Last week was fairly busy with various clinical visits and appointments, but the main ones were with the maxilliofacial consultant at the hospital to look at my mouth and remnants of the infection, and with my oncologist to discuss next steps.
The appointment with the maxilliofacial consultant went really well. My mouth is 'nice' and the infection looks to be completely gone. He was very happy with progress but is keeping me on his books so if there are any problems in the next six months, I can call them to ask for advice - and then I go see them in October for hopefully a final appointment. So great news there.
On the other hand, the oncology appointment was not so great. I thought the plan was that I would be starting with chemo mid-April to reduce whatever is happening in my liver; the cancer isn't going away, of course. However, with all the problems I have had, she feels that it is not in my best interest to have chemo right now - if ever in the future. My body won't take it and the chemo won't reduce the cancer in my liver enough to justify the side effects and other risks. She is worried that my quality of life will be awful if I go through it and I understand that. In addition, where I have fluid pooling in my body will be where the chemo drugs pool too - and I don't have cancer there! So even if my body could take it, there's no guarantee that the chemo would go to where it's needed and would just attack healthy cells. It was a real shock to be told that my body was in such poor condition; it still is when I think about it. I don't like being properly unwell. So bad news in that respect but good news - no horrible chemo! I've also been taken off hormone tablets which aren't working to reduce anything.
In terms of how the cancer's being managed, therefore, it's continue as we are, managing the symptoms rather than the cancer itself. The bone cancer is manageable still and I don't think I really need to worry too much about that. It's the liver cancer that may be a problem. I'm being sent for some more scans over the next few weeks to see progression, but originally there were just spots of it so fingers crossed it's staying slow.
How I'm managing breast cancer that has developed into secondary bone and liver cancer
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Wednesday, 23 April 2014
Monday, 14 April 2014
Moving On!
Yes, I am moving on, literally!
It's getting easier to stand up, virtually unaided by another person - although I do still need to be raised a little before doing so and to use my zimmer frame or walking trolley for balance. I'm walking with the trolley, which is much easier and more 'natural' feeling than the zimmer frame - plus I feel slighty less old-lady-ish with it. I really need to get on with pimping it somehow...
But the real treat is that we are getting more and more used to going out in the car; we seem to have got the knack of this really well. We've been out for a few more meals and we had a lovely time at Harbour Park yesterday. It's amazing to be able to do these things as a family again - I missed it so much.
Next steps this week are to check out my infection - or lack of - with the maxilliofacial people at the hospital (tomorrow) and to start to think about chemo with the oncologist (Wednesday). What fun!
It's getting easier to stand up, virtually unaided by another person - although I do still need to be raised a little before doing so and to use my zimmer frame or walking trolley for balance. I'm walking with the trolley, which is much easier and more 'natural' feeling than the zimmer frame - plus I feel slighty less old-lady-ish with it. I really need to get on with pimping it somehow...
But the real treat is that we are getting more and more used to going out in the car; we seem to have got the knack of this really well. We've been out for a few more meals and we had a lovely time at Harbour Park yesterday. It's amazing to be able to do these things as a family again - I missed it so much.
Next steps this week are to check out my infection - or lack of - with the maxilliofacial people at the hospital (tomorrow) and to start to think about chemo with the oncologist (Wednesday). What fun!
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Friday, 7 March 2014
Until it all goes wrong
Just before Christmas, I had another blip whereby the pain was so bad it was hard to move. Of course, it all happened at my work's Christmas do, which I had been looking forward to for months, so I had to leave early. Typical! So we contacted the GP and my hospice nurse who arranged for another MRI scan to be carried out at the local hospital. This was done, I spent another night in a ward and then was transferred back to the bigger hospital for another dose of radiotherapy. Luckily, I was only there for a couple of nights and the treatment did the trick. This meant I was able to have the Christmas at home I wanted, cooking my perfect meal with my family and presents, food and wine galore. Fantastic!
However, fairly soon after this, I noticed my legs and feet were getting really puffy. I had an appointment with my oncologist mid January 2014 who said it was just one of those things that sometimes happens and the treatment is sometimes worse than the cure; I was advised to keep my feet up as much as possible. Easier said than done! I also got the results of the MRI and a bone scan - the cancer had spread in my bones - but they had forgotten to do a CT scan so we didn't know about the liver. But chances were, that had spread too. Not a surprise, but disappointing that the hormone treatments weren't 100% working. It looked like chemo is in the future.
In addition, it turned out that a medication I had been taking to strengthen my bones and help with the calcium problem had done something weird with the bones in my mouth, so I needed to have surgery at the end of January to sort this out. This was done by the maxillofacial unit at the local hospital, and seemed to be a quick and easy operation despite the fact my jaw was quite painful afterwards. They said this was normal.
However, none of this stopped us from carrying on as normally as we could but each day was getting harder, especially as my legs became heavier, my mouth hurt and it was hard to eat and I felt more and more unwell. Despite this, we booked a local holiday at the beginning of February to have a break and celebrate my birthday. We had a wonderful time and I thank everyone who helped us to go so, so much! We got a disabled lodge for five of us but were upgraded to an even better one in which we each had our own room (husband and I shared though!) with en suite and an outdoor hot tub which was amazing! The girls loved it! They went swimming and to the indoor playground whilst I relaxed, we went out for some gorgeous meals and outings. But again, each day I was feeling worse and my mouth was being really weird and painful to the point I could barely open it and nearly everything tasted horrible.
On our final day, my legs started bleeding so we got the medics in. They advised us to go back to A&E - so we did. We left late afternoon, so we only missed one overnight stay and actually, I think it was better to leave earlier when it was quiet than be stuck in a queue with loads of people and traffic trying to check out at the same time early in the morning. And lucky we did - when we arrived at the local hospital's A&E, it transpired I had a massive infection in my jaw, presumably caused by the mouth surgery, that was treated immediately that evening. This was a most unpleasant experience involving local and general anaesthetic and pain, so I won't go into detail, but I ended up in intensive care for a couple of days and then transferred into a ward. I was there recovering for about a week and a half, with barely enough energy to lift my arms. And once again, because I was bed bound with heavy legs, my mobility has gone again. I was getting intravenous antibiotics, so was being poked constantly so cannulas could be fitted - I've ended up with a PICC line this time. This experience wasn't great but again, the staff couldn't do enough for me with limited resources. But it was very difficult and, if I'm honest, depressing.
So thank goodness for the local hospice. One of the doctors visited me and we ended up making plans to transfer me as soon as the infection had cleared, wounds had started healing well and I could move about a little. That's where I am now and it's amazing, as ever. The care is superb, the infection looks like it's almost gone, if not completely gone, the wound is looking ok and I am shuffling about as much as I can, this time with a lovely zimmer frame. It's now just a matter of getting things in place and my health up to scratch, so I can go home.
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| Oh Christmas Tree... |
In addition, it turned out that a medication I had been taking to strengthen my bones and help with the calcium problem had done something weird with the bones in my mouth, so I needed to have surgery at the end of January to sort this out. This was done by the maxillofacial unit at the local hospital, and seemed to be a quick and easy operation despite the fact my jaw was quite painful afterwards. They said this was normal.
However, none of this stopped us from carrying on as normally as we could but each day was getting harder, especially as my legs became heavier, my mouth hurt and it was hard to eat and I felt more and more unwell. Despite this, we booked a local holiday at the beginning of February to have a break and celebrate my birthday. We had a wonderful time and I thank everyone who helped us to go so, so much! We got a disabled lodge for five of us but were upgraded to an even better one in which we each had our own room (husband and I shared though!) with en suite and an outdoor hot tub which was amazing! The girls loved it! They went swimming and to the indoor playground whilst I relaxed, we went out for some gorgeous meals and outings. But again, each day I was feeling worse and my mouth was being really weird and painful to the point I could barely open it and nearly everything tasted horrible.
On our final day, my legs started bleeding so we got the medics in. They advised us to go back to A&E - so we did. We left late afternoon, so we only missed one overnight stay and actually, I think it was better to leave earlier when it was quiet than be stuck in a queue with loads of people and traffic trying to check out at the same time early in the morning. And lucky we did - when we arrived at the local hospital's A&E, it transpired I had a massive infection in my jaw, presumably caused by the mouth surgery, that was treated immediately that evening. This was a most unpleasant experience involving local and general anaesthetic and pain, so I won't go into detail, but I ended up in intensive care for a couple of days and then transferred into a ward. I was there recovering for about a week and a half, with barely enough energy to lift my arms. And once again, because I was bed bound with heavy legs, my mobility has gone again. I was getting intravenous antibiotics, so was being poked constantly so cannulas could be fitted - I've ended up with a PICC line this time. This experience wasn't great but again, the staff couldn't do enough for me with limited resources. But it was very difficult and, if I'm honest, depressing.
So thank goodness for the local hospice. One of the doctors visited me and we ended up making plans to transfer me as soon as the infection had cleared, wounds had started healing well and I could move about a little. That's where I am now and it's amazing, as ever. The care is superb, the infection looks like it's almost gone, if not completely gone, the wound is looking ok and I am shuffling about as much as I can, this time with a lovely zimmer frame. It's now just a matter of getting things in place and my health up to scratch, so I can go home.
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Wednesday, 27 October 2010
Final chemo cycle!! Day 1
It's over! At least, getting the stuff put in is over, and I am over the moon. Had a little wobble at the hospital but the nurse said that is entirely normal and I wonder if it got me fast tracked a little.
As usual, started feeling woozy about halfway through it getting put in, but it wasn't as bad as the previous two sessions. Got unplugged and then got out of there as quickly as possible. Started feeling tired on the way home, so went straight to bed (it was about 3pm) and dozed then slept pretty much till 9.30am this morning. Had DD2 in bed with me all night, so that was lovely too.
Still feel dozy today but better. Looking forward to the head stuff going, hopefully in the next 24-48 hours, but not looking forward to the muscle ache which will most likely be at the weekend. But I have a ton of codeine and sleeping tablets to get me through, plus my wonderful family and friends who are the bestest ever.
So, hopefully, by this time next week, I can start getting back to normal and preparing for the stupid Hickman line to come out (15th Nov) and radiotherapy to start (16th Nov). Both of which will hopefully be fine. Oh and I get 5 years of a hormone pill too, but can talk about stopping that after 2 years for various reasons....
I will also need to rename this blog I think. Thinking along the lines of 'My Kicking Cancer's Ass Blog' but any other suggestions welcomed!!
As usual, started feeling woozy about halfway through it getting put in, but it wasn't as bad as the previous two sessions. Got unplugged and then got out of there as quickly as possible. Started feeling tired on the way home, so went straight to bed (it was about 3pm) and dozed then slept pretty much till 9.30am this morning. Had DD2 in bed with me all night, so that was lovely too.
Still feel dozy today but better. Looking forward to the head stuff going, hopefully in the next 24-48 hours, but not looking forward to the muscle ache which will most likely be at the weekend. But I have a ton of codeine and sleeping tablets to get me through, plus my wonderful family and friends who are the bestest ever.
So, hopefully, by this time next week, I can start getting back to normal and preparing for the stupid Hickman line to come out (15th Nov) and radiotherapy to start (16th Nov). Both of which will hopefully be fine. Oh and I get 5 years of a hormone pill too, but can talk about stopping that after 2 years for various reasons....
I will also need to rename this blog I think. Thinking along the lines of 'My Kicking Cancer's Ass Blog' but any other suggestions welcomed!!
Thursday, 14 October 2010
Chemo cycle 5: Days 7 - 10
Day 7: woke up feeling much better although still pretty sore and tired. Spent the day with DD2 which was lovely, lots of cuddles on the sofa!
Day 8: We booked DD2 into nursery today so I could keep resting. Which I did! I had a couple of paracetomol in the morning, but that was pretty much it all day. The soreness was fading! Still had achy gums, nails and chemo mouth though. Bah. Got a handy tip, that tonic water helps with the taste - and it does! Better stock up for next (and last) time!
Day 9: A much, much better day with no painkillers at all! The chemo mouth was fading and the weird aches and pains were much, much less. Took the DDs to get their hair cut at friends' house and had a lovely time. It was brilliant to get out.
Day 10: today. In theory, today was the last day of my recuperation. But DH realised this morning that he couldn't do the school run and, do you know, I fancied it! So I did - boo sucks to germs! (Although there was a man coughing right by me, of course. But I moved.) Then had a nice morning pottering and managed to have a semi-decent lunch that tasted almost right, before collecting DD2 and avoiding coughing people. I feel much, much better today and am looking forward to a week and a half of normality before MY LAST CHEMO SESSION!! I can't wait for it to be over.
Day 8: We booked DD2 into nursery today so I could keep resting. Which I did! I had a couple of paracetomol in the morning, but that was pretty much it all day. The soreness was fading! Still had achy gums, nails and chemo mouth though. Bah. Got a handy tip, that tonic water helps with the taste - and it does! Better stock up for next (and last) time!
Day 9: A much, much better day with no painkillers at all! The chemo mouth was fading and the weird aches and pains were much, much less. Took the DDs to get their hair cut at friends' house and had a lovely time. It was brilliant to get out.
Day 10: today. In theory, today was the last day of my recuperation. But DH realised this morning that he couldn't do the school run and, do you know, I fancied it! So I did - boo sucks to germs! (Although there was a man coughing right by me, of course. But I moved.) Then had a nice morning pottering and managed to have a semi-decent lunch that tasted almost right, before collecting DD2 and avoiding coughing people. I feel much, much better today and am looking forward to a week and a half of normality before MY LAST CHEMO SESSION!! I can't wait for it to be over.
Monday, 11 October 2010
Chemo cycle 5: Days 4 - 6
I was right about the muscle pain. It kicked in on Friday (day 4). I basically spent the day on the sofa with my codeine within arm's reach! My head was still funny as well, so I couldn't read or do very much apart from watch the Commonwealth Games (yay go England!). I managed to stay up till about 7.30pm. What a fun Friday night!
On Saturday (day 5) it was pretty much the same, although my head felt a bit better. However, I still couldn't read so more telly for me. Hurrah for Twitter which makes me feel slightly more interactive than I would feel otherwise. Had a glass of wine for the first time in about a week, followed by more codeine and sleeping tablets in the hope that I would get a good night's sleep and wake up refreshed and ready to go. Managed to stay up till almost 9pm. Whoo!
Sunday (day 6) was a lot better; my plan worked to some extent! I slept quite well and woke up, still sore but feeling more like myself. DH warned me not to do too much though, so I did just spend the day resting even more and catching up with the X Factor and Hell's Kitchen!
So symptoms over the past 3 days have been: muscle ache and spasms, nail ache, tooth and gum ache, chemo mouth, sore throat, stupid brain.
This morning (day 7) it's A LOT better. Still sore, but it's fading. But my blooming nails still hurt which is just bizarre. But I plan to do more than chill today.
On Saturday (day 5) it was pretty much the same, although my head felt a bit better. However, I still couldn't read so more telly for me. Hurrah for Twitter which makes me feel slightly more interactive than I would feel otherwise. Had a glass of wine for the first time in about a week, followed by more codeine and sleeping tablets in the hope that I would get a good night's sleep and wake up refreshed and ready to go. Managed to stay up till almost 9pm. Whoo!
Sunday (day 6) was a lot better; my plan worked to some extent! I slept quite well and woke up, still sore but feeling more like myself. DH warned me not to do too much though, so I did just spend the day resting even more and catching up with the X Factor and Hell's Kitchen!
So symptoms over the past 3 days have been: muscle ache and spasms, nail ache, tooth and gum ache, chemo mouth, sore throat, stupid brain.
This morning (day 7) it's A LOT better. Still sore, but it's fading. But my blooming nails still hurt which is just bizarre. But I plan to do more than chill today.
Friday, 8 October 2010
Chemo cycle 5: Days 1 - 3
Let's focus on the main issue here now. Only one more to go!
But oh my goodness this one is horrible.
Day 1: Had to wait nearly 2 hours to see the consultant and then a further 1.5 hours to get the chemo. And the chemo takes an hour to administer. So we should have been out of there by about 2.30pm but weren't out till nearly 6pm. I managed to have a hot flush right at the beginning, meaning the nurse turned off my chemo for about 20 minutes, delaying it even further. And it is so boring! I lost concentration completely, so I couldn't read or even speak very well, so all I had to do was sit there and wait for the stuff to go in. Afterwards we drove home and I went straight to bed.
Day 2: A certain person (you know who you are!) described to me the feeling of having chemo as rhyming with scattered wit. That's how I felt on Wednesday. I was exhausted but also felt like an elephant had landed on me and given me a dose of swine flu and then kicked me when I was down for good measure. I had to get my Zoladex injection in the morning from the surgery, so luckily my mum was on hand to drive me, but I nearly fainted in the waiting room. Awful. Came home, collapsed on sofa. DH came home for the school run, took DD1 swimming and has really given me a chance to chill. Went to bed at 7, but didn't sleep all that well despite a sleeping tablet.
Day 3: A better day. Still felt pretty awful, but a better kind of awful. Again, spent the day resting and recuperating. BFF's mum did the school run for me - love all these wonderful people who can help! Managed to stay up till 8.30pm and catch the Apprentice (hurrah!) saved from Wednesday. But as I was going to bed, I noticed that the back of my neck and legs were starting to ache. Think that's what's coming next, although if this flu-ey feeling goes and the muscle pain stays, I don't mind. It's the messing with my head I hate.
Other symptoms: slight chemo mouth started yesterday, sore eyes last night, sore nails this morning.
But only one more. I just want it to be over now.
But oh my goodness this one is horrible.
Day 1: Had to wait nearly 2 hours to see the consultant and then a further 1.5 hours to get the chemo. And the chemo takes an hour to administer. So we should have been out of there by about 2.30pm but weren't out till nearly 6pm. I managed to have a hot flush right at the beginning, meaning the nurse turned off my chemo for about 20 minutes, delaying it even further. And it is so boring! I lost concentration completely, so I couldn't read or even speak very well, so all I had to do was sit there and wait for the stuff to go in. Afterwards we drove home and I went straight to bed.
Day 2: A certain person (you know who you are!) described to me the feeling of having chemo as rhyming with scattered wit. That's how I felt on Wednesday. I was exhausted but also felt like an elephant had landed on me and given me a dose of swine flu and then kicked me when I was down for good measure. I had to get my Zoladex injection in the morning from the surgery, so luckily my mum was on hand to drive me, but I nearly fainted in the waiting room. Awful. Came home, collapsed on sofa. DH came home for the school run, took DD1 swimming and has really given me a chance to chill. Went to bed at 7, but didn't sleep all that well despite a sleeping tablet.
Day 3: A better day. Still felt pretty awful, but a better kind of awful. Again, spent the day resting and recuperating. BFF's mum did the school run for me - love all these wonderful people who can help! Managed to stay up till 8.30pm and catch the Apprentice (hurrah!) saved from Wednesday. But as I was going to bed, I noticed that the back of my neck and legs were starting to ache. Think that's what's coming next, although if this flu-ey feeling goes and the muscle pain stays, I don't mind. It's the messing with my head I hate.
Other symptoms: slight chemo mouth started yesterday, sore eyes last night, sore nails this morning.
But only one more. I just want it to be over now.
Chemo cycle 4: entire
Well, thank you Google blogger for realising that this blog isn't spam and I can have it back now. I'm pretty annoyed about it, as cycle 4 was the first of the new stuff (I think it's called Docetaxel) and my symptoms were completely different and now I have to remember. Shouldn't be too hard though. I'm now on cycle 5 and I am remembering.
Cycle 4 wasn't too bad. The main problem was that my muscles just ached, all over, from the top of my head to the tips of my toes. I had to get the doctor out on the Monday following chemo as it was so bad that paracetamol wasn't working and I couldn't sleep due to the pain. And following that I managed to get a cold that lasted pretty much the rest of the cycle. What a joy. And then I repeated on Tuesday....
Cycle 4 wasn't too bad. The main problem was that my muscles just ached, all over, from the top of my head to the tips of my toes. I had to get the doctor out on the Monday following chemo as it was so bad that paracetamol wasn't working and I couldn't sleep due to the pain. And following that I managed to get a cold that lasted pretty much the rest of the cycle. What a joy. And then I repeated on Tuesday....
Wednesday, 15 September 2010
Chemo Cycle 4: Days 1 & 2
Woo! I am 2/3 of the way through, thank goodness! I won't bother writing a separate blog about the end of cycle 3 as it was quite nice, Muse were fabulous and I had no major symptoms. So I will start off with how yesterday went...
Day 1: Saw the consultant who confirmed that my drugs were to be changing from FEC to something else (don't remember the name). However, she said that if I hadn't been sick so far, these drugs were unlikely to chage that - if anything, they may be a bit better. She also confirmed that I needed stitches removed in the Hickman line (yuck) and said that she would ensure that the day unit knew.
Went through to the day unit and finally was shown through into the public area. I mentioned about the stitches needing to be removed - bearing in mind they were in the chest area and I didn't fancy stripping in front of everyone - and they seemed surprised, even though I had heard the nurse talking to them! Argh. And to give an idea of how far away the two units are, I would estimate about 15 metres. Double argh. So I managed to get into a private room. I was hooked up with no problems, told it would be about an hour and then the nurse said she would remove my stitches. I panicked. I don't know why though - I have had stitches removed before and know it doesn't hurt, but I did. But the nurse was great and talked me down and tried as much as possible to relax me, and finally the stitches were removed.
And then I started feeling yuck. I couldn't concentrate on my oh so difficult Grazia and I couldn't play on my phone. I felt sick but not sick (I know) and spinney*. I was lying back, but felt like I was going to fall down. I felt hot and cold. It was awful. I was literally counting down the minutes until it was over. They then flushed me out and I felt a tiny bit better but ugh it was horrible. DH took me home after we had to faff about for my next appointment and I went straight to bed.
Day 2: Woke up feeling more refreshed but still tired. My mum is here, so she took DD1 to school and DH took DD2 to nursery, so we had quite a relaxing morning. Until I looked at my drugs and realised that one was missing. So I phoned up the day unit who said 'oh yes, here it is in our fridge.' Another argh. So when DH came home early to take me to the radiotherapist, we had to first go to the main hospital to collect those drugs. So about 40 mins to get those and then say, 25 to get back to the local hospital in time for my radiotherapy appointment.
And yes, I am going to need 5 weeks of radiotherapy, starting the end of November. They will give me 3-4 weeks after the last chemo to recover and then I start that, every week day. And yes, that means I will be having to go in over the Christmas holidays, although I was told Christmas day is a Saturday so I won't have to actually go in that day (not that I think I would whatever day it happened to fall on, but you never know) thank goodness. PITA.
I'm not sure what to do about work though, as apparently you don't really get many symptoms from radiotherapy apart from tiredness. (My friend pointed out though, if I am going to have to do that blooming drive every day, of course I will be tired!) So I think I will see how I feel and take it from there.
Boo hiss to cancer.
*spinney in my world - how one feels when the world is spinning around, similar to dizzy. It is not a bushy copse.
Day 1: Saw the consultant who confirmed that my drugs were to be changing from FEC to something else (don't remember the name). However, she said that if I hadn't been sick so far, these drugs were unlikely to chage that - if anything, they may be a bit better. She also confirmed that I needed stitches removed in the Hickman line (yuck) and said that she would ensure that the day unit knew.
Went through to the day unit and finally was shown through into the public area. I mentioned about the stitches needing to be removed - bearing in mind they were in the chest area and I didn't fancy stripping in front of everyone - and they seemed surprised, even though I had heard the nurse talking to them! Argh. And to give an idea of how far away the two units are, I would estimate about 15 metres. Double argh. So I managed to get into a private room. I was hooked up with no problems, told it would be about an hour and then the nurse said she would remove my stitches. I panicked. I don't know why though - I have had stitches removed before and know it doesn't hurt, but I did. But the nurse was great and talked me down and tried as much as possible to relax me, and finally the stitches were removed.
And then I started feeling yuck. I couldn't concentrate on my oh so difficult Grazia and I couldn't play on my phone. I felt sick but not sick (I know) and spinney*. I was lying back, but felt like I was going to fall down. I felt hot and cold. It was awful. I was literally counting down the minutes until it was over. They then flushed me out and I felt a tiny bit better but ugh it was horrible. DH took me home after we had to faff about for my next appointment and I went straight to bed.
Day 2: Woke up feeling more refreshed but still tired. My mum is here, so she took DD1 to school and DH took DD2 to nursery, so we had quite a relaxing morning. Until I looked at my drugs and realised that one was missing. So I phoned up the day unit who said 'oh yes, here it is in our fridge.' Another argh. So when DH came home early to take me to the radiotherapist, we had to first go to the main hospital to collect those drugs. So about 40 mins to get those and then say, 25 to get back to the local hospital in time for my radiotherapy appointment.
And yes, I am going to need 5 weeks of radiotherapy, starting the end of November. They will give me 3-4 weeks after the last chemo to recover and then I start that, every week day. And yes, that means I will be having to go in over the Christmas holidays, although I was told Christmas day is a Saturday so I won't have to actually go in that day (not that I think I would whatever day it happened to fall on, but you never know) thank goodness. PITA.
I'm not sure what to do about work though, as apparently you don't really get many symptoms from radiotherapy apart from tiredness. (My friend pointed out though, if I am going to have to do that blooming drive every day, of course I will be tired!) So I think I will see how I feel and take it from there.
Boo hiss to cancer.
*spinney in my world - how one feels when the world is spinning around, similar to dizzy. It is not a bushy copse.
Wednesday, 8 September 2010
Chemo cycle 3: Days 12 - 16
These last few days have been brilliant. I have felt normal and have been able to get on with (most of) my life, thank goodness. The only weirdness is that my eyes have been dry and itchy over the last day or two - which happened last cycle as well. I do have some eye drops for that now though, so that's good.
I am not really looking forward to next week though. I have blood tests Monday, chemo on Tuesday and then an appointment with the radiotherapist on Wednesday to discuss whether or not I will need that as well. Fingers crossed I won't, but a lot of people have said that they often do it now as a preventative measure so I guess there is a large chance I may. *Sigh* That would make an additional 3-6 weeks of treatment possibly.
However, I am not going to worry about that now and quite frankly, I should not worry at all as there is nothing I can do to change what will be. I will go with whatever they recommend. I am going to enjoy the rest of this week and the weekend, when I will be seeing Muse at Wembley. Yay! So super excited!
I am not really looking forward to next week though. I have blood tests Monday, chemo on Tuesday and then an appointment with the radiotherapist on Wednesday to discuss whether or not I will need that as well. Fingers crossed I won't, but a lot of people have said that they often do it now as a preventative measure so I guess there is a large chance I may. *Sigh* That would make an additional 3-6 weeks of treatment possibly.
However, I am not going to worry about that now and quite frankly, I should not worry at all as there is nothing I can do to change what will be. I will go with whatever they recommend. I am going to enjoy the rest of this week and the weekend, when I will be seeing Muse at Wembley. Yay! So super excited!
Friday, 3 September 2010
Chemo cycle 3: Day 10 & 11
Day 10: first day back to school for DD1! We all took her in as a family, to meet her teacher and figure out where things were. I then had a nice time at home doing some chores and resting before picking her up. I do wonder if the other parents wonder why I am wearing a headscarf but who cares really? I suppose if they are that bothered they can always talk to me....
I was pretty exhausted in the evening though; I went to bed at 9! Guess laundry takes it out of me somewhat. Lolz etc.
Day 11 (today): Took DD1 in, had a lovely time at home and collected her. She helped me bake a cake for a friend too which was nice - looking forward to celebrating his birthday tomorrow! Tonight I plan to drink wine and watch Big Brother and other trash tv.
So all in all, things are on the up. I am starting to feel more human and normal and can have a nice week and a half before the next round, hopefully.
I was pretty exhausted in the evening though; I went to bed at 9! Guess laundry takes it out of me somewhat. Lolz etc.
Day 11 (today): Took DD1 in, had a lovely time at home and collected her. She helped me bake a cake for a friend too which was nice - looking forward to celebrating his birthday tomorrow! Tonight I plan to drink wine and watch Big Brother and other trash tv.
So all in all, things are on the up. I am starting to feel more human and normal and can have a nice week and a half before the next round, hopefully.
Thursday, 2 September 2010
Chemo cycle 3: Day 8 & 9
Day 8 was the worst. I felt awful and it's indescribable. A friend of mine who survived breast cancer said she described it as a bad flu, but even that doesn't cover it. I was exhausted and more. I felt like I was in a fog, that I was going to faint even when lying down and even a bit sick but not queasy. See what I mean? I can't really explain. But basically, it's horrible. Both girls were home, and even with DH working at home to help, it was still very difficult.
Day 9 I could feel I was starting to come out of it, but I still felt pretty rubbish. I was home with DD1 all day and she kept me company and was lovely, so it was a nice day even though I felt so bad. By the evening, I had enough energy to go to a friend's house to get the girls' hair cut - majorly overdue and urgent with school just about to start again! Had a terrible night's sleep though. The hot flushes really don't help.
Day 9 I could feel I was starting to come out of it, but I still felt pretty rubbish. I was home with DD1 all day and she kept me company and was lovely, so it was a nice day even though I felt so bad. By the evening, I had enough energy to go to a friend's house to get the girls' hair cut - majorly overdue and urgent with school just about to start again! Had a terrible night's sleep though. The hot flushes really don't help.
Monday, 30 August 2010
Chemo cycle 3: Day 6 & 7
Still exhausted - more so than before if that's possible! And still got the flipping gross taste in my mouth. But thank goodness for my husband who has held the fort, entertained the girls and cooked the best roast ever that actually meant I could eat for the first time in 24 hours today.
Surely the taste should be going soon? Even the wine tastes a bit off - although not enough to stop me enjoying it!
Surely the taste should be going soon? Even the wine tastes a bit off - although not enough to stop me enjoying it!
Sunday, 29 August 2010
Chemo cycle 3: Day 4 & 5
Not a lot to report. Very tired still, a bit foggy and that horrible metal taste just won't go away.
Had a lovely day with friends on day 5 though, which really cheered me up and has certainly helped! I am sure the copious amounts of wine had nothing to do with it.
Had a lovely day with friends on day 5 though, which really cheered me up and has certainly helped! I am sure the copious amounts of wine had nothing to do with it.
Friday, 27 August 2010
Chemo cycle 3: Day 2 & 3
Apart from the sickness feeling on day 1, the only real symptom so far has been tiredness. However, yesterday (day 2) I started to get the strange metal taste in my mouth and it's still going on. The first cycle, I only had it for 24 hours around day 7, the second cycle was more like 3 days whilst I was in hospital (so days 6-8 at a guess) and now it's earlier. Argh! As long as I can still drink coffee and eat, I suppose it's not that bad but it's pretty nasty.
Had to get the dressing on the Hickman line changed yesterday by a nurse at the local GP. They hadn't done a very good job in the chemo department, probably as they were so snowed under. I feel like an electrical appliance and it's catching everwhere!
Had to get the dressing on the Hickman line changed yesterday by a nurse at the local GP. They hadn't done a very good job in the chemo department, probably as they were so snowed under. I feel like an electrical appliance and it's catching everwhere!
Wednesday, 25 August 2010
Chemo cycle 3: Day 1
Hurrah! Finally got my third cycle completed and I am halfway through my treatment!
Apart from delays in the day unit, it went perfectly. They took off my dressings which I was worried about, but it was fine, and plugged me in and away I went! I was in a room with a few other people getting chemo this time (rather than a private room) and it was interesting and nice to chat to some of them. The only symptom I had was the tingly nose, right at the end.
Felt a but woozy in the car and was very tired by the time I got home. I relaxed on the sofa, had a meal but then started to feel extremely tired and a bit sick so I took the anti-sickness pills and went to bed. Dozed on and off until the end of Big Brother, so I know who won and I know who's in the Ultimate challenge! Not a bad start.
However, the consultant did mention that my drugs are changing from the next chemo, so I am slightly anxious about that and what they will do to me. But no point worrying now - will just have to get through this cycle first!
Apart from delays in the day unit, it went perfectly. They took off my dressings which I was worried about, but it was fine, and plugged me in and away I went! I was in a room with a few other people getting chemo this time (rather than a private room) and it was interesting and nice to chat to some of them. The only symptom I had was the tingly nose, right at the end.
Felt a but woozy in the car and was very tired by the time I got home. I relaxed on the sofa, had a meal but then started to feel extremely tired and a bit sick so I took the anti-sickness pills and went to bed. Dozed on and off until the end of Big Brother, so I know who won and I know who's in the Ultimate challenge! Not a bad start.
However, the consultant did mention that my drugs are changing from the next chemo, so I am slightly anxious about that and what they will do to me. But no point worrying now - will just have to get through this cycle first!
Sunday, 22 August 2010
Chemo cycle 2: Day 26 & 27
We'd booked a night at a hotel for me (well, all of us really) to relax and recuperate. It was mostly lovely apart from an incident with some dodgy towels, and the fact the pool was closed to children from 10am - 5pm. However, today I had a horrible experience at their spa.
I'd booked a facial in person yesterday. I think it's pretty obvious to most people that I am undergoing something seeing as I have no hair and bandages poking out from under my top. But they booked it fine, no problems, no queries. I got there this morning and had to fill in the standard medical form. After the lady took it from me, I could hear her and the bloke who had booked me in whispering loudly at reception. It was clear it was about me. There were other customers present. After a few minutes, she came to me to ask what sort of cancer it was. I told her it was breast cancer but I have been advised facials aren't a problem. She left again, only for me to hear more whispering at reception, and still there were other customers present.
I went over and asked if there was a problem. They said there was, that they weren't sure I could have a facial. Again, I explained that I have had facials since I was diagnosed and have been undergoing chemo but I've been told it's just the massage side of things from the neck down and ankles up that need to be avoided. Then they told me that about half of their facial is actually a neck and shoulder massage. Eh? What kind of facial is that? I know there is some element of massage in a facial, but it's usually been a small proportion of the treatment and therefore, therapists have just worked around it for me - one gave me a foot massage instead. They kept on arguing with me, making me feel small and in the wrong.
By this point I was super stressed and angry. They were being really obnoxious and dense and just shrugging at me and arguing with me, offering me no alternatives to one of their facials. Had one of them come over to me and privately said, we don't think you should have this facial as there is a substantial element of massage which we don't think is appropriate, would you like e.g. a pedicure or manicure instead, I would have said, fair enough, yes please. I just wanted something to help me relax! But it was the loud whispering in front of other people, the way they were trying to argue with me about a facial, like I was the one in the wrong. No-one was wrong, and I understand why they were concerned, but I was made to feel small and stupid. So I just told them to cancel the appointment and stormed off back to the room.
DH was cross on my behalf and we decided to inform the manager when we checked out. I had moved from angry to really, really upset. The manager couldn't have been nicer and agreed with DH that, instead of treating me as a problem, the staff should have found a solution. So to his credit, he is going to talk to the spa manager so hopefully no-one will be made to feel as awful as I was made to feel. And I think I get a complimentary spa day as an apology, although I am not sure I do actually want to go back there. But we'll see. And on Tuesday I am going to ask my oncologist again exactly what I can and can't have so if it happens again, I will be super informed.
I'd booked a facial in person yesterday. I think it's pretty obvious to most people that I am undergoing something seeing as I have no hair and bandages poking out from under my top. But they booked it fine, no problems, no queries. I got there this morning and had to fill in the standard medical form. After the lady took it from me, I could hear her and the bloke who had booked me in whispering loudly at reception. It was clear it was about me. There were other customers present. After a few minutes, she came to me to ask what sort of cancer it was. I told her it was breast cancer but I have been advised facials aren't a problem. She left again, only for me to hear more whispering at reception, and still there were other customers present.
I went over and asked if there was a problem. They said there was, that they weren't sure I could have a facial. Again, I explained that I have had facials since I was diagnosed and have been undergoing chemo but I've been told it's just the massage side of things from the neck down and ankles up that need to be avoided. Then they told me that about half of their facial is actually a neck and shoulder massage. Eh? What kind of facial is that? I know there is some element of massage in a facial, but it's usually been a small proportion of the treatment and therefore, therapists have just worked around it for me - one gave me a foot massage instead. They kept on arguing with me, making me feel small and in the wrong.
By this point I was super stressed and angry. They were being really obnoxious and dense and just shrugging at me and arguing with me, offering me no alternatives to one of their facials. Had one of them come over to me and privately said, we don't think you should have this facial as there is a substantial element of massage which we don't think is appropriate, would you like e.g. a pedicure or manicure instead, I would have said, fair enough, yes please. I just wanted something to help me relax! But it was the loud whispering in front of other people, the way they were trying to argue with me about a facial, like I was the one in the wrong. No-one was wrong, and I understand why they were concerned, but I was made to feel small and stupid. So I just told them to cancel the appointment and stormed off back to the room.
DH was cross on my behalf and we decided to inform the manager when we checked out. I had moved from angry to really, really upset. The manager couldn't have been nicer and agreed with DH that, instead of treating me as a problem, the staff should have found a solution. So to his credit, he is going to talk to the spa manager so hopefully no-one will be made to feel as awful as I was made to feel. And I think I get a complimentary spa day as an apology, although I am not sure I do actually want to go back there. But we'll see. And on Tuesday I am going to ask my oncologist again exactly what I can and can't have so if it happens again, I will be super informed.
Wednesday, 18 August 2010
Chemo cycle 2: Day 23
I was quite shocked to receive a call from the oncologist fairly early this morning (well, about 10.30am) confirming that my PICC line will be fitted on Friday! However, nothing is as simple as it seems. I need another blood test the day before and for that I need a form from her. It can't be done at the local hospital, so I have to wait for the post in the morning and hope this form is there. Then I get to go to a nearish hospital for the test. However, if it doesn't arrive I am not sure, but I think I have to call the main hospital and go there.
The following day (Friday) I must go to the main hospital for 9am and wait until called. It could be any time so I'd better bring a book!
The following day (Friday) I must go to the main hospital for 9am and wait until called. It could be any time so I'd better bring a book!
Tuesday, 17 August 2010
Chemo cycle 2: Day 22
Well, as you can guess by the title, I wasn't able to have chemo today. Clearly, I had a sneaking suspicion that would happen but I was still gutted, still am.
I didn't see my usual oncologist, as she was on leave, so I was quite nervous and irritated, as obviously she knows my history. The one I saw had read my notes, but still needed me to explain everything that had happened. We then spoke about the possibilities - have it in my rubbish arm but risk it flare up again, have it in the left arm and risk lymphedema, delay it and get a PICC line in me. I don't want a PICC line and I didn't want a delay so I said, let's try the rubbish arm, and if that doesn't work, risk the left.
However, she then took another look at my arm which is all blotchy still and said she needed a second opinion. The next oncologist (I guess!) said no, we shouldn't risk it and I need a PICC line. Words rhyming with duck and pit flashed through my brain. The one I am getting requires a local anaesthetic and surgery, as it's in my chest. So now I get to wait for that appointment to show up - not even sure which hospital will be contacting me - and get that in. Hopefully it will be in the next week and I can get my chemo next Tuesday. So keep everything crossed for me still!
I don't have much hope of it being in the next week though. But hey ho, it means I have at least a week of feeling vaguely normal!
I didn't see my usual oncologist, as she was on leave, so I was quite nervous and irritated, as obviously she knows my history. The one I saw had read my notes, but still needed me to explain everything that had happened. We then spoke about the possibilities - have it in my rubbish arm but risk it flare up again, have it in the left arm and risk lymphedema, delay it and get a PICC line in me. I don't want a PICC line and I didn't want a delay so I said, let's try the rubbish arm, and if that doesn't work, risk the left.
However, she then took another look at my arm which is all blotchy still and said she needed a second opinion. The next oncologist (I guess!) said no, we shouldn't risk it and I need a PICC line. Words rhyming with duck and pit flashed through my brain. The one I am getting requires a local anaesthetic and surgery, as it's in my chest. So now I get to wait for that appointment to show up - not even sure which hospital will be contacting me - and get that in. Hopefully it will be in the next week and I can get my chemo next Tuesday. So keep everything crossed for me still!
I don't have much hope of it being in the next week though. But hey ho, it means I have at least a week of feeling vaguely normal!
Tuesday, 10 August 2010
Chemo cycle 2: Day 15
Well, a fairly normal day today in that I have had both girls home, they have played, fought and generally been my little girls! I can't really drive so we didn't go anywhere except to DD1's swimming lesson; I would have taken them to the park but it was miserable all day. But that said, I managed to rest a little and am starting to feel vaguely normal, except for this arm.
However, I am starting to dread next week somewhat. I have to have my bloods done on Monday at the local hospital and then chemo 3 is on Tuesday. I don't see how they can take blood though, unless they can take it from somewhere else other than my arms.
(By the way, I don't think I have mentioned that I cannot use my left arm - the side my masectomy was on, and the side that the lymph glands were taken - for giving blood, blood pressure tests etc as this would run the risk of lymphedema. This is for the rest of my life. Yay. Therefore, I only have my right arm for chemo. It is my right arm that has the clot.)
So anyway, I think I may phone my oncologist tomorrow to reassure myself that things can be done as planned. I really don't want my chemo to be delayed at all, much less by a blooming clot.
However, I am starting to dread next week somewhat. I have to have my bloods done on Monday at the local hospital and then chemo 3 is on Tuesday. I don't see how they can take blood though, unless they can take it from somewhere else other than my arms.
(By the way, I don't think I have mentioned that I cannot use my left arm - the side my masectomy was on, and the side that the lymph glands were taken - for giving blood, blood pressure tests etc as this would run the risk of lymphedema. This is for the rest of my life. Yay. Therefore, I only have my right arm for chemo. It is my right arm that has the clot.)
So anyway, I think I may phone my oncologist tomorrow to reassure myself that things can be done as planned. I really don't want my chemo to be delayed at all, much less by a blooming clot.
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