a clot. This, it seemed, made it difficult to give a definitive answer to the clot question, but he was 80% sure there was one there. He rang the registrar and gave him the news and we traipsed back to the chemo suite to await a decision.
The girls there have been brilliant, especially Karen and Fiona. Gareth, the registrar, was convinced it would be ok to carry on with the chemo, but to flush it first to see how well that went in. Karen (senior sister) duly did the flush and rang Gareth back to tell him it went through ok. She still wasn't convinced though about giving the chemo, as she didn't want it to reach the clot and then come back down the line and cause problems (as it had with another patient).
Gareth came to look at my arm and have a chat. He explained the results of the scan, telling us that all looked fine below and above the clot. He'd had a chat with my consultant, Dr Newman, and recommended daily Clexane injections until my PICC's removed (sometime in January). This will slowly break up the clot and make sure that no more appear. I had this injection every night in both my hospital stays as I wasn't moving around a lot - bit stingy, but ok. The issue of not getting blood from the line will still exist, of course, but with agreement from Karen, I can go to the chemo suite to have pre-chemo bloods taken, as they seem to be the only ones that can get blood out of my hand without too much fuss. I just hope I don't have to have any other bloods taken by anyone else ie A&E! Will have to be extra careful. As a result of all this, I didn't have to go down to see the radiographer after all. As I'd had to have breakfast before 7 this morning, Chris went to get me a nut bar to nibble on before my treatment.
Karen seemed more satisfied after this explanation, but still wanted to double check by putting a bag of saline in first. This went in really well and to double, double check, she tried to draw blood from the line again. No blood (naturally!), but also no saline, which meant that it had gone through ok. Once I'd been weighed (yes I've put on!), I was plugged into the Docetaxel. The gauze had already been taken off my statlock, to give the sores a chance to dry out, but also to see if there would be any reaction to the Docetaxel. Karen explained some things to look out for - more hair loss (am hoping for the arm hairs this time and more off the legs - shaved this morning and 1 leg was hairier than the other!), possible finger and toe nail loss, facial redness, neuropathy of the hands and feet, aches and pains, to name but a few. The nausea we'll have to see about, but yes possibly that too. Another thing is that the neutrophils will start going down earlier - by day 3 - 4. With the Neulasta and the Clexane, I'll be as proficient as Dad at self injecting!
The Docetaxel went in well, no reactions. I had a cat nap, while Chris wandered off to buy Private Eye and sneak a packet of beef Hoola Hoops. He smelled lovely when he came back and promised to buy me some when we finished. I'd have loved anything to eat!
Finally got home and Chris crashed on the sofa. I too was knacked, but have stayed awake in the hope I'll sleep ok tonight! I'm currently feeling not too bad, tired and a bit achey, but not as yucky as after the FEC. I put this down to not having the ice lollies and water!
Chris took Adam to Futsal where they lost 16 -1! Livi drove her and Sam to Salisbury, both arrived back safely and Vaughan has had a huge amount of homework before his mocks (although I'm not sure the computer has been used solely for that!). Ooh, and "Rita" arrived. In fact I'm wearing her at the moment. Don't worry Auntie Ritas, she's not as bad as Frances and Nora! Not convinced she's the one yet, but I'll keep persevering!
As my lovely Mummy has just arrived, complete with goodie bags of food, I'd better go and say hello!
I'm not sure how I'm going to be after this treatment, but I'll let you know when I can......
Friday, 29 October 2010
Thursday, 28 October 2010
PICC up your troubles.....and smile!
We trotted off to the chemo suite yesterday (Wednesday), in the hope that they would be able to get blood out of this particular stone. Bea injected the Urokinase and Chris and I trooped off to the Friends coffee shop for a butty and a drink. Went commando again (at this rate I'll be going as Mrs 1TT soon too - mmmm, maybe not!).
At 15:00 we went back to the chemo suite. Karen, the sister, took over. The line was flushed I don't know how many times and I don't know how many syringes were used to try and get blood. Karen tried her hardest to draw it out but it didn't want to come. Until, suddenly, slowly, it appeared - well sort of. We were all congratulating her on her efforts, when it stopped. It was coming out soooooo slowly, it was clotting in the vial as soon as it reached it. No good for samples. A lady in the next chair told me that she'd moaned at the 3 attempts made to get blood from her arm, that I made her feel very humble and I was very brave. It was kind of her, but bravery doesn't come into it - I'm very passive and just let them get on with it.
Then the dressing was taken off to look at the arm. There was a swelling near the site and my hand was a bit swollen, so the Registrar came to have a look. It was finally decided that I should have a Doppler scan to see if there were any clots in the arm. The form was duly faxed off and we waited to see what time my appointment would be.
In the meantime, my hand was put in a bowl of warm water to fatten the veins up a bit before the nurse attempted to go in on the outside back of my wrist. Butterfly needle, only slight sting and she got in first time! 3 vials were slowly filled, so not an entirely wasted visit.
There were also calls to the radiologist who put the line in originally. She reluctantly agreed to have a look and maybe put some dye in to see if there was any blockage. She suggested Karen try and pull the line out slightly and then try again, in case it was sitting against the vein wall. This meant taking the statlock dressing off! Ouch!! A new statlock was put back on, but, as the line had been moved slightly it managed to miss the sore bits. Just as well as they're looking really raw. Guess what? No luck, no blood.
Unfortunately the Radiologist couldn't see me until the next day and as we hadn't heard from vascular studies, it was decided to let us go home and to come back the next day at 11:00. This was about 16:45 and we'd arrived at 14:00. There's a lot of hanging around in hospitals!
So, today (Thursday), we arrived at 11:00. Fiona (assistant practitioner) was dealing with it today in Karen's absence. She rang vascular studies to be told the only appointment they could give me was tomorrow at 10:00. This had a knock on effect on the PICC line tests. The Registrar didn't want to have the line disturbed without finding out if the arm had a clot or not. She also rang vascular studies, but was told it was only a trainee on today - she had a long list and wasn't very confident. Various phone calls were made to the radiologist again, who was undertaking a tricky procedure and would get back to Fiona. So we waited and we waited and we waited. Reminder calls were made, but nothing. In the end, around 12:30, Fiona said to go home - it didn't seem likely that they would agree to seeing me without the Doppler scan being done first anyway. That was that. Sod it! Home, pick up boys and then out for lunch!!
We have to go back tomorrow for a scan at 10:00 and then back to the chemo suite. Then, depending on the results of the scan, we'll go to see the radiologist and have some dye injected into the line before they decide if I can have chemo tomorrow as scheduled. If not, then it may have to be delayed until next week (hopefully Monday). It seems this next round of chemo (Docetaxel) takes a little longer for the first treatment - we have to wait an hour after. If, tomorrow, the line is completely knacked then I may have to have it taken out and a Hickman line put in, but that has to be inserted in theatre and I have to wait for a slot. If this happens my chemo will be late, which means that Christmas may not be quite as lovely a time as I was hoping for.
Got it????? No, I'm not sure I have either. It seems that the Registrar and the Radiologist aren't that bothered, but the chemo sister is. Karen would rather have a better idea of what's going on, rather than putting chemo in a line that might not be performing well. It seems the only problem is not getting blood out of it. Anything that's injected into it seems to go in ok, so I can see why they're thinking of leaving it alone. On the other hand, the blood was very thick and gloopy yesterday, so what's going on there? There's also the faff of not getting any decent veins for bloods - that seems a bit hit and miss and I usually end up looking like a pin cushion (a cushion that's lost its cush as Vaughan says!). AND, there's still 3 more treatments to go!! Feel a bit dejected really and also not sure what's going to happen tomorrow. Never thought I'd hear myself say it, but I WANT chemo tomorrow. I don't want to put it off.
Poor Mum's on standby. Although, she may come up tomorrow evening anyway - chemo or not. She's made lasagnes, cottage pies etc and they can't go to waste now, can they?!
On a lighter note - I've ordered another bra! This one's called Rita!!!! Sorry Auntie Ritas (no, not poor grammar - there are 2 of them), it's not sexy and sophisticated, but it looks better than the 1950's effort in M&S. Having said that, if the 1950's one made me look like Christina Hendricks (Joan) in Mad Men, then it may be worth a try! No..........I think you're right...........I've got no chance, I'd better stick with Frances, Nora and hopefully Rita!
At 15:00 we went back to the chemo suite. Karen, the sister, took over. The line was flushed I don't know how many times and I don't know how many syringes were used to try and get blood. Karen tried her hardest to draw it out but it didn't want to come. Until, suddenly, slowly, it appeared - well sort of. We were all congratulating her on her efforts, when it stopped. It was coming out soooooo slowly, it was clotting in the vial as soon as it reached it. No good for samples. A lady in the next chair told me that she'd moaned at the 3 attempts made to get blood from her arm, that I made her feel very humble and I was very brave. It was kind of her, but bravery doesn't come into it - I'm very passive and just let them get on with it.
Then the dressing was taken off to look at the arm. There was a swelling near the site and my hand was a bit swollen, so the Registrar came to have a look. It was finally decided that I should have a Doppler scan to see if there were any clots in the arm. The form was duly faxed off and we waited to see what time my appointment would be.
In the meantime, my hand was put in a bowl of warm water to fatten the veins up a bit before the nurse attempted to go in on the outside back of my wrist. Butterfly needle, only slight sting and she got in first time! 3 vials were slowly filled, so not an entirely wasted visit.
There were also calls to the radiologist who put the line in originally. She reluctantly agreed to have a look and maybe put some dye in to see if there was any blockage. She suggested Karen try and pull the line out slightly and then try again, in case it was sitting against the vein wall. This meant taking the statlock dressing off! Ouch!! A new statlock was put back on, but, as the line had been moved slightly it managed to miss the sore bits. Just as well as they're looking really raw. Guess what? No luck, no blood.
Unfortunately the Radiologist couldn't see me until the next day and as we hadn't heard from vascular studies, it was decided to let us go home and to come back the next day at 11:00. This was about 16:45 and we'd arrived at 14:00. There's a lot of hanging around in hospitals!
So, today (Thursday), we arrived at 11:00. Fiona (assistant practitioner) was dealing with it today in Karen's absence. She rang vascular studies to be told the only appointment they could give me was tomorrow at 10:00. This had a knock on effect on the PICC line tests. The Registrar didn't want to have the line disturbed without finding out if the arm had a clot or not. She also rang vascular studies, but was told it was only a trainee on today - she had a long list and wasn't very confident. Various phone calls were made to the radiologist again, who was undertaking a tricky procedure and would get back to Fiona. So we waited and we waited and we waited. Reminder calls were made, but nothing. In the end, around 12:30, Fiona said to go home - it didn't seem likely that they would agree to seeing me without the Doppler scan being done first anyway. That was that. Sod it! Home, pick up boys and then out for lunch!!
We have to go back tomorrow for a scan at 10:00 and then back to the chemo suite. Then, depending on the results of the scan, we'll go to see the radiologist and have some dye injected into the line before they decide if I can have chemo tomorrow as scheduled. If not, then it may have to be delayed until next week (hopefully Monday). It seems this next round of chemo (Docetaxel) takes a little longer for the first treatment - we have to wait an hour after. If, tomorrow, the line is completely knacked then I may have to have it taken out and a Hickman line put in, but that has to be inserted in theatre and I have to wait for a slot. If this happens my chemo will be late, which means that Christmas may not be quite as lovely a time as I was hoping for.
Got it????? No, I'm not sure I have either. It seems that the Registrar and the Radiologist aren't that bothered, but the chemo sister is. Karen would rather have a better idea of what's going on, rather than putting chemo in a line that might not be performing well. It seems the only problem is not getting blood out of it. Anything that's injected into it seems to go in ok, so I can see why they're thinking of leaving it alone. On the other hand, the blood was very thick and gloopy yesterday, so what's going on there? There's also the faff of not getting any decent veins for bloods - that seems a bit hit and miss and I usually end up looking like a pin cushion (a cushion that's lost its cush as Vaughan says!). AND, there's still 3 more treatments to go!! Feel a bit dejected really and also not sure what's going to happen tomorrow. Never thought I'd hear myself say it, but I WANT chemo tomorrow. I don't want to put it off.
Poor Mum's on standby. Although, she may come up tomorrow evening anyway - chemo or not. She's made lasagnes, cottage pies etc and they can't go to waste now, can they?!
On a lighter note - I've ordered another bra! This one's called Rita!!!! Sorry Auntie Ritas (no, not poor grammar - there are 2 of them), it's not sexy and sophisticated, but it looks better than the 1950's effort in M&S. Having said that, if the 1950's one made me look like Christina Hendricks (Joan) in Mad Men, then it may be worth a try! No..........I think you're right...........I've got no chance, I'd better stick with Frances, Nora and hopefully Rita!
Sunday, 24 October 2010
I've been doing a lot more at this stage than I have previously, which is good and makes me feel like I have a decent spell of "wellness" before the next round of chemo.
Wednesday, I went for lunch with Gaynor and Catherine. We talked about work and it was brilliant. So many things have been put on hold since this crappy cancer came and knocked me out, but lots to look forward to when I get back.
That evening Chris and I went along to school to watch Adam perform his monologue in a GCSE Drama production. It was busy, loud and should probably have been staged in a bigger room, but Adam did well and I'm glad I went.
Thursday saw my baby girl pass her driving test. She was so nervous in the 24 hours beforehand that I did wonder if they would get the better of her. Within minutes of her passing though, I had her screaming down the phone at me "I PASSED!" So pleased for her (not so sure about other road users, but hey!). She really needed something positive to happen to her. She not very optimistic about her life at the moment. This of course meant that as soon as she got home she jumped into the Micra and was off for the rest of the day (hi Liv, bye Liv!). It also meant that as she wasn't home in time for me to have the car, she had to pick the boys up from school. I wasn't too comfortable with this, but they told me (yes, I did grill them when they got home!) that she drove quite well.
Whilst Liv was getting her own grilling from the driving examiner, I had a visit from H and Jessica. My god she's putting on weight - it's all those chocs, H!! No, only joking, I mean Jess (H doesn't look like she's even had a baby!). We had a good natter, only punctuated by me ringing the insurance company to advise them Liv had passed and them advising me that there's a £600 excess for her in the event of an accident!! Not sure the cars even worth that much!
Friday saw the arrival of DadD and Heather. They arrived just after the District Nurse, so they and the boys relegated themselves to the kitchen while Kay flushed my line, changed the statlock and tried to get blood out of a stone! No change on the blood front - well not from the vein anyway. There was blood, however, when she took the statlock off. It seems my skin is now reacting to the adhesive on that now too. If you remember, the statlock is there to keep the PICC line in place. The line is attached to a couple of pins on the statlock, which is then stuck on the arm for stability. So, red, sore and bleeding, the new statlock was stuck back on..........in the same place. It has to be really, because the line daren't be moved. Needless to say, I'm not looking forward to it being changed next Friday! I'm really not sure what else can be used but at this rate I'll need a bloody skin graft when it's been taken off!! I will ask next Wednesday at the Chemo Suite, though. I can't be the only one who has skin reactions to these things, surely?
It felt very much like a Saturday, which was why we forgot Adam was due to have a lift at 17:30 to Futsal in Swindon! Neither he nor Chris had eaten anything when at 17:30 Adam cried "FUTSAL!". This meant Chris had to take him. Luckily he wasn't hungry and Adam had baps in the car on the way there. Happily, the team won 12 - 8 and Chris had an Indian meal waiting for him on his return!
Saturday and Chris had a lie in for a change. Liv was working 06:30 - 14:30 but drove herself there and back - woohoo, result! We had a lazy morning and after she got home, we all trooped into Bath. A tiny bit of window shopping (post surgery bras at M&S that look like something out of the '50s - absolutely no way!) and then a Chinese meal at the Ocean Pearl, which everyone enjoyed. I was able to enjoy this one more than last time (Vaughan's birthday), as I was feeling much better than I did then.
DadD and Heather came round for a last coffee with us this morning before heading back to Lincolnshire.
I have a couple of additions too on the hat front. DadD and Heather bought a hat, scarf and gloves set (pic to follow - when I have make up on!) and also a sleep hat for me. Night times are getting colder and so too is my head! The first night I wore it, I turned over and it ended up over my eyes! Not a bad thing as it happens, as it will act as a shade if I need to go to bed during the day.
Finally, the promised picture of me in the suburban turban hat (I've ordered another colour, as I love it so much) and one of the lippy's I bought!
Wednesday, I went for lunch with Gaynor and Catherine. We talked about work and it was brilliant. So many things have been put on hold since this crappy cancer came and knocked me out, but lots to look forward to when I get back.
That evening Chris and I went along to school to watch Adam perform his monologue in a GCSE Drama production. It was busy, loud and should probably have been staged in a bigger room, but Adam did well and I'm glad I went.
Thursday saw my baby girl pass her driving test. She was so nervous in the 24 hours beforehand that I did wonder if they would get the better of her. Within minutes of her passing though, I had her screaming down the phone at me "I PASSED!" So pleased for her (not so sure about other road users, but hey!). She really needed something positive to happen to her. She not very optimistic about her life at the moment. This of course meant that as soon as she got home she jumped into the Micra and was off for the rest of the day (hi Liv, bye Liv!). It also meant that as she wasn't home in time for me to have the car, she had to pick the boys up from school. I wasn't too comfortable with this, but they told me (yes, I did grill them when they got home!) that she drove quite well.
Whilst Liv was getting her own grilling from the driving examiner, I had a visit from H and Jessica. My god she's putting on weight - it's all those chocs, H!! No, only joking, I mean Jess (H doesn't look like she's even had a baby!). We had a good natter, only punctuated by me ringing the insurance company to advise them Liv had passed and them advising me that there's a £600 excess for her in the event of an accident!! Not sure the cars even worth that much!
Friday saw the arrival of DadD and Heather. They arrived just after the District Nurse, so they and the boys relegated themselves to the kitchen while Kay flushed my line, changed the statlock and tried to get blood out of a stone! No change on the blood front - well not from the vein anyway. There was blood, however, when she took the statlock off. It seems my skin is now reacting to the adhesive on that now too. If you remember, the statlock is there to keep the PICC line in place. The line is attached to a couple of pins on the statlock, which is then stuck on the arm for stability. So, red, sore and bleeding, the new statlock was stuck back on..........in the same place. It has to be really, because the line daren't be moved. Needless to say, I'm not looking forward to it being changed next Friday! I'm really not sure what else can be used but at this rate I'll need a bloody skin graft when it's been taken off!! I will ask next Wednesday at the Chemo Suite, though. I can't be the only one who has skin reactions to these things, surely?
It felt very much like a Saturday, which was why we forgot Adam was due to have a lift at 17:30 to Futsal in Swindon! Neither he nor Chris had eaten anything when at 17:30 Adam cried "FUTSAL!". This meant Chris had to take him. Luckily he wasn't hungry and Adam had baps in the car on the way there. Happily, the team won 12 - 8 and Chris had an Indian meal waiting for him on his return!
Saturday and Chris had a lie in for a change. Liv was working 06:30 - 14:30 but drove herself there and back - woohoo, result! We had a lazy morning and after she got home, we all trooped into Bath. A tiny bit of window shopping (post surgery bras at M&S that look like something out of the '50s - absolutely no way!) and then a Chinese meal at the Ocean Pearl, which everyone enjoyed. I was able to enjoy this one more than last time (Vaughan's birthday), as I was feeling much better than I did then.
DadD and Heather came round for a last coffee with us this morning before heading back to Lincolnshire.
I have a couple of additions too on the hat front. DadD and Heather bought a hat, scarf and gloves set (pic to follow - when I have make up on!) and also a sleep hat for me. Night times are getting colder and so too is my head! The first night I wore it, I turned over and it ended up over my eyes! Not a bad thing as it happens, as it will act as a shade if I need to go to bed during the day.
Finally, the promised picture of me in the suburban turban hat (I've ordered another colour, as I love it so much) and one of the lippy's I bought!
Tuesday, 19 October 2010
Finally got the HD box set up. Am impressed so far, but it's surprising how quickly you get used to it and HD becomes "the norm" when you're watching it. I'm becoming an HD bore - "look, look, LOOK - can't you see the difference", "Oh look at that, that's fantastic!", "No, look and see if it's on HD first!", "See if there's any nature programs on!" - you know the sort of thing (well, maybe you don't, maybe it's just me!). There is definitely a difference though and I like it.
Vaughan came back from the fair unscathed and went back on Saturday night too! Adam's team won their match 9-8 (higher scores than football). Liv went out on a leaving do on Saturday and didn't get in until 04:30 - tired, feet hurting (due to the pink stilettos!), relatively sober and ready for work at 9!
On Sunday, Vaughan was playing in a rugby match at home. Chris took him an hour before for the pre match warm up and Mum and I went along for the match. The weather was beautiful! I revelled in the warm sun on my face and the fresh air. It was brilliant - and the bonus was they won 34 - 14!
The antibiotics seem to be doing their job. The redness is subsiding and Mum devised a more comfortable dressing - just gauze and a small amount of micropore tape, then covered with tubigrip to keep it all secure. It's working well so far. The District Nurse came to flush the line today and changed the gauze etc. Seems my skin is reacting to the micropore tape as well now, so we'll just have to keep moving it!
While she was here, the District Nurse tried to draw blood from the line and guess what? It wouldn't come!! So that was another call to the Chemo Suite and my nurse Bea. She wants to blast it with "drain cleaner" again (found out it's called Urokinase - gets rid of clots). After consulting with someone else, it was decided to wait until my pre-chemo blood test was needed, next Wednesday. So, although I don't have a clinic appointment, I now have to go in. Bea's going to try the Urokinase and leave it for an hour before trying to get blood. If that's successful, then all well and good, but if not, she'll put some more in and leave it 24 hours. Then I'll have to go back on Thursday for them to try again. What happens if that's unsuccessful, I don't know, but the last time she injected it, it worked after an hour. Maybe I'll need that each time I have pre-chemo bloods.
As you've probably seen from Chris blog the photo uploads are working, so here's the one I promised earlier of my white head !
I haven't taken one of me in my new Suburban Turban hat yet, but will make the effort soon - complete with lippy!
Mum went home on Sunday - back next week for chemo #4. DadD and Heather are due this weekend and the kids are all on school/college holidays next week.
Today, I made the mistake of going onto the Breast Cancer Care forums again. Naturally one of the first I read was about a young Mum's death. She was diagnosed in March with secondary breast cancer (no primary diagnosis, just BANG straight into secondaries) and died this month. She started a blog (ramblingsofabadfairy - looks like we're all at it) - much better than mine. The tears came and didn't stop for a while (they were overdue anyway), but then the laughter came. Mrs Bad Fairy was following another blog - http://alrighttit.blogspot.com/ This is what made me giggle and continues to do so. Lisa Lynch, who wrote it, was diagnosed in 2008 and still continues to add to it. She's also written a book on the back of this blog called The C-Word. Read it if you get the opportunity, but be warned there's a lot of bad language. Lisa says the things we all want to say, but can't for fear of offending family and friends. I'm working my way through it and think it's brilliant. You're all very kind about my blog but it's not a patch on hers! Love it!
Vaughan came back from the fair unscathed and went back on Saturday night too! Adam's team won their match 9-8 (higher scores than football). Liv went out on a leaving do on Saturday and didn't get in until 04:30 - tired, feet hurting (due to the pink stilettos!), relatively sober and ready for work at 9!
On Sunday, Vaughan was playing in a rugby match at home. Chris took him an hour before for the pre match warm up and Mum and I went along for the match. The weather was beautiful! I revelled in the warm sun on my face and the fresh air. It was brilliant - and the bonus was they won 34 - 14!
The antibiotics seem to be doing their job. The redness is subsiding and Mum devised a more comfortable dressing - just gauze and a small amount of micropore tape, then covered with tubigrip to keep it all secure. It's working well so far. The District Nurse came to flush the line today and changed the gauze etc. Seems my skin is reacting to the micropore tape as well now, so we'll just have to keep moving it!
While she was here, the District Nurse tried to draw blood from the line and guess what? It wouldn't come!! So that was another call to the Chemo Suite and my nurse Bea. She wants to blast it with "drain cleaner" again (found out it's called Urokinase - gets rid of clots). After consulting with someone else, it was decided to wait until my pre-chemo blood test was needed, next Wednesday. So, although I don't have a clinic appointment, I now have to go in. Bea's going to try the Urokinase and leave it for an hour before trying to get blood. If that's successful, then all well and good, but if not, she'll put some more in and leave it 24 hours. Then I'll have to go back on Thursday for them to try again. What happens if that's unsuccessful, I don't know, but the last time she injected it, it worked after an hour. Maybe I'll need that each time I have pre-chemo bloods.
As you've probably seen from Chris blog the photo uploads are working, so here's the one I promised earlier of my white head !
Mum went home on Sunday - back next week for chemo #4. DadD and Heather are due this weekend and the kids are all on school/college holidays next week.
Today, I made the mistake of going onto the Breast Cancer Care forums again. Naturally one of the first I read was about a young Mum's death. She was diagnosed in March with secondary breast cancer (no primary diagnosis, just BANG straight into secondaries) and died this month. She started a blog (ramblingsofabadfairy - looks like we're all at it) - much better than mine. The tears came and didn't stop for a while (they were overdue anyway), but then the laughter came. Mrs Bad Fairy was following another blog - http://alrighttit.blogspot.com/ This is what made me giggle and continues to do so. Lisa Lynch, who wrote it, was diagnosed in 2008 and still continues to add to it. She's also written a book on the back of this blog called The C-Word. Read it if you get the opportunity, but be warned there's a lot of bad language. Lisa says the things we all want to say, but can't for fear of offending family and friends. I'm working my way through it and think it's brilliant. You're all very kind about my blog but it's not a patch on hers! Love it!
Friday, 15 October 2010
Antibiotics again
Had the District Nurse round this morning to change the PICC dressing, flush the line and see if blood can still be drawn. It was Mary. I've known Mary since I started work and she is one of the most caring, dedicated, down to earth people I know. I love her to bits. She retired today after 20+ years. There was a "do" for her at the local hospital which, I've been told, was packed. I would've gone, but I'm in my vulnerable period and am told to stay away from crowds! Anyway, I was really touched that Mary came to tend to me on her last day. I have great respect for her and am honoured to call her a friend. She will leave a great hole in the community team.
Last night my arm started to get a bit red and itchy near the dressing. Knowing the District Nurse was coming today, I wasn't too concerned. It wasn't hurting and I didn't feel unwell (ha, well no more than usual!). It became apparent when Mary changed the dressing that the entry site was also red. Mary rang the chemo suite and Bea, my chemo nurse said that she would talk to the registrar and ring back - I may have to go in and let them look at it. Luckily, the decision was that if I wasn't feeling unwell, the GP could prescribe antibiotics and I could stay put as long as things don't get worse or the infection doesn't become systemic.
So, a phone call to the GP later and Chris popped out to pick up some Flucloxacillin for me. A 7 day course - 4 a day. At least I've started them before it gets any worse. Don't want to go back "inside"!
Chris is out to a Futsal match with Adam in Swindon, Vaughan is hoping to go to the fair and I'm sure Livi will be also be out later. So, it's just me and Mum and the new Sky+ HD box that arrived today!!!! That's when it's set up ofcourse, the instructions state that it may take 4 hours! Half an hour to go and then I'm ringing them.............
Last night my arm started to get a bit red and itchy near the dressing. Knowing the District Nurse was coming today, I wasn't too concerned. It wasn't hurting and I didn't feel unwell (ha, well no more than usual!). It became apparent when Mary changed the dressing that the entry site was also red. Mary rang the chemo suite and Bea, my chemo nurse said that she would talk to the registrar and ring back - I may have to go in and let them look at it. Luckily, the decision was that if I wasn't feeling unwell, the GP could prescribe antibiotics and I could stay put as long as things don't get worse or the infection doesn't become systemic.
So, a phone call to the GP later and Chris popped out to pick up some Flucloxacillin for me. A 7 day course - 4 a day. At least I've started them before it gets any worse. Don't want to go back "inside"!
Chris is out to a Futsal match with Adam in Swindon, Vaughan is hoping to go to the fair and I'm sure Livi will be also be out later. So, it's just me and Mum and the new Sky+ HD box that arrived today!!!! That's when it's set up ofcourse, the instructions state that it may take 4 hours! Half an hour to go and then I'm ringing them.............
Thursday, 14 October 2010
Quick update
I'm slowly coming out of my chemo fog. I think it's been better than the last 2. I didn't seem to have the constant nausea as I previously did. Not sure if this is because I'm getting used to it or because I have been eating and sleeping more! Whatever it is, it made it a little easier.
I don't quite know how to describe how I feel when it takes hold. It is like a fog.
It takes over my head, I can't think (other than how yuck I feel!) and manage only to manoeuvre myself from the bedroom to the sofa and back again. I just feel rotten. Luckily this only lasts for a few days. I know I'm getting better because my head starts to clear. I still feel nauseous but it only comes in waves.
My head, neck and chest go red and my face becomes round due to the steroids. I look sick and that makes me feel worse. The first few days I feel very shakey inside. It's like my body goes into shock, trying to cope with the poisons that have invaded it. My mouth feels thick and swollen and there's a foul stale taste. I have mints, chewing gum and fruit pastilles (a throw back from Jane's gift after my mastectomy) by my side to try and counteract this, but, of course, the sweet ends and the taste is back. Then there's the tablets I have to take to minimise the side effects of the chemo. They have their own side effects!
I really look forward to my last week. That seems to be the best - the run up to the next session! The 2nd week is obviously better than the first, but, I think because I obsess about infection, it's not as good as the 3rd and final week!
Anyway, not much to report other than how I feel and have felt. Other than Mum's lovely cooking, ferrying the kids and generally looking after us all!
Throughout all this though, what I have to remember is IT'S DOING ME GOOD, CHEMO IS MY FRIEND! It's making me better, so maybe a small price to pay..........
I don't quite know how to describe how I feel when it takes hold. It is like a fog.
It takes over my head, I can't think (other than how yuck I feel!) and manage only to manoeuvre myself from the bedroom to the sofa and back again. I just feel rotten. Luckily this only lasts for a few days. I know I'm getting better because my head starts to clear. I still feel nauseous but it only comes in waves.
My head, neck and chest go red and my face becomes round due to the steroids. I look sick and that makes me feel worse. The first few days I feel very shakey inside. It's like my body goes into shock, trying to cope with the poisons that have invaded it. My mouth feels thick and swollen and there's a foul stale taste. I have mints, chewing gum and fruit pastilles (a throw back from Jane's gift after my mastectomy) by my side to try and counteract this, but, of course, the sweet ends and the taste is back. Then there's the tablets I have to take to minimise the side effects of the chemo. They have their own side effects!
I really look forward to my last week. That seems to be the best - the run up to the next session! The 2nd week is obviously better than the first, but, I think because I obsess about infection, it's not as good as the 3rd and final week!
Anyway, not much to report other than how I feel and have felt. Other than Mum's lovely cooking, ferrying the kids and generally looking after us all!
Throughout all this though, what I have to remember is IT'S DOING ME GOOD, CHEMO IS MY FRIEND! It's making me better, so maybe a small price to pay..........
Saturday, 9 October 2010
Quick trip to work then last FEC - half way there!
On Thursday (always my best day before Chemo Friday), I popped in to work to take in my latest sick note.
It was lovely to see those who were there - everyone very complimentary as usual. Then I sat in Gaynor's office for about an hour yapping about work (sorry I kept you) - loved it! Chris said I was glowing when I came home! The thing is, I'm living in this chemo bubble and it's so refreshing to talk about something else.
Mum and I arrived a bit late to the Oncology Department yesterday, so we didn't have to wait very long before being called into the Chemo Suite. I'd worn one of Auntie M's scarfhats and as it was quite warm, I decided to take it off once we'd got settled and go commando.
Bea, my nurse came along and told me that instead of booking me in for a Hickman line, they wanted to try an injection into my PICC line to try and clear it (a sort of heavy duty drain cleaner!). This meant that we had an hour to kill before starting the chemo regime. So, we pootled off to Reception to get our £1 parking ticket for the next chemo appointment - 29th October. On the way back, we stopped for a coffee/hot chocolate in the League of Friends coffee shop (much better than the atrium - would recommend it). Oh and guess what..........? I went commando all the way!
Got back to the chemo suite and before starting the treatment, Bea went into the line to get bloods and was successful! We'll see how long that lasts! I was given my ice lolly (orange this time) and Mum went to get me some water to top up. She came back looking quite sheepish. As she tried to get the cups out, she took out too many. Trying to put the others back, she knocked the top off which went rolling down the corridor. This was in front of patients on the day ward having blood transfusions etc. Mum was mortified, but I think the patients were probably too poorly to notice. My dressing needed to be changed, but as there seems to have been a skin reaction to the waterproof dressing, they've changed it to a non waterproof one. As I can't get it wet, my shower's will be interesting!
The whole thing took about 3 1/2 hours this time. We'd bought a couple of baps in the coffee shop and scoffed those in the car before leaving. We got home just as Chris was arriving back from picking the boys up from school.
I was really tired when we got home, so I went for a kip (I'm getting good at these!). Didn't feel particularly bright in the evening and looked forward to bed again.
Today, Saturday, after an interrupted sleep, I got up and left Chris in bed. He'd been up early to take Livi to work for 06:30, so was snoring contentedly! Mum was up and we sat and watched the Commonwealth Games until eventually the rest of the clan rose. All were grateful for the breakfasts Mum cooked for them! As she wanted to go to Leekes, we thought it a good idea if I go with her. It may be a couple of days before I want to even attempt to go out. Had a shower of sorts and got ready. Mum and Dad had bought me a jersey hat from suburban turbans and it arrived this morning, so I wore that out too (photos to follow, hopefully).
After Leekes, I was tired (again!) and needed to take my tablets and injection. This went well (expert now) and I had a nap, before coming down to indulge in Strictly and an Indian meal from Sainsbury's.
If things go as they have previously, I probably won't be posting for a while. So, before I crawl away into my little hole, I'll say bye bye for now and Happy 46th Anniversary to my Auntie Rita and Uncle Brent for tomorrow!
xx
It was lovely to see those who were there - everyone very complimentary as usual. Then I sat in Gaynor's office for about an hour yapping about work (sorry I kept you) - loved it! Chris said I was glowing when I came home! The thing is, I'm living in this chemo bubble and it's so refreshing to talk about something else.
Mum and I arrived a bit late to the Oncology Department yesterday, so we didn't have to wait very long before being called into the Chemo Suite. I'd worn one of Auntie M's scarfhats and as it was quite warm, I decided to take it off once we'd got settled and go commando.
Bea, my nurse came along and told me that instead of booking me in for a Hickman line, they wanted to try an injection into my PICC line to try and clear it (a sort of heavy duty drain cleaner!). This meant that we had an hour to kill before starting the chemo regime. So, we pootled off to Reception to get our £1 parking ticket for the next chemo appointment - 29th October. On the way back, we stopped for a coffee/hot chocolate in the League of Friends coffee shop (much better than the atrium - would recommend it). Oh and guess what..........? I went commando all the way!
Got back to the chemo suite and before starting the treatment, Bea went into the line to get bloods and was successful! We'll see how long that lasts! I was given my ice lolly (orange this time) and Mum went to get me some water to top up. She came back looking quite sheepish. As she tried to get the cups out, she took out too many. Trying to put the others back, she knocked the top off which went rolling down the corridor. This was in front of patients on the day ward having blood transfusions etc. Mum was mortified, but I think the patients were probably too poorly to notice. My dressing needed to be changed, but as there seems to have been a skin reaction to the waterproof dressing, they've changed it to a non waterproof one. As I can't get it wet, my shower's will be interesting!
The whole thing took about 3 1/2 hours this time. We'd bought a couple of baps in the coffee shop and scoffed those in the car before leaving. We got home just as Chris was arriving back from picking the boys up from school.
I was really tired when we got home, so I went for a kip (I'm getting good at these!). Didn't feel particularly bright in the evening and looked forward to bed again.
Today, Saturday, after an interrupted sleep, I got up and left Chris in bed. He'd been up early to take Livi to work for 06:30, so was snoring contentedly! Mum was up and we sat and watched the Commonwealth Games until eventually the rest of the clan rose. All were grateful for the breakfasts Mum cooked for them! As she wanted to go to Leekes, we thought it a good idea if I go with her. It may be a couple of days before I want to even attempt to go out. Had a shower of sorts and got ready. Mum and Dad had bought me a jersey hat from suburban turbans and it arrived this morning, so I wore that out too (photos to follow, hopefully).
After Leekes, I was tired (again!) and needed to take my tablets and injection. This went well (expert now) and I had a nap, before coming down to indulge in Strictly and an Indian meal from Sainsbury's.
If things go as they have previously, I probably won't be posting for a while. So, before I crawl away into my little hole, I'll say bye bye for now and Happy 46th Anniversary to my Auntie Rita and Uncle Brent for tomorrow!
xx
Wednesday, 6 October 2010
Pin cushion - again
Today was oncologist and bloods day. Mum (who arrived last night) enjoyed people watching in the waiting room, she in a high chair and me beside her in a low chair. There are chairs of differing heights in the oncology waiting room (most of them high) but because it was very busy today, the only 2 chairs next to each other were 1 high, 1 low. I was a little girl again with my mummy looking down at me - something that's not happened for a long time - quite a strange sight really! We sat and wig spotted and admired those that had gone commando.
After a while, I was called in to have my bloods taken. I told the phlebotomist about the badly behaved PICC line and that the best place for her to get blood out was in the back of my wrist. She didn't take any notice of that, but decided that there were some juicy veins in the back of my hand. I bowed to her experience and said no more. However, one sight of the needle and my vein ran for cover. OK, let's try another.....mmmmm.....no.........and another......yay! One vial later and this one decided enough was enough. Well it wasn't enough and we needed another vial filling! So the other phlebotomist tried in another vein. Slowly, slowly, it finally came out. By this time my hand was looking like it had erupted in cotton wool boils! One of the phlebotomists told me that she only ever need 2 attempts, at most, to get blood and that I was very odd. The other one said she enjoyed a challenge and I promised that I'd go back into the waiting room with my hand covered, so as not to frighten the next patients.
Another wait and more people watching (and listening) and we were finally called into the clinic. This time it was Dr Newman (my official consultant). I saw him when I was in my little room in hospital and it was he who decided I should have the injection after each chemo. I explained about the PICC line and the struggle to get blood from my hand. He thinks it would be better if I have a Hickman line fitted. This is where a line is inserted just below your collar bone into a large vein near the heart and comes out lower down the chest. The chemo team will sort this out, so I guess I just have to wait for an appointment. I'm sure we'll find out more on Friday. So I should enjoy having a shower (currently, with my arm sticking out of the shower - can't get the PiCC wet!) for now, as I'm sure I'll have to be even more innovative when the Hickman is in place! More drugs from pharmacy followed and more to come on Friday - mustn't forget.
Mum and I had lunch at a local garden centre before coming home, where Livi was waiting for Mum to help her bake cakes! She's participating in a fundraising event at college tomorrow. Livi and 2 friends are selling homemade cakes for the college's breast cancer campaign, so she enlisted the help of an expert!
Chris went to watch Vaughan in a school rugby match, where he scored a try and they won 56 - 0. They arrived home happy!
Adam is due to go and see a play about the Enron scandal at the theatre tomorrow evening.
Yesterday I went shopping with Susie B (thank you my sweetie!). The last time we did this was when our kids were at primary school! How time flies. We left after the nurse had been and flushed me and spent an enjoyable afternoon mooching round the shops. Yes, I got my lippy! Actually I got 2. Didn't get Dior (not very long lasting), but got some Lancome (seemed to last a bit longer) - couldn't resist the colours. I could've bought the whole selection but settled on "red on fire" and "pink in the limo". I also splashed out on some MAC gel eyeliner and a brush - need plenty of practise with this one! We went for lunch at an Italian restaurant near the theatre before continuing (well, we needed our energy levels boosting!). Susie also splashed out and we were both knacked by the end of it. Yes, I did fall asleep when I got home (no change there then)! Unfortunately I can't show you pics, as I still can't seem to post any on here. I'll keep trying though............
After a while, I was called in to have my bloods taken. I told the phlebotomist about the badly behaved PICC line and that the best place for her to get blood out was in the back of my wrist. She didn't take any notice of that, but decided that there were some juicy veins in the back of my hand. I bowed to her experience and said no more. However, one sight of the needle and my vein ran for cover. OK, let's try another.....mmmmm.....no.........and another......yay! One vial later and this one decided enough was enough. Well it wasn't enough and we needed another vial filling! So the other phlebotomist tried in another vein. Slowly, slowly, it finally came out. By this time my hand was looking like it had erupted in cotton wool boils! One of the phlebotomists told me that she only ever need 2 attempts, at most, to get blood and that I was very odd. The other one said she enjoyed a challenge and I promised that I'd go back into the waiting room with my hand covered, so as not to frighten the next patients.
Another wait and more people watching (and listening) and we were finally called into the clinic. This time it was Dr Newman (my official consultant). I saw him when I was in my little room in hospital and it was he who decided I should have the injection after each chemo. I explained about the PICC line and the struggle to get blood from my hand. He thinks it would be better if I have a Hickman line fitted. This is where a line is inserted just below your collar bone into a large vein near the heart and comes out lower down the chest. The chemo team will sort this out, so I guess I just have to wait for an appointment. I'm sure we'll find out more on Friday. So I should enjoy having a shower (currently, with my arm sticking out of the shower - can't get the PiCC wet!) for now, as I'm sure I'll have to be even more innovative when the Hickman is in place! More drugs from pharmacy followed and more to come on Friday - mustn't forget.
Mum and I had lunch at a local garden centre before coming home, where Livi was waiting for Mum to help her bake cakes! She's participating in a fundraising event at college tomorrow. Livi and 2 friends are selling homemade cakes for the college's breast cancer campaign, so she enlisted the help of an expert!
Chris went to watch Vaughan in a school rugby match, where he scored a try and they won 56 - 0. They arrived home happy!
Adam is due to go and see a play about the Enron scandal at the theatre tomorrow evening.
Yesterday I went shopping with Susie B (thank you my sweetie!). The last time we did this was when our kids were at primary school! How time flies. We left after the nurse had been and flushed me and spent an enjoyable afternoon mooching round the shops. Yes, I got my lippy! Actually I got 2. Didn't get Dior (not very long lasting), but got some Lancome (seemed to last a bit longer) - couldn't resist the colours. I could've bought the whole selection but settled on "red on fire" and "pink in the limo". I also splashed out on some MAC gel eyeliner and a brush - need plenty of practise with this one! We went for lunch at an Italian restaurant near the theatre before continuing (well, we needed our energy levels boosting!). Susie also splashed out and we were both knacked by the end of it. Yes, I did fall asleep when I got home (no change there then)! Unfortunately I can't show you pics, as I still can't seem to post any on here. I'll keep trying though............
Monday, 4 October 2010
This week is countdown to my next chemo session on Friday. I have an appointment first with the oncologist on Wednesday, along with blood tests. Mum has the delight of coming with me this time. She'll be able to see what I'm talking about each time I go. The thought of chemo, though, doesn't fill me with delight. However, it will be number 3 and I'll be half way there - as long as I can stick to the schedule.
Tomorrow is community nurse day, when they come and flush my PICC line. I'm hoping it'll be the morning, as my friend Susie B is going to take me shopping for lippy!
Vaughan's school rugby match was eventful. They won 46-0, but he came home with a black eye! He wasn't keen to have a pack of peas put on it, in case it disappeared. He's been proudly showing it off at school since.
I think the colds within the family are subsiding. They all seem to be improving - just left with snotty noses and coughs (lovely). I'm still keeping them at bay as much as I can. This is difficult when we're such a tactile family. My boys, especially, have been missing my cuddles (not Chris, of course - he's been glad of the break). I'm going to have to let him back in our bedroom though, as Mum's coming back up tomorrow!
The hair situation has been interesting. I imagined that I would lose all of it and I haven't. I've still got my eyebrows and eyelashes - that's not to say that the Taxotere won't get rid of them, but it's nice to see them still there for now. My head looks strange - it's like a white cap with stubble! I would show you a photo, but I can't seem to get it uploaded! Still have hair on my arms but not so much on my legs and it seems to be growing back slower after shaving.
Mum has found a great website (suburbanturbans) selling scarves, hats and turbans - a bit different from the usual ones you see. So, maybe a new look soon........
Tomorrow is community nurse day, when they come and flush my PICC line. I'm hoping it'll be the morning, as my friend Susie B is going to take me shopping for lippy!
Vaughan's school rugby match was eventful. They won 46-0, but he came home with a black eye! He wasn't keen to have a pack of peas put on it, in case it disappeared. He's been proudly showing it off at school since.
I think the colds within the family are subsiding. They all seem to be improving - just left with snotty noses and coughs (lovely). I'm still keeping them at bay as much as I can. This is difficult when we're such a tactile family. My boys, especially, have been missing my cuddles (not Chris, of course - he's been glad of the break). I'm going to have to let him back in our bedroom though, as Mum's coming back up tomorrow!
The hair situation has been interesting. I imagined that I would lose all of it and I haven't. I've still got my eyebrows and eyelashes - that's not to say that the Taxotere won't get rid of them, but it's nice to see them still there for now. My head looks strange - it's like a white cap with stubble! I would show you a photo, but I can't seem to get it uploaded! Still have hair on my arms but not so much on my legs and it seems to be growing back slower after shaving.
Mum has found a great website (suburbanturbans) selling scarves, hats and turbans - a bit different from the usual ones you see. So, maybe a new look soon........
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