I was back at the Marsden today for my second dose on Cycle 2....and the great news is that my paraprotein has come down from 27 to 15!!! We are both over the moon about it as it means that things are definitely going in the right direction, and even if I stopped there, it would be SO SO much better than where I was before for transplant. The nurse said it gave her goosebumps when she saw how much I had dropped in the first cycle.
Anyway, it definitely makes up for the exhaustion (kicking in again today!) and the back pain which I seem to have developed today too. If it works, I don't care what I go through!
That's it for today....afraid I'm too tired to think about what else to tell!!
xx
Friday, 15 April 2011
Tuesday, 12 April 2011
Just another long day ....
Well I'm at the hospital again. We got here nice and early in the hope that we could get out by lunchtime and enjoy some of the last sunshine in the local pub. I can't believe we haven't learnt our lesson...it's now 12.30, we've been here 3 hours and I havent even had my Zometa and fluids, let lone the velcade!!
Apparently something went funny with my blood so I had to redo them! I have seen the doctor though which is good. She seemed pleased that I've been well enough the last two days to clean our patio slabs and surprised that I've got the peripheral neuropathy already. It looks like my neutrophils are back down at 0.9 which is very low and means I have to self inject again tomorrow ....don't like stabbing myself with a needle but looks a necessity for me nowadays. I don't know my other results yet but will ask for them in a bit!
so at this rate it looks like we could be here for at least 2 more hours...hmmm that'll be a nice £10-£15 on hospital parking...I swear they delay us on purpose!!
Update:
Well, we finally got out 5.5 hours after we walked in, with a £12 parking ticket.....like you said below Sandy, it really isn't fair, but nevermind....can't do much about it. We're lucky that a lot of the time my sister will drop us in (she lives 5-10 minutes round the corner) and pick us up and that helps out loads.
Anyway, I managed to self inject myself no problems today so I no longer have any worries about doing that again in the future. The needle is really thin and you barely feel it go in, so it sounds much worse than it really is!! There has to be one benefit to the stone I've put on since I started treatment! The belly is perfect for injections....lol!
I got them to give me my total protein leveles too. Now, as I think I've said before, these are not clearly linked to paraprotein levels, but they seem to have been to date for me, and are often used as a cheats method of assessing what the paraprotein (pp) might do. Now when I saw my consultant she was getting me ready for the worst.....and I'm trying to stay that way. Her view was that whilst my pp's may go down a little, that they could just as easily stay the same at the end of this first cycle and that I shouldn't be disappointed if they did. They are at 27 at the moment. Now, (and don't get too excited here), if the total protein, little cheat that it is, was to suggest decreases similar to past experiences, I have a feeling that my pp may go down to under 20!!!! And with that I would be really pleased. REALLY REALLY pleased.
Just to clarify, we want my pp's to be as close to zero as possible by the time I have my transplant. And if possible we want that to happen within the next 4 cycles, so that I don't have to go through any further chemo before the transplant. As you know if you read this a lot, it really takes it out of me, being on the velcade, so if I can get down to zero in 4 cycles, it would be fantastic. If I don't, they may put me on up to another 4 cycles (each cycle is 3 weeks) until I either get to zero, or show a plateau. So we will see, but the perfect scenario in my head, as much as the transplant will be tough, is to get on with it as soon as possible!!
So today has been a long day, but a pretty good day, so long as my thoughts on my pp's are correct. Tomorrow I get my kiddies back who have stayed with the grandparents since Saturday night, and I have to say, I can't wait. I have missed them loads and whilst it has nice to have some peace and quiet, I do feel so blessed to have them both. I may not be saying that by the end of the Easter holidays, but for now......bring them home!!!
Apparently something went funny with my blood so I had to redo them! I have seen the doctor though which is good. She seemed pleased that I've been well enough the last two days to clean our patio slabs and surprised that I've got the peripheral neuropathy already. It looks like my neutrophils are back down at 0.9 which is very low and means I have to self inject again tomorrow ....don't like stabbing myself with a needle but looks a necessity for me nowadays. I don't know my other results yet but will ask for them in a bit!
so at this rate it looks like we could be here for at least 2 more hours...hmmm that'll be a nice £10-£15 on hospital parking...I swear they delay us on purpose!!
Update:
Well, we finally got out 5.5 hours after we walked in, with a £12 parking ticket.....like you said below Sandy, it really isn't fair, but nevermind....can't do much about it. We're lucky that a lot of the time my sister will drop us in (she lives 5-10 minutes round the corner) and pick us up and that helps out loads.
Anyway, I managed to self inject myself no problems today so I no longer have any worries about doing that again in the future. The needle is really thin and you barely feel it go in, so it sounds much worse than it really is!! There has to be one benefit to the stone I've put on since I started treatment! The belly is perfect for injections....lol!
I got them to give me my total protein leveles too. Now, as I think I've said before, these are not clearly linked to paraprotein levels, but they seem to have been to date for me, and are often used as a cheats method of assessing what the paraprotein (pp) might do. Now when I saw my consultant she was getting me ready for the worst.....and I'm trying to stay that way. Her view was that whilst my pp's may go down a little, that they could just as easily stay the same at the end of this first cycle and that I shouldn't be disappointed if they did. They are at 27 at the moment. Now, (and don't get too excited here), if the total protein, little cheat that it is, was to suggest decreases similar to past experiences, I have a feeling that my pp may go down to under 20!!!! And with that I would be really pleased. REALLY REALLY pleased.
Just to clarify, we want my pp's to be as close to zero as possible by the time I have my transplant. And if possible we want that to happen within the next 4 cycles, so that I don't have to go through any further chemo before the transplant. As you know if you read this a lot, it really takes it out of me, being on the velcade, so if I can get down to zero in 4 cycles, it would be fantastic. If I don't, they may put me on up to another 4 cycles (each cycle is 3 weeks) until I either get to zero, or show a plateau. So we will see, but the perfect scenario in my head, as much as the transplant will be tough, is to get on with it as soon as possible!!
So today has been a long day, but a pretty good day, so long as my thoughts on my pp's are correct. Tomorrow I get my kiddies back who have stayed with the grandparents since Saturday night, and I have to say, I can't wait. I have missed them loads and whilst it has nice to have some peace and quiet, I do feel so blessed to have them both. I may not be saying that by the end of the Easter holidays, but for now......bring them home!!!
Wednesday, 6 April 2011
Lifting moods
So it's been a while since I last wrote.
To be totally honest, I've found the last week or so quite tough. Not that I've felt particularly worse, but more because I'm going through a blip where I am so tired from the side effects, and so tired of not feeling my usual active self, that I am just a bit fed up of it all. The good thing is I know it won't last, but it doesn't make it nice while I'm going through it.
I like to think that I've handled this damned diagnosis pretty well since it all kicked off in 2009. Without even trying it has seemed to be fairly natural not to blame other people, wonder 'Why me?' or get cross about the whole thing. I almost feel like sometimes friends and family expect me to be showing those feelings, and with some friends, I think they are disappointed not to see me collapse in a heap in the floor....maybe because that's what they would do.
But this week, I've felt a bit like I'm not quite sure how I face this for my (ok yes, shortened) lifespan! It's wierd. I suppose at the beginning, and once you get over the initial diagnosis and the shock of it all, it almost becomes a 'novelty' thing. Hmmm, should I admit to that one? I certainly felt a little like that while I was training and raising money for my 3 Peaks last year. It felt a bit like being pregnant. But now, that novelty value is well and truly wearing off, and I just wish I could go out without worrying about how I might feel afterwards, whether I will have overdone things for the next day, whether I'm going to get the same old same old questions from people who care. Maybe post transplant, that will happen....for a while at least. I think I might have to use that as the opportunity to cancel MM as a topic of conversation! Maybe if I get remission I can ban it from conversation....hmmm, thinking it's unlikely as that's probably when I'll feel back up to fundraising! Oh well. Maybe I'll feel differently by then.
So, back to now....it's a beautiful sunny day today, after a day of rain yesterday. So I've been in the garden chopping down branches from our neighbours tree (grrrrrrr.....just drops leaves etc all year round!) and have even planted a couple of things! That's probably my lot for today, and I hope I haven't done too much, but I really enjoyed it and it was so warm out there even at 10am that it really lifted my spirits!
One of my lovely best friends is coming over with her gorgeous 5 month old anytime now so that will be nice...time to just catch up and I'll try not to moan too much at her! Hopefully we can sit in the garden and chill out until school pick up :-)
To be totally honest, I've found the last week or so quite tough. Not that I've felt particularly worse, but more because I'm going through a blip where I am so tired from the side effects, and so tired of not feeling my usual active self, that I am just a bit fed up of it all. The good thing is I know it won't last, but it doesn't make it nice while I'm going through it.
I like to think that I've handled this damned diagnosis pretty well since it all kicked off in 2009. Without even trying it has seemed to be fairly natural not to blame other people, wonder 'Why me?' or get cross about the whole thing. I almost feel like sometimes friends and family expect me to be showing those feelings, and with some friends, I think they are disappointed not to see me collapse in a heap in the floor....maybe because that's what they would do.
But this week, I've felt a bit like I'm not quite sure how I face this for my (ok yes, shortened) lifespan! It's wierd. I suppose at the beginning, and once you get over the initial diagnosis and the shock of it all, it almost becomes a 'novelty' thing. Hmmm, should I admit to that one? I certainly felt a little like that while I was training and raising money for my 3 Peaks last year. It felt a bit like being pregnant. But now, that novelty value is well and truly wearing off, and I just wish I could go out without worrying about how I might feel afterwards, whether I will have overdone things for the next day, whether I'm going to get the same old same old questions from people who care. Maybe post transplant, that will happen....for a while at least. I think I might have to use that as the opportunity to cancel MM as a topic of conversation! Maybe if I get remission I can ban it from conversation....hmmm, thinking it's unlikely as that's probably when I'll feel back up to fundraising! Oh well. Maybe I'll feel differently by then.
So, back to now....it's a beautiful sunny day today, after a day of rain yesterday. So I've been in the garden chopping down branches from our neighbours tree (grrrrrrr.....just drops leaves etc all year round!) and have even planted a couple of things! That's probably my lot for today, and I hope I haven't done too much, but I really enjoyed it and it was so warm out there even at 10am that it really lifted my spirits!
One of my lovely best friends is coming over with her gorgeous 5 month old anytime now so that will be nice...time to just catch up and I'll try not to moan too much at her! Hopefully we can sit in the garden and chill out until school pick up :-)
Thursday, 31 March 2011
Feeling SO much better - Day 10
Wow, the difference a few days can make.....and here's hoping I'm not tempting fate by writing this!
Got out walking again today for the first time in a week and I feel so much better for it. Much slower than normal as I was trying to take it easy....Nick is away and I need to be sure not to wipe myself out for the kids. But I just love it.....my iphone and me and the world! Oh and the snail that made me think of myself!
Anyway, I'm back to the Marsden tomorrow for the last of my Velcade injections in this cycle...then I get a week off the lovely journey and hopefully won't be as wiped out as people suggest that you can be. Hopefully I'll be in and out as quickly as last week, but won't feel as rubbish when I get home! At least this time, the inlaws are here to help out till Nick gets back so if I need to rest, I can.......assuming I can let them take over....not so good at that one with them for some reason.
They're staying till Saturday lunch (an early mothering sunday lunch celebration) and then we have till Sunday afternoon just the 4 of us before Nick is off on his travels....again, poor bloke! Still we're nearly at the end of the travelling and hopefully then things will get a little easier on all of us.
Got out walking again today for the first time in a week and I feel so much better for it. Much slower than normal as I was trying to take it easy....Nick is away and I need to be sure not to wipe myself out for the kids. But I just love it.....my iphone and me and the world! Oh and the snail that made me think of myself!
They're staying till Saturday lunch (an early mothering sunday lunch celebration) and then we have till Sunday afternoon just the 4 of us before Nick is off on his travels....again, poor bloke! Still we're nearly at the end of the travelling and hopefully then things will get a little easier on all of us.
Tuesday, 29 March 2011
Expectations - Day 8 VCD
I've read a lot of blogs since I was first diagnosed. And I'm still not quite sure what the point of them is.....despite writing this one. I'm not even quite sure why I write this anymore....whether it is for me, for other people who want to know what is going on without hassling, for people who have been diagnosed and need to hear how it is......
Perhaps it just doesn't matter. I started writing it because I wanted a diary of what I felt and how this cancer was affecting me, but I'm not sure it has quite ended up like that. It is hard to be 100% honest about your feelings when you know that some of the people who read it would find that really difficult. And to be honest, I'm not the most 'eloquent' of writers!!! I've read some really inspiring blogs recently and for a brief moment they made me question whether I should carry on writing this. Just who exactly am I helping!!!
But I'm afraid I am going to carry on with it....after all, if you don't like the content, you can go and read the inspiring blogs and I can write to myself :-)
Anyway, the good news is that after a major blip on Sunday evening and Monday, I feel a lot more positive today. I slept a little better last night.....still waking every 20 minutes or so, but it felt a bit more restful and a little less stressed! Wierdly I did dream all night about the upcoming transplant...ironically linked to our Occupational Health department at work, the family and all sorts of strange things. But I woke up feeling slightly more refreshed and ready to face the world. Good really as Nick has gone off to Italy today till tomorrow night (back and then off on Thursday to Spain!).
Despite Rebecca choosing today to have her blip with life and with Nick going away (bless her), we all got off to school ok and I made the hospital. I was out in about 3 hours and in that time actually managed to dose for an hour or so which was a huge help to the 90 minute drive home. Still shattered now and will be off to bed in the next half hour or so, but I managed and there were no tears....always a positive! Not even the cost of the hospital parking made me cry today!
I am really loathed to listen to much to what other patients experience are with Velcade as I don't want to give myself an excuse to give up on doing stuff and life for the next 3 months....but the more I have heard, the more I think that perhaps it might be a bit of a write-off and that the sooner I give in to that and accept it, the happier I will be with it. Someone wrote to me today and explained what a powerful combination of drugs I was on. They know a lot and said that it was unlikely I'd be able to do a lot whilst on it. And scarily, whilst on revlimid, my drug free week was a great week, it sounds like on Velcade, you are totally wiped out on your drug free week......god knows what that will look like!!! I can't really imagine being more wiped out than I have been at times this week.
So my new plan is to lower my expectations.....hmmm, yeah right! I still want to go for a walk tomorrow, make fish mornay for the kids and a loaf of bread......oh yes and there's a bit of ironing and swimming after school. BUT, somehow, I feel a bit like if I don't manage one or two of those things it won't be because I'm a failure......and if I can stand by that thought, then I've moved on somewhere over this first week of treatment.
Perhaps it just doesn't matter. I started writing it because I wanted a diary of what I felt and how this cancer was affecting me, but I'm not sure it has quite ended up like that. It is hard to be 100% honest about your feelings when you know that some of the people who read it would find that really difficult. And to be honest, I'm not the most 'eloquent' of writers!!! I've read some really inspiring blogs recently and for a brief moment they made me question whether I should carry on writing this. Just who exactly am I helping!!!
But I'm afraid I am going to carry on with it....after all, if you don't like the content, you can go and read the inspiring blogs and I can write to myself :-)
Anyway, the good news is that after a major blip on Sunday evening and Monday, I feel a lot more positive today. I slept a little better last night.....still waking every 20 minutes or so, but it felt a bit more restful and a little less stressed! Wierdly I did dream all night about the upcoming transplant...ironically linked to our Occupational Health department at work, the family and all sorts of strange things. But I woke up feeling slightly more refreshed and ready to face the world. Good really as Nick has gone off to Italy today till tomorrow night (back and then off on Thursday to Spain!).
Despite Rebecca choosing today to have her blip with life and with Nick going away (bless her), we all got off to school ok and I made the hospital. I was out in about 3 hours and in that time actually managed to dose for an hour or so which was a huge help to the 90 minute drive home. Still shattered now and will be off to bed in the next half hour or so, but I managed and there were no tears....always a positive! Not even the cost of the hospital parking made me cry today!
I am really loathed to listen to much to what other patients experience are with Velcade as I don't want to give myself an excuse to give up on doing stuff and life for the next 3 months....but the more I have heard, the more I think that perhaps it might be a bit of a write-off and that the sooner I give in to that and accept it, the happier I will be with it. Someone wrote to me today and explained what a powerful combination of drugs I was on. They know a lot and said that it was unlikely I'd be able to do a lot whilst on it. And scarily, whilst on revlimid, my drug free week was a great week, it sounds like on Velcade, you are totally wiped out on your drug free week......god knows what that will look like!!! I can't really imagine being more wiped out than I have been at times this week.
So my new plan is to lower my expectations.....hmmm, yeah right! I still want to go for a walk tomorrow, make fish mornay for the kids and a loaf of bread......oh yes and there's a bit of ironing and swimming after school. BUT, somehow, I feel a bit like if I don't manage one or two of those things it won't be because I'm a failure......and if I can stand by that thought, then I've moved on somewhere over this first week of treatment.
Sunday, 27 March 2011
Bloody knackered
Got it wrong about today not impacting me!
Managed the day at the christening pretty well I think.....didn't really want anyone to think I was doing anything other than coping!! But got into the car and was shattered and asleep within 20 minutes! And then came home and was asleep for another 2 hours! Just trying to sit with Nick for an hour or so that he doesn't feel totally neglected!
I'm feeling quite frustrated about how the treatment is affecting me even though I know it is still early days here. I have put on nearly a stone since I started on the Revlimid back in November, and only in the last week or so have I felt like I've been making a start on changing this. I've walked 3 times this last week and while I find it a little tiring, it has really invigorated me doing it. But the problem is that by doing that, I have no energy for anything else. How can I do things like that, if it means I struggle to pick up the kids, make their tea and generally get on with normal life.
I feel a bit pulled from pillar to post with it all. I want to be totally selfish and if it was only Nick and I, I probably would be. But it isn't and that is tough. I know there is lots to do like photo albums and scrapbooks that don't have to take a lot of energy...but part of this is about me getting me feeling happy about myself and at the moment I dislike the way I have allowed myself to fall to pot! Stupid I know, and this isn't a bid for comments telling me it doesn't matter - it does to me!
I know I'll get there, and I'm hoping I'll get more used to how this treatment is going to affect me as time goes on. And hopefully with that will come the balance I so desperately want to get to!
Positive thoughts, positive thoughts, positive thoughts!!
Managed the day at the christening pretty well I think.....didn't really want anyone to think I was doing anything other than coping!! But got into the car and was shattered and asleep within 20 minutes! And then came home and was asleep for another 2 hours! Just trying to sit with Nick for an hour or so that he doesn't feel totally neglected!
I'm feeling quite frustrated about how the treatment is affecting me even though I know it is still early days here. I have put on nearly a stone since I started on the Revlimid back in November, and only in the last week or so have I felt like I've been making a start on changing this. I've walked 3 times this last week and while I find it a little tiring, it has really invigorated me doing it. But the problem is that by doing that, I have no energy for anything else. How can I do things like that, if it means I struggle to pick up the kids, make their tea and generally get on with normal life.
I feel a bit pulled from pillar to post with it all. I want to be totally selfish and if it was only Nick and I, I probably would be. But it isn't and that is tough. I know there is lots to do like photo albums and scrapbooks that don't have to take a lot of energy...but part of this is about me getting me feeling happy about myself and at the moment I dislike the way I have allowed myself to fall to pot! Stupid I know, and this isn't a bid for comments telling me it doesn't matter - it does to me!
I know I'll get there, and I'm hoping I'll get more used to how this treatment is going to affect me as time goes on. And hopefully with that will come the balance I so desperately want to get to!
Positive thoughts, positive thoughts, positive thoughts!!
Nearly a week on - day 6 VCD
Well it's been a pretty good start to the first cycle. Tiredness is the main issue as I'm not sleeping brilliantly even with the aid of sleeping tablets. And I'm only taking those on nights of desperation!
My worst night so far was on Friday. I'd been to the Marsden for my second velcade dose and driven home....all good really but by the time I'd got home i was dead to the world! And very very emotional! Lucky my boy was at a friends for tea and our neighbour had got Rebecca. She bought her home, saw the state of me and kept her for tea until nick got home...a real life saver.
Yesterday was better after a slightly better sleep and I even got out working a bit inthe garden. and made bread.
Anyway this morning we've had an early start to go to the christening of one of nicks cousins kids....hopefully won't flake me out totally!
My worst night so far was on Friday. I'd been to the Marsden for my second velcade dose and driven home....all good really but by the time I'd got home i was dead to the world! And very very emotional! Lucky my boy was at a friends for tea and our neighbour had got Rebecca. She bought her home, saw the state of me and kept her for tea until nick got home...a real life saver.
Yesterday was better after a slightly better sleep and I even got out working a bit inthe garden. and made bread.
Anyway this morning we've had an early start to go to the christening of one of nicks cousins kids....hopefully won't flake me out totally!
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