Following yesterday's down day, I'm feeling a little more perky today. The kids help no end....you just can't sit around moping with them and that is so good for me at times as I think I would otherwise!!
Yesterday was so hard though. I didn't seem to be able to stop crying all day. And then interspersed with that would be the thought of throwing a glass across the room!!! Nick asked if I could make sure he wasn't around if I did that! It all just seemed so unfair and so wrong. Why had I gone through 4 months of tiredness, sickness, and feeling rubbish to get this sort of result. I just felt exhausted and like I didn't quite know how to keep going with it all. Silly really. My lovely sister sent me a bouquet of flowers all the way from Beijing (well I'm thinking it was probably from here somewhere, but you know what I mean!) and even those made me burst into tears.
But today has been a little better. I cancelled my plans for the day and the kids and I have just been having a nice day doing jigsaws, playing games and reading. I'm not quite ready to be talking about it all with people at the moment, so it is so nice to just be with people who don't get it...bless the little lovelies!!!
Nick and I wrote to the Marsden last night to see if they could give us an indication of what they thought of the figures. Funnily, this morning, I got a copy of the letter that they had sent my GP after last weeks appointment, and that made me realise even more that it was likely they'd pull me off the revlimid. By 10am this morning, I'd had a response from them saying that they agreed that it looked like I had only achieved a minimum response to the Revlimid and that I would probably be put through to the next part of the trial with the randomisation to velcade/ transplant. They have arranged an appointment to see me next Tuesday which is great. They also acknowledged my concerns at going straight to transplant at this stage and that was something that was worrying me as I thought they may bully me into it. Hopefully if that is what I get chosen to do, they will help me with the right decision as I would imagine I'd have to come off the Myeloma XI trial.
I was so impressed that they came back to me so fast. It makes you feel like you are vaguely important and that it isn't all about people through the door. So off we go again next week. Here's hoping Nick's work are ok about all the time he takes off to come with me. I'm a bit nervous about that, but he really wants to be with me for the appointments now (understandable!) so hopefully his work will be ok with him.
So, next step could well be velcade for me....I wonder what that will be like....arrgghh....must stop getting ahead of myself!
Tuesday, 22 February 2011
Monday, 21 February 2011
Cycle 4: Day 6 - Where is it all going?
God I'm feeling miserable today. No apologies. So sorry if you're looking here for any inspiration or positivity!!!
I called up the hospital to see whether they had my paraprotein results back in, and sadly they did. They've gone up from 27 to 28. Now I know this is only a rise of 1, and I know lots of people will tell me it could be a blip, or blah, blah, blah, but having talked to the consultant last week, I am pretty convinced that she will see this as a fairly strong indication that I have stopped responding to the Revlimid. Gutted to say the least.
It's been a weird week anyway since I went in on the 15th. I almost feel like I knew this was coming, but it hasn't made it any easier.
So now I'm not quite sure where I stand with it all, especially being on the trial. I believe that I will be classed as having had a partial response as overall I've gone from 50 to 28. I think that means that now, I will be randomised to either go onto Velcade for a while, or to go straight to transplant. Now I need to do some research, but my understanding is that if you have a transplant without being properly in remission (i.e. without my paraprotein and bone marrow having reduced enough) that I wouldn't get as long a response from that transplant. So I can't see myself staying on the trial if I got picked for that option. Every month counts so much to me with Nick and the kids, and I can't even contemplate shortening that for the sake of a trial.
I think the hard thing today is not knowing where we are going, and how long it will be before I do know. My nurse specialist is on half term this week so there is no-one to ask what happens now? I don't know if they'll keep me on the CRD until the end of this cycle, suggest I go and see them early and change the drugs, or what. So I think Nick and I will sit down tonight, talk it through and maybe draft up an email with all of our questions. I'm not sure I can wait for 3 weeks with this hanging over my head....not happily anyway.
It's strange really. When this all kicked off, I think I just believed that being young and healthy, that I would automatically respond to the Revlimid and that all would go well and that it would all be over by the summer. I never really thought of myself not responding. Goes to show that you can't take anything for granted.
Damn Myeloma....I hate it.
I called up the hospital to see whether they had my paraprotein results back in, and sadly they did. They've gone up from 27 to 28. Now I know this is only a rise of 1, and I know lots of people will tell me it could be a blip, or blah, blah, blah, but having talked to the consultant last week, I am pretty convinced that she will see this as a fairly strong indication that I have stopped responding to the Revlimid. Gutted to say the least.
It's been a weird week anyway since I went in on the 15th. I almost feel like I knew this was coming, but it hasn't made it any easier.
So now I'm not quite sure where I stand with it all, especially being on the trial. I believe that I will be classed as having had a partial response as overall I've gone from 50 to 28. I think that means that now, I will be randomised to either go onto Velcade for a while, or to go straight to transplant. Now I need to do some research, but my understanding is that if you have a transplant without being properly in remission (i.e. without my paraprotein and bone marrow having reduced enough) that I wouldn't get as long a response from that transplant. So I can't see myself staying on the trial if I got picked for that option. Every month counts so much to me with Nick and the kids, and I can't even contemplate shortening that for the sake of a trial.
I think the hard thing today is not knowing where we are going, and how long it will be before I do know. My nurse specialist is on half term this week so there is no-one to ask what happens now? I don't know if they'll keep me on the CRD until the end of this cycle, suggest I go and see them early and change the drugs, or what. So I think Nick and I will sit down tonight, talk it through and maybe draft up an email with all of our questions. I'm not sure I can wait for 3 weeks with this hanging over my head....not happily anyway.
It's strange really. When this all kicked off, I think I just believed that being young and healthy, that I would automatically respond to the Revlimid and that all would go well and that it would all be over by the summer. I never really thought of myself not responding. Goes to show that you can't take anything for granted.
Damn Myeloma....I hate it.
Tuesday, 15 February 2011
Bring on Cycle 4 - CRD
So today was my latest appointment at the Marsden.
It's been a bit of a strange one as I haven't really come out of it much the wiser. Everything is ok and they don't seem to be worried about any of my figures or anything....didn't even ask to do my blood pressure etc this time which is unusual. Normally how it works is that they have all my normal figures (including my total protein) but I have to wait a week for my paraprotein result which is the key one we're following at the moment.
Today, they had all my normal figures APART from the protein. Now this just seems so unfair....I mean....I'd spent all week working on the premise I could use it to cheat and guess where my paraprotein was going to come out. And now I'm actually going to have to wait.....It's Not Fair as my daughter would say! And what is worse is that my nurse specialist is on half term next week so where I can normally get her to email it through fairly promptly, I bet it isn't so easy to get it without her there.
So, what have I learnt today. Well, it looks likely that unless there is an absolute miracle this time (and next), that I will at least be going on to have one more cycle of chemo with the Revlimid. At the same time they see me next month, they will do the dreaded Bone Marrow Biopsy....oh how I can't wait for someone to stick that huge needle in my back!!! However, this will only happen if my paraprotein is still dropping.
If my paraprotein has only dropped by one or two this month, they will probably deem me as not responding to treatment (or as having had a partial response) in which case, they will take me off the Revlimid and do a randomisation to see whether (on the trial) I either still go straight to transplant, or whether I have to start on a drug called Velcade. It is unlikely in these circumstances that they would put me through anymore on Revlimid. I'm not sure which would be the worst deal on this, as to go straight to tranpslant without being in full remission, in some fields, would suggest I'll get less time in remission from the transplant.....and that isn't really something I even want to consider. BUT, to have revlimid will require me to go into hospital two to four times a week and obviously with 2 young kiddies and a husband in a new job, that won't be easy to juggle! And god only knows what the side effects will be of that.
However, that isn't the only option, if my paraprotein drops by around 8-10 this time, they might just get me to go through another round or two on the CRD (revlimid treatment). That would have the downside of the transplant not being till the summer but the benefit of staying with something I know and that I can take at home.
Confused??? I am!!!
So first bit of real news will be next week when I get the paraprotein result and spend the next 3 weeks worrying about what it will mean for me!!! And then I'll have to wait until the next appointment to see what the reality is.
We also had a chat with them about being on Revlimid. There is lots in the press at the moment about the drug and some of the trials that have currently been done. The trials are where it is used as Maintenance therapy (where at present I have it as Induction therapy) and there is some suggestion that it may have led to a higher incidence of secondary cancers where people have been left on it for 2+years. We wanted to talk to them about it and I have to say, they were great. They didn't treat us like we were mad to be interested in what it meant, but answered all our questions and sort of said what we'd thought which is that it is still really early days and there is lots more to be questioned before they know the reality of it all.
At the end of the day all of us with MM will have to make decisions as we go through. Revlimid is considered a wonder drug in many ways, and if it allows me to have more years disease free with my children, perhaps it would be worth secondaries. Though I am conscious that I am unlikely to say that at the time. But who knows, without it, I possibly wouldn't get so many years with them and that is too sad to come off it for something that isn't truly known. I think at the moment lots of the consultants believe that the benefits outweigh the issues.
It's so hard with MM....it rarely leaves your head, although I've got better with that as time has gone on. But it is always there making you consider things in a way you never did before. Recently I've been thinking about the kids lots. I feel so sad that they may not have me around as they grow up and go through their most vunerable years as teenagers. Ok, before you say it, maybe I'll be lucky if I miss that one (!) and maybe it will be Nick's penance (lol!) but as awful a period as I am sure it is for parents, I will be so grateful if I get to see it through till they leave home. Anyway, not sure why I'm writing about this now apart from it has recently snuck back into my head after months of not really thinking about it. And that's what this blog is meant to be about after all....my feelings and thoughts.
Oh yes, got flowers today....thought they might possibly be from nick....they were beautiful. They were from John Lewis apologising for our dishwasher escapades!!!! Better flowers from them than nothing from anyone :-)
It's been a bit of a strange one as I haven't really come out of it much the wiser. Everything is ok and they don't seem to be worried about any of my figures or anything....didn't even ask to do my blood pressure etc this time which is unusual. Normally how it works is that they have all my normal figures (including my total protein) but I have to wait a week for my paraprotein result which is the key one we're following at the moment.
Today, they had all my normal figures APART from the protein. Now this just seems so unfair....I mean....I'd spent all week working on the premise I could use it to cheat and guess where my paraprotein was going to come out. And now I'm actually going to have to wait.....It's Not Fair as my daughter would say! And what is worse is that my nurse specialist is on half term next week so where I can normally get her to email it through fairly promptly, I bet it isn't so easy to get it without her there.
So, what have I learnt today. Well, it looks likely that unless there is an absolute miracle this time (and next), that I will at least be going on to have one more cycle of chemo with the Revlimid. At the same time they see me next month, they will do the dreaded Bone Marrow Biopsy....oh how I can't wait for someone to stick that huge needle in my back!!! However, this will only happen if my paraprotein is still dropping.
If my paraprotein has only dropped by one or two this month, they will probably deem me as not responding to treatment (or as having had a partial response) in which case, they will take me off the Revlimid and do a randomisation to see whether (on the trial) I either still go straight to transplant, or whether I have to start on a drug called Velcade. It is unlikely in these circumstances that they would put me through anymore on Revlimid. I'm not sure which would be the worst deal on this, as to go straight to tranpslant without being in full remission, in some fields, would suggest I'll get less time in remission from the transplant.....and that isn't really something I even want to consider. BUT, to have revlimid will require me to go into hospital two to four times a week and obviously with 2 young kiddies and a husband in a new job, that won't be easy to juggle! And god only knows what the side effects will be of that.
However, that isn't the only option, if my paraprotein drops by around 8-10 this time, they might just get me to go through another round or two on the CRD (revlimid treatment). That would have the downside of the transplant not being till the summer but the benefit of staying with something I know and that I can take at home.
Confused??? I am!!!
So first bit of real news will be next week when I get the paraprotein result and spend the next 3 weeks worrying about what it will mean for me!!! And then I'll have to wait until the next appointment to see what the reality is.
We also had a chat with them about being on Revlimid. There is lots in the press at the moment about the drug and some of the trials that have currently been done. The trials are where it is used as Maintenance therapy (where at present I have it as Induction therapy) and there is some suggestion that it may have led to a higher incidence of secondary cancers where people have been left on it for 2+years. We wanted to talk to them about it and I have to say, they were great. They didn't treat us like we were mad to be interested in what it meant, but answered all our questions and sort of said what we'd thought which is that it is still really early days and there is lots more to be questioned before they know the reality of it all.
At the end of the day all of us with MM will have to make decisions as we go through. Revlimid is considered a wonder drug in many ways, and if it allows me to have more years disease free with my children, perhaps it would be worth secondaries. Though I am conscious that I am unlikely to say that at the time. But who knows, without it, I possibly wouldn't get so many years with them and that is too sad to come off it for something that isn't truly known. I think at the moment lots of the consultants believe that the benefits outweigh the issues.
It's so hard with MM....it rarely leaves your head, although I've got better with that as time has gone on. But it is always there making you consider things in a way you never did before. Recently I've been thinking about the kids lots. I feel so sad that they may not have me around as they grow up and go through their most vunerable years as teenagers. Ok, before you say it, maybe I'll be lucky if I miss that one (!) and maybe it will be Nick's penance (lol!) but as awful a period as I am sure it is for parents, I will be so grateful if I get to see it through till they leave home. Anyway, not sure why I'm writing about this now apart from it has recently snuck back into my head after months of not really thinking about it. And that's what this blog is meant to be about after all....my feelings and thoughts.
Oh yes, got flowers today....thought they might possibly be from nick....they were beautiful. They were from John Lewis apologising for our dishwasher escapades!!!! Better flowers from them than nothing from anyone :-)
Thursday, 10 February 2011
Cycle 3, Day 23
Ok well I promised a more upbeat entry this time.....and I might just fail!!! Although I will try to cheer it up as I go along.
It's been a tough week or so since I last wrote. For me anyway. I know that in comparison to what lots of other Myeloma patients go through, what I have to deal with isn't major, but I only know what I know. And I've found it hard the last week.
I've suffered from the most awful taste in my mouth for about the last 10 days....it has only just gone since I stopped the Revlimid on Tuesday. I've had a horrid taste on and off over the 3 cycles but this was something else. It sort of tasted like when you get dandelion juice from the stems on your fingers and then touch your mouth. Sort of bitter and horrid. It has just really got me down as it has made me eat even more than before trying to get rid of the taste, and of course that has had the worst effect of making me feel pretty low about the weight I've put on. Along with that, I've been remarkably exhausted and not really had the energy to do anything except get the kids to school and do my paid work. By the evenings, I've been banjaxed!
But, on the positive side, I have come out of my low and decided yesterday that I needed to stop moping around about it and start doing something. It was helped by the fact that I stopped feeling so tired and awful, but I got the Wii Fit out of the box that had stayed unopen since I got it for Christmas and set that up. I was also going to go walking today for one of the first times since my 3 Peaks, but unfortunately I heard the rain start at 5am this morning and it didn't stop all day! And it's not the best way to start motivating yourself....but I promise I'll do it next week if the weather gets a little less depressing. But today I started doing the step on the Wii, a bit of running and some hula hooping (I swear that no-one else will ever see that hip movement or I'll be the laughing stock of West Wycombe!).
And on top of that, I finally made bread for the first time, thanks to my sister's encouragement. So homemade bread it is from now on....the breadmaker is going to the charity shop now!
I was going to post about our nightmare with John Lewis and our dishwasher, but that is pretty boring (not that the rest hasn't been) and so I'll leave it. I'm not quite so cross with them now that they're refunding 1/3 of the cost of it and we're hoping they'll donate it to Myeloma UK - so perhaps blogging about the experience wouldn't be too fair.
Right, off to bed now with some sleeping tablets. Will leave Nick watching My Gypsy Wedding and go to bed now :-)
It's been a tough week or so since I last wrote. For me anyway. I know that in comparison to what lots of other Myeloma patients go through, what I have to deal with isn't major, but I only know what I know. And I've found it hard the last week.
I've suffered from the most awful taste in my mouth for about the last 10 days....it has only just gone since I stopped the Revlimid on Tuesday. I've had a horrid taste on and off over the 3 cycles but this was something else. It sort of tasted like when you get dandelion juice from the stems on your fingers and then touch your mouth. Sort of bitter and horrid. It has just really got me down as it has made me eat even more than before trying to get rid of the taste, and of course that has had the worst effect of making me feel pretty low about the weight I've put on. Along with that, I've been remarkably exhausted and not really had the energy to do anything except get the kids to school and do my paid work. By the evenings, I've been banjaxed!
But, on the positive side, I have come out of my low and decided yesterday that I needed to stop moping around about it and start doing something. It was helped by the fact that I stopped feeling so tired and awful, but I got the Wii Fit out of the box that had stayed unopen since I got it for Christmas and set that up. I was also going to go walking today for one of the first times since my 3 Peaks, but unfortunately I heard the rain start at 5am this morning and it didn't stop all day! And it's not the best way to start motivating yourself....but I promise I'll do it next week if the weather gets a little less depressing. But today I started doing the step on the Wii, a bit of running and some hula hooping (I swear that no-one else will ever see that hip movement or I'll be the laughing stock of West Wycombe!).
And on top of that, I finally made bread for the first time, thanks to my sister's encouragement. So homemade bread it is from now on....the breadmaker is going to the charity shop now!
I was going to post about our nightmare with John Lewis and our dishwasher, but that is pretty boring (not that the rest hasn't been) and so I'll leave it. I'm not quite so cross with them now that they're refunding 1/3 of the cost of it and we're hoping they'll donate it to Myeloma UK - so perhaps blogging about the experience wouldn't be too fair.
Right, off to bed now with some sleeping tablets. Will leave Nick watching My Gypsy Wedding and go to bed now :-)
Wednesday, 26 January 2011
BLIP? Cycle 3 - Day 8
Blip time.....well for my mindset anyway!
I got my paraprotein results yesterday (my bday too!) and they have come down but have only come down to 27. I don't know why, but despite the doctor saying they probably wouldn't keep coming down so fast, I had really banked on them coming down a bit more than they did. It was a bit of a downer hearing that they hadn't.
I try so hard on here and in general to be positive about stuff, but found myself getting a bit low yesterday. I suppose I'm a bit scared of what might happen. I feel like I'm dealing with the chemo quite well so far, so in my head, I'd felt that I could cope with the next couple of months and the transplant....but if it doesn't work so well (and I know I'm getting ahead of myself here!), and I have to go onto Velcade, I just don't know how that will affect me, the kids etc. Nick told me off for trying to second guess it all yesterday. He's right too (I so so hate admitting that!!). Really I just need to take a chill pill, wait till the end of my 4th cycle and see what they say. But it is not me to do that...I want to plan, I want to know when I'll be in hospital, I want to know if we can book a holiday, I want to know what childcare I need to sort!!!
People on the Under 50 site have been great though...a couple of people have mentioned that sometimes a quick remission, can lead to a quick relapse, and God knows I don't want that. Also, (and I may be clutching at straws here!), my paraprotein was pretty high to start with, but with a relatively low figure for my bone marrow....so it could be that I don't need it to go so low for them to give me a transplant. And I suppose the other thing to think about is that perhaps every month I don't have to have the transplant is just another month....another month with no risks, another month towards a 'relatively' healthy lifestyle, and another month towards new treatments being found......but please, no-one else is allowed to say that to me!!! Only I'm allowed to talk about the possible cures for the future!
I'm dribbling on a bit today...sorry....bit tired as I've worked all morning. Think it might be time for a cuppa before the school run and swimming!!!
Will try to perk up for next time :-)
I got my paraprotein results yesterday (my bday too!) and they have come down but have only come down to 27. I don't know why, but despite the doctor saying they probably wouldn't keep coming down so fast, I had really banked on them coming down a bit more than they did. It was a bit of a downer hearing that they hadn't.
I try so hard on here and in general to be positive about stuff, but found myself getting a bit low yesterday. I suppose I'm a bit scared of what might happen. I feel like I'm dealing with the chemo quite well so far, so in my head, I'd felt that I could cope with the next couple of months and the transplant....but if it doesn't work so well (and I know I'm getting ahead of myself here!), and I have to go onto Velcade, I just don't know how that will affect me, the kids etc. Nick told me off for trying to second guess it all yesterday. He's right too (I so so hate admitting that!!). Really I just need to take a chill pill, wait till the end of my 4th cycle and see what they say. But it is not me to do that...I want to plan, I want to know when I'll be in hospital, I want to know if we can book a holiday, I want to know what childcare I need to sort!!!
People on the Under 50 site have been great though...a couple of people have mentioned that sometimes a quick remission, can lead to a quick relapse, and God knows I don't want that. Also, (and I may be clutching at straws here!), my paraprotein was pretty high to start with, but with a relatively low figure for my bone marrow....so it could be that I don't need it to go so low for them to give me a transplant. And I suppose the other thing to think about is that perhaps every month I don't have to have the transplant is just another month....another month with no risks, another month towards a 'relatively' healthy lifestyle, and another month towards new treatments being found......but please, no-one else is allowed to say that to me!!! Only I'm allowed to talk about the possible cures for the future!
I'm dribbling on a bit today...sorry....bit tired as I've worked all morning. Think it might be time for a cuppa before the school run and swimming!!!
Will try to perk up for next time :-)
Monday, 24 January 2011
Cycle 3, Day 6
Firstly an apology to anyone who has been waiting to hear how my last appointment went.....I'm not quite sure where the last week has gone, but I just don't seem to have had 5 minutes to do anything. Still, that has to be a good thing, that I'm not moping around feeling sorry for myself!!
I don't have huge news on my paraprotein as I'm still waiting for that to come back to me (hopefully today or tomorrow!) but all in all things are going pretty well. They were really pleased with how my first cycle went, and how I responded to that so that's good news. My symptoms and side effects haven't changed much since then and, if anything, I seem to be better with no bruising and less breathlessness, so it's all good!
I did have a long chat with them about how things would work from here on though, in terms of how decisions would be made. It is all a little complicated but I thought I'd spell it out for those of you who have asked about it.
Basically, nothing will be decided for definite until the end of my 4th cycle of chemotherapy. This finishes in mid March. If my paraprotein has reduced significantly by then (I think to well below 10), they will do a further bone marrow biopsy to check that my actual bone marrow has improved. If the abnormalities in that have reduced to less than around 10%, the likelihood is that they would go ahead with a SCT. If this happened, I would spend the following 2 weeks having chemo, self-injecting growth hormomes to stimulate my stem cells and then harvesting my stem cells. After this, I'd probably get a couple of weeks to chill out a bit (and maybe go on holiday with the family) before I went into hospital for my 2-3 week stint!! If everything happens as smoothly as it could do, I could be looking at a transplant at the end of April/ beginning of May.
However, all of this can go up in the air at any stage, as if my paraprotein stops responding, or if my bone marrow doesn't improve as fast, or if I don't produce as many stem cells are required, everything will get postponed! I could have to do extra cycles of chemo, or retry the harvesting process using a different type of chemo etc.
I think the uncertainty is always the hardest bit of all of this....especially for a control freak like me. I like to plan and I'm not able to do that with this! I'm getting ever so slightly nervous now that we could be close...after all, it's all happening this year now ...up till now I've been thinking in terms of 'next year'. The good thing though is that I'm in contact with a few people who are going through transplants and who have been able to give me such a positive story....that is such a help.
Work still is the thing that is most in the air for me, though they are being quite supportive at the moment which is great. I had really thought about giving it all up by the end of this month, but I'm not sure I will now...the money helps no end and I'm still hanging out for some sort of contract that might help me in terms of covering sick pay when I have my transplant. I'm a bit torn though, because part of me is shattered and would like to just take some time out to get straight at home and with the kids. How do people make the right decisions with the whole work-life balance...it is so hard!
In the meantime, I'm doing loads of playdates for the kids....building up those favours so that I won't feel so bad when I need other people to help me in the months to come!! Shattering though!
Will update once I get those paraprotein results.....keep your fingers crossed for a similar response to last time!!!
I don't have huge news on my paraprotein as I'm still waiting for that to come back to me (hopefully today or tomorrow!) but all in all things are going pretty well. They were really pleased with how my first cycle went, and how I responded to that so that's good news. My symptoms and side effects haven't changed much since then and, if anything, I seem to be better with no bruising and less breathlessness, so it's all good!
I did have a long chat with them about how things would work from here on though, in terms of how decisions would be made. It is all a little complicated but I thought I'd spell it out for those of you who have asked about it.
Basically, nothing will be decided for definite until the end of my 4th cycle of chemotherapy. This finishes in mid March. If my paraprotein has reduced significantly by then (I think to well below 10), they will do a further bone marrow biopsy to check that my actual bone marrow has improved. If the abnormalities in that have reduced to less than around 10%, the likelihood is that they would go ahead with a SCT. If this happened, I would spend the following 2 weeks having chemo, self-injecting growth hormomes to stimulate my stem cells and then harvesting my stem cells. After this, I'd probably get a couple of weeks to chill out a bit (and maybe go on holiday with the family) before I went into hospital for my 2-3 week stint!! If everything happens as smoothly as it could do, I could be looking at a transplant at the end of April/ beginning of May.
However, all of this can go up in the air at any stage, as if my paraprotein stops responding, or if my bone marrow doesn't improve as fast, or if I don't produce as many stem cells are required, everything will get postponed! I could have to do extra cycles of chemo, or retry the harvesting process using a different type of chemo etc.
I think the uncertainty is always the hardest bit of all of this....especially for a control freak like me. I like to plan and I'm not able to do that with this! I'm getting ever so slightly nervous now that we could be close...after all, it's all happening this year now ...up till now I've been thinking in terms of 'next year'. The good thing though is that I'm in contact with a few people who are going through transplants and who have been able to give me such a positive story....that is such a help.
Work still is the thing that is most in the air for me, though they are being quite supportive at the moment which is great. I had really thought about giving it all up by the end of this month, but I'm not sure I will now...the money helps no end and I'm still hanging out for some sort of contract that might help me in terms of covering sick pay when I have my transplant. I'm a bit torn though, because part of me is shattered and would like to just take some time out to get straight at home and with the kids. How do people make the right decisions with the whole work-life balance...it is so hard!
In the meantime, I'm doing loads of playdates for the kids....building up those favours so that I won't feel so bad when I need other people to help me in the months to come!! Shattering though!
Will update once I get those paraprotein results.....keep your fingers crossed for a similar response to last time!!!
Tuesday, 11 January 2011
Looking good so far: Cycle 2 - Day 21
It's been so long since I wrote....so much for keeping a regular diary!! So for some reason, I've chosen a day when I have my sister here, and 2 kids at home sick to update the blog!! Hmmm, rational....not with me!
So what's happened since December? It seems like ages ago. New Year. Well, I can't say I ever really liked New Years Eve....so much pressure to go out, drink lots, and HAVE FUN. Not that I don't like having fun of course, but the idea that you have to go out that evening or you're a bah humbug really gets me down. The last few years, having kids, Nick and I have gone against the pattern, and have just stayed in, cooked a nice meal and talked about the future.
Funnily, it didn't really appeal this year. We went to a friends house, but were home before midnight....I didn't really want to be with other people when that clock ticked over. Nick and I didn't even say HNY to each other....it's not really a year that oozes with happiness...more potential of what might happen after my transplant. It's going to be tough but hopefully will be offering a more positive future. I can't quite imagine what things are going to look like in 2 months time...it's all a bit scary to think of it in too much detail....I think we'll do that once we know what the date is for the actual transplant.
It was nice after New Year to just have a few days the four of us....no visitors for once which is really unlike us, but was actually really nice. We just straightened up the house, played games and had some quality time as a family which was great.
After New Year I wrote to the hospital to find out what my December paraprotein result was. That is the main result that they follow to see whether the chemotherapy is working or not. I got the result at the end of last week, and the great news is that it has dropped from 45 to 32....that is the level it was when I was first diagnosed in July 09. So, it is going in the right direction, and hopefully it will continue that way over the next month....or 3! I belive, and will check this at my next appointment on the 18th, that they are looking for it to go as close to 0 as possible and if that happens, they would be hoping to do the Stem Cell Transplant (SCT) soon after I finish the chemo cycles (probably April/May).
In terms of side effects etc, I'm still doing pretty well in the grand scheme of things. The main difficulties I seem to suffer from, are tiredness, an inability to sleep and a horrid taste in my mouth (similar to the taste you have once you have had a filling at the dentist!). I've finally clicked that the anti emetics do help the taste a little, but sadly not enough to stop me stuffing my face full of food to try to get rid of the taste! So if anyone out there has any tips on how to get rid of the taste/sickness without piling on pounds, I'd love to hear them!!!
I'm still working around 10 hours a week but am finding that harder by the week. I seem to have more time where I don't sleep and that makes me a bit shaky and a bit less focused. Sadly I don't get sick pay so if I don't work I don't get paid.....so I'm trying to keep going for as long as possible before I stop. I'm also talking to my company to see if there is anyway that they might be able to help me through the treatment period, but I'm not holding out much hope there. 13 years with one company perhaps doesn't mean that much after all!!
Right, I'd better go and stop neglecting my children now.....will try to update more regularly!!
So what's happened since December? It seems like ages ago. New Year. Well, I can't say I ever really liked New Years Eve....so much pressure to go out, drink lots, and HAVE FUN. Not that I don't like having fun of course, but the idea that you have to go out that evening or you're a bah humbug really gets me down. The last few years, having kids, Nick and I have gone against the pattern, and have just stayed in, cooked a nice meal and talked about the future.
Funnily, it didn't really appeal this year. We went to a friends house, but were home before midnight....I didn't really want to be with other people when that clock ticked over. Nick and I didn't even say HNY to each other....it's not really a year that oozes with happiness...more potential of what might happen after my transplant. It's going to be tough but hopefully will be offering a more positive future. I can't quite imagine what things are going to look like in 2 months time...it's all a bit scary to think of it in too much detail....I think we'll do that once we know what the date is for the actual transplant.
It was nice after New Year to just have a few days the four of us....no visitors for once which is really unlike us, but was actually really nice. We just straightened up the house, played games and had some quality time as a family which was great.
After New Year I wrote to the hospital to find out what my December paraprotein result was. That is the main result that they follow to see whether the chemotherapy is working or not. I got the result at the end of last week, and the great news is that it has dropped from 45 to 32....that is the level it was when I was first diagnosed in July 09. So, it is going in the right direction, and hopefully it will continue that way over the next month....or 3! I belive, and will check this at my next appointment on the 18th, that they are looking for it to go as close to 0 as possible and if that happens, they would be hoping to do the Stem Cell Transplant (SCT) soon after I finish the chemo cycles (probably April/May).
In terms of side effects etc, I'm still doing pretty well in the grand scheme of things. The main difficulties I seem to suffer from, are tiredness, an inability to sleep and a horrid taste in my mouth (similar to the taste you have once you have had a filling at the dentist!). I've finally clicked that the anti emetics do help the taste a little, but sadly not enough to stop me stuffing my face full of food to try to get rid of the taste! So if anyone out there has any tips on how to get rid of the taste/sickness without piling on pounds, I'd love to hear them!!!
I'm still working around 10 hours a week but am finding that harder by the week. I seem to have more time where I don't sleep and that makes me a bit shaky and a bit less focused. Sadly I don't get sick pay so if I don't work I don't get paid.....so I'm trying to keep going for as long as possible before I stop. I'm also talking to my company to see if there is anyway that they might be able to help me through the treatment period, but I'm not holding out much hope there. 13 years with one company perhaps doesn't mean that much after all!!
Right, I'd better go and stop neglecting my children now.....will try to update more regularly!!
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