I hope that everyone has had a lovely Christmas, loads of lovely presents and is looking forward to a healthy, and happy 2011!
And despite how worried I was about Christmas, I have to say, it's been a pretty good one all in all. When I first found out I'd have started chemo and be high on drugs on Christmas day, I can't say I thought I was particularly lucky, but now I feel differently. Nothing has changed in terms of side effects etc so I won't bore you with that...how lucky am I? People seem to think I'm weird to say that, but I really think I could have had far worse in terms of how I feel, and what is happening to me so I do feel pretty lucky. One of the blogs I follow, the guy went in for his transplant on Christmas day and was still cheery to the last....now that is inspiration for me!
We had a lovely Christmas day...my favourite present, a beautiful locket from Nick and the kids. All 3 of them had written a little message for me in it for now, but for me to read when I go into hospital...how to make a girl cry by 8am on Christmas morning! It was so gorgeous and I will treasure it.
We've been in the Midlands since then, with Nick's parents and seeing his brother and two of my sisters. Nick had his bday too so all in all it's been pretty manic but lovely. I'm shattered today and am now in bed. So tired that I forgot to take my meds this morning and only realised this evening....not good but hopefully it won't have a major impact! First time for everything, and hopefully the last!!
Off home via my parents and godmother tomorrow....very much looking forward to being back in my own house for a while but will miss the kindness everyone up here has shown (and the help with the kids :-))
Wednesday, 29 December 2010
Tuesday, 21 December 2010
Day 28 - End of Cycle 1 of CRD
So I got down to the Marsden yesterday and gave my blood sample without any hassle (well apart from the 3 times it took them to get the needle in the right vein!). The hope was that by getting down there early this morning, the negative pregnancy test (which I have to have to be allowed the revlimid) would be back nice and early and I'd be able to pick up my prescription early, and either spend some time with my sister, or get home if the snow was closing in....but of course that would be too easy!
So I got there for 9am, had my zometa infusion (which I have to have monthly) and waited. The good news is that my hb is back up to 10.9 which is nearly normal. The thing that initially slowed things down was the fact I've been pretty breathless recently and so they wanted me to have a chest xray to rule out any issues there. That all came back clear :-). Eventually I got to see the doctor and he has just said to keep an eye on the breathlessness and if it gets worse to get back to them and they'll give me a CT scan to check it isn't DVT. I think he was less worried as I had something similar (though not quite as pronounced) after a low hb result around the time I was training for my 3 Peaks Challenge. So hopefully it's nothing and we'll have a hassle free Christmas!!
Anyway, I eventually got the drugs at 1pm and headed back to get my kids from my sister and head home....luckily the roads were pretty clear and easy! I even saw planes going from Heathrow which is a bit of a miracle at the moment.
So I got there for 9am, had my zometa infusion (which I have to have monthly) and waited. The good news is that my hb is back up to 10.9 which is nearly normal. The thing that initially slowed things down was the fact I've been pretty breathless recently and so they wanted me to have a chest xray to rule out any issues there. That all came back clear :-). Eventually I got to see the doctor and he has just said to keep an eye on the breathlessness and if it gets worse to get back to them and they'll give me a CT scan to check it isn't DVT. I think he was less worried as I had something similar (though not quite as pronounced) after a low hb result around the time I was training for my 3 Peaks Challenge. So hopefully it's nothing and we'll have a hassle free Christmas!!
Anyway, I eventually got the drugs at 1pm and headed back to get my kids from my sister and head home....luckily the roads were pretty clear and easy! I even saw planes going from Heathrow which is a bit of a miracle at the moment.
Saturday, 18 December 2010
DAY 25 - CRD - Everything at a standstill
It's been a week since I last wrote and we're currently snowed in! Despite living on the A40 in Bucks which is a fairly main road. We probably could get out.....but with an open fire, plenty of food and a new delivery of wine, I think we'll stick with the idea that we're snowed in!!! lol!
Anyway, things are going really well treatment wise. The cycle that I follow is 21 days of revlimid (with the Cyclophosphomide and the dex interspersed on various days), and then 7 days which is just all of the side drugs that I have to take to stop flu, fungal infections, DVT, etc. And I think those 7 days will be a fantastic relief each cycle as I seem to get my taste back and feel like normal again which is so nice. We went to a wedding yesterday (despite having 2cm of snow during the day and it being -11) and I actually felt like a total human again which was fab.
I'm back at the hospital on Tuesday (weather permitting) to be checked over and given the next cycle's worth of drugs. I'm slightly worried now with the weather, what will happen if I can't get there...the Marsden is an hours drive away and Sutton hasn't got over the snow they had about 2 weeks ago I don't think!! I don't think they'll let my local hospital do the tests etc so it could delay everything which might result in me not being able to stay in the trial....not that they have said that, but it is my concern. I am very happy on it, and feel really lucky so would hate it if they changed that. Anyway, no point worrying until I speak with them on Monday.
We were meant to be seeing father christmas tomorrow with the kids but that has been cancelled too with the weather, so it looks like it'll be another day of christmas decorations and chilling out in the house.
Anyway, things are going really well treatment wise. The cycle that I follow is 21 days of revlimid (with the Cyclophosphomide and the dex interspersed on various days), and then 7 days which is just all of the side drugs that I have to take to stop flu, fungal infections, DVT, etc. And I think those 7 days will be a fantastic relief each cycle as I seem to get my taste back and feel like normal again which is so nice. We went to a wedding yesterday (despite having 2cm of snow during the day and it being -11) and I actually felt like a total human again which was fab.
I'm back at the hospital on Tuesday (weather permitting) to be checked over and given the next cycle's worth of drugs. I'm slightly worried now with the weather, what will happen if I can't get there...the Marsden is an hours drive away and Sutton hasn't got over the snow they had about 2 weeks ago I don't think!! I don't think they'll let my local hospital do the tests etc so it could delay everything which might result in me not being able to stay in the trial....not that they have said that, but it is my concern. I am very happy on it, and feel really lucky so would hate it if they changed that. Anyway, no point worrying until I speak with them on Monday.
We were meant to be seeing father christmas tomorrow with the kids but that has been cancelled too with the weather, so it looks like it'll be another day of christmas decorations and chilling out in the house.
Saturday, 11 December 2010
Day 18 - CRD
I feel so lucky in so many ways. At the start of this process, I would have given anything if someone had told me that tiredness and a bit of nausea was my main problem! And 18 days in, those are my main issues.
It's hard sometimes to stay positive though when I keep on feeling like that. I know I'm really lucky, and I know that I should be so so grateful....so many people have such terrible side effects. But the last two days have been hard and I am totally wiped out at the moment. I have a mouth that tastes like a badger has died in it and whatever I eat tastes awful.....but I can't stop eating because it feels so horrid when I'm not. And to top that, I haven't really slept the last two night. I thought it would be when I was on dexamethasone that I struggled with sleep, but it seems to be much more random than that. It's not that I lie there awake for hours, but more that I wake every hour on the dot and am pretty alert before falling back to sleep. Which has left me in a bit of a state!! Good for nothing come the evenings!
We're still doing stuff.....Nick's brother came down with his wife and little boy today which was lovely...we took all the kids to see Father Christmas at the local farm and they had a ball....I want to keep stuff going for them. It's hard though, as really I just want to curl up in front of the TV at the weekend so that I have some energy in the week!
Anyway, tomorrow will be a family day....the kids want to do their christmas cards and we'll just chill out here I think! Lovely juvely!
It's hard sometimes to stay positive though when I keep on feeling like that. I know I'm really lucky, and I know that I should be so so grateful....so many people have such terrible side effects. But the last two days have been hard and I am totally wiped out at the moment. I have a mouth that tastes like a badger has died in it and whatever I eat tastes awful.....but I can't stop eating because it feels so horrid when I'm not. And to top that, I haven't really slept the last two night. I thought it would be when I was on dexamethasone that I struggled with sleep, but it seems to be much more random than that. It's not that I lie there awake for hours, but more that I wake every hour on the dot and am pretty alert before falling back to sleep. Which has left me in a bit of a state!! Good for nothing come the evenings!
We're still doing stuff.....Nick's brother came down with his wife and little boy today which was lovely...we took all the kids to see Father Christmas at the local farm and they had a ball....I want to keep stuff going for them. It's hard though, as really I just want to curl up in front of the TV at the weekend so that I have some energy in the week!
Wednesday, 8 December 2010
DAY 15 - CRD - Looking good (ish!)
I had my two week check up yesterday.....to check I hadn't dropped dead or blown up into a pumpkin since I started taking the CRD regime!!
It was fairly good news with them not being too concerned about my various small side effects and feeling happy that all was going well. They don't get my paraprotein results until my 4 week check up on the 21st (and even then I won't know that result until after Christmas) but they are able to do a 'cheats' test by looking at my total protein, and it looks like that is already starting to reduce on the chemo drugs so that is good....the idea is that my paraprotein will drop as close to zero as we can get it!
Other than that, the only thing to report is that hb has dropped quite significantly from 11.1 a week ago, to 9.9 yesterday. That is considered quite a steep and rapid drop but given that I haven't had any symptoms to match it, they don't feel it's necessary to do anything at this stage. Apparently I'll have to drop to 8 before they would give me a transfusion, assuming of course that I have no symptoms develop in the meantime.
So I'm feeling pretty positive with the protein results and hoping that we get another goodish couple of weeks in the run up to Christmas....now off to do more shopping and try to get totally organised...but I'm nearly there :-)
Kids are loving the Christmas music, calendars and the tree....it's so nice now they're getting old enough to enjoy it all!
It was fairly good news with them not being too concerned about my various small side effects and feeling happy that all was going well. They don't get my paraprotein results until my 4 week check up on the 21st (and even then I won't know that result until after Christmas) but they are able to do a 'cheats' test by looking at my total protein, and it looks like that is already starting to reduce on the chemo drugs so that is good....the idea is that my paraprotein will drop as close to zero as we can get it!
Other than that, the only thing to report is that hb has dropped quite significantly from 11.1 a week ago, to 9.9 yesterday. That is considered quite a steep and rapid drop but given that I haven't had any symptoms to match it, they don't feel it's necessary to do anything at this stage. Apparently I'll have to drop to 8 before they would give me a transfusion, assuming of course that I have no symptoms develop in the meantime.
So I'm feeling pretty positive with the protein results and hoping that we get another goodish couple of weeks in the run up to Christmas....now off to do more shopping and try to get totally organised...but I'm nearly there :-)
Kids are loving the Christmas music, calendars and the tree....it's so nice now they're getting old enough to enjoy it all!
Saturday, 4 December 2010
DAY 11 - CRD - And another.....
So day 11 and the side effects are starting tot build up, though luckily are not anything major still. Day 8 saw the start of some minor breathlessness for a couple of days, but that has now gone. And for the last 3 days I've had a nausea similar to what I experienced in the early days of pregnancy.....sadly then I had something to look forward to with it!!! I've decided I need to stop being stubborn and start taking the anti-emetics that they gave me.....someone has told me that it will make a big difference.
Today I seem to have come out with a rash all over my body....something that I think is quite common to being on revlimid, but I'll mention it when I go to the hospital for a 2 week check up on Tuesday.
Luckily though, we're still managing to do the normal every day stuff....today we went to see Matilda at Stratford-upon-Avon with Sam's godparents...it was great and a really fun thing to do :-) The kids both loved it which was great, especially since it was Sam's first theatre experience! Tomorrow the plan is to have a chilled out 'creative' day getting ready for Christmas.....now to some that wouldn't be a big deal, but for us, it is....I HATE creative stuff, but love the idea of the kids doing it.....so we'll see what we can come up with....last year it was father christmases made out of toilet rolls.....hmmm, they definitely had more to do with toilets than father christmas!!!!
Anyway, 4 dex days starting tomorrow, so we'll see how that all goes!
Today I seem to have come out with a rash all over my body....something that I think is quite common to being on revlimid, but I'll mention it when I go to the hospital for a 2 week check up on Tuesday.
Luckily though, we're still managing to do the normal every day stuff....today we went to see Matilda at Stratford-upon-Avon with Sam's godparents...it was great and a really fun thing to do :-) The kids both loved it which was great, especially since it was Sam's first theatre experience! Tomorrow the plan is to have a chilled out 'creative' day getting ready for Christmas.....now to some that wouldn't be a big deal, but for us, it is....I HATE creative stuff, but love the idea of the kids doing it.....so we'll see what we can come up with....last year it was father christmases made out of toilet rolls.....hmmm, they definitely had more to do with toilets than father christmas!!!!
Anyway, 4 dex days starting tomorrow, so we'll see how that all goes!
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