I think I'm missing posting this by a matter of minutes in the end, but HAPPY EASTER to everyone!! What an Easter weekend and I have to say that so far it has been great.
Yesterday I think was my favourite day in a long long time. Just the 4 of us and that was who it was about. We started with a gorgeous picnic in Marlow park in beautiful sunshine. For once the kids had what they wanted to eat for the picnic (scary bow grateful a child then us for a packet of custard creams and a pear!!), played crazy golf, went on a bouncy castle and merry-go-round and played make believe!!
Then it was home to drop homemade eggs round to some of their friends, followed by playing in the sprinkler in the garden! God that bought back some great memories of being a kid and they loved it....esp sam!
Followed it all off with a great BBQ that they devoured and it couldn't have been a nicer day! Truly my happiest day in ages.
Then today we went off to the midlands for a day with the inlays and again a fantastic day. Our kids just love their nanny and granddad very much and their cousin Hugo so Easter egg hunts and playing up there was just fab for them.
I've been bit ropey today....exhausted despite sleeping lots in the day and horrid peripheral neuropathy that feels like my palms,feet and calves are burning the whole time, but somehow even that has seemed bearable when the time has been so nice.
Day on the house tomorrow...some painting and gardening I think...nay e a bit of fun for the kids too.....
Monday 25 April 2011
Thursday 21 April 2011
Summer sunshine
Well I thought that I'd use my time hooked up to my fluids to write an update. Seems a shame to be stuck inside on a drip when it us so sunny outside but hey ho - hopefully it's all for the right reasons. I have to have an hour of fluids everytime I have velcade....something about preventing sickness and dizziness I think they said.
One of my lovely sisters has helped us out today with it being the Easter hols. She came down from London with her kids and has taken the kids to the park while I get my treatment. I'm very much looking forward to catching up with them after and just hope I'm not too shattered as I'm not feeling too hot at the moment and we still have to drive home.
What was good today though was that she dropped me at the hospital which meant that the kids have seen it for the first time. Both had a quick toilet stop (!) but Rebecca also came u to the outpatients ward to say hello to some of the staff! Sam really didn't want to and so he went back to the car with his cousins but it's all just a way of hopefully getting them less worried about what's happening to me. Rebecca was very chuffed as one of the nurses gave her some biscuits....friend for life there!! And hopefully sam might like the idea more next time as it's him that is obviously more scared of the whole hospital thing. But a great start for them both and also means that the transplant won't be their first time of coming here.
Right, going to try to get 30minutes of shut eye now!!
One of my lovely sisters has helped us out today with it being the Easter hols. She came down from London with her kids and has taken the kids to the park while I get my treatment. I'm very much looking forward to catching up with them after and just hope I'm not too shattered as I'm not feeling too hot at the moment and we still have to drive home.
What was good today though was that she dropped me at the hospital which meant that the kids have seen it for the first time. Both had a quick toilet stop (!) but Rebecca also came u to the outpatients ward to say hello to some of the staff! Sam really didn't want to and so he went back to the car with his cousins but it's all just a way of hopefully getting them less worried about what's happening to me. Rebecca was very chuffed as one of the nurses gave her some biscuits....friend for life there!! And hopefully sam might like the idea more next time as it's him that is obviously more scared of the whole hospital thing. But a great start for them both and also means that the transplant won't be their first time of coming here.
Right, going to try to get 30minutes of shut eye now!!
Friday 15 April 2011
Hurrah - some good news
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
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
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 :-)
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