Hmmm...got a lie in for the second day on the trot....thanks Nick!
The antibiotics have kicked in and I finally feel like I'm in the land of the living again (might still not look it, but you can't have everything!). I'm still a bit bunged up and a bit coughy but nowhere near what I was last week when I couldn't go 10 minutes without coughing madly. Now it will just be the waiting game to see whether or not it has affected my readings. Fingers crossed, no as otherwise I'll have to start thinking about how I limit contact with people who are ill. And that's not going to be easy with 2 kids! Anyway, might be getting ahead of myself here.
It's been nice to just have a chilled out day with Nick and the kids today....no-one to cook for, no-one to look after, just us :) I keep saying we should do more of it.....and then book up the diary....currently booked well into May...mad!
I had a look on the MMUK site yesterday....another story of someone who has lost their battle with Myeloma. I hang on to the fact that I don't have symptoms yet, but find it really sad everytime it happens. It makes me think of my family and how they'd feel. The site is fantastic though and the support you get from people on it is amazing....it's amazing how there are people that I have really developed an 'internet' relationship with via the site. I never quite understood internet dating, but have started to a bit better recently!!!
Fundraising is now up to nearly £1900 which is so great...I am over the moon. I'm sure that the last £1000 will be the hardest but I still have lots of people that I do think will sponsor at some point. I've just had an email back from my gym saying that they'll provide a trainer for me to set up a specific training programme for the walk and that they'll also look at doing a collection at the club. I am so chuffed by their response...after all I only started there a couple of months ago!
Right off to have a nice Sunday roast now....mmmmmm.
Sunday 28 February 2010
Tuesday 23 February 2010
Sickly and nervous
Urrgh. I've now had a cold since Friday which has developed into a hacking cough. I spent all last night coughing and ended up watching the figure skating at 4am in the morning as I just couldn't sleep! As good as it was watching the Canadians take gold, it wasn't really my idea of fun at that time in the morning. I went to the doctor this morning who has said he thinks it's just a cold but who has given me an advance prescription in case it develops.
It makes me really nervous. Last time I had an infection, my levels went up by 8 g/l.....and that starts to take me pretty high. Hopefully me having taken curcumin might help to balance that out and I'll stay stable, but I can't say I'm confident. I'm trying to ready myself for the worst whilst staying positive...an interesting combination!
I've upped my curcumin now to 6g...not sure whether the effects are due to that or being poorly, but I'm not sure I'll be going any higher unless things calm down with that too (see previous posts!!)
Oh yes, and the one bonus of going to my GP today, was that I managed to get an exemption form for prescriptions. I suppose there has to be some benefit from having the big 'C'! My eczema has definitely been worse in recent months and while I don't know that there is definitely a link, it's been costing me a fortune in creams!
Fundraising is now up to £1545!!! I can't believe it. I've upped my target to £3000 as people suggested I'd set it too low! So we'll see how that goes too. People have been so amazingly generous....and some of them really can't afford it but have still given.
Right, I need to go and rest until preschool pick up....my eyes are blurring in front of me!
xx
It makes me really nervous. Last time I had an infection, my levels went up by 8 g/l.....and that starts to take me pretty high. Hopefully me having taken curcumin might help to balance that out and I'll stay stable, but I can't say I'm confident. I'm trying to ready myself for the worst whilst staying positive...an interesting combination!
I've upped my curcumin now to 6g...not sure whether the effects are due to that or being poorly, but I'm not sure I'll be going any higher unless things calm down with that too (see previous posts!!)
Oh yes, and the one bonus of going to my GP today, was that I managed to get an exemption form for prescriptions. I suppose there has to be some benefit from having the big 'C'! My eczema has definitely been worse in recent months and while I don't know that there is definitely a link, it's been costing me a fortune in creams!
Fundraising is now up to £1545!!! I can't believe it. I've upped my target to £3000 as people suggested I'd set it too low! So we'll see how that goes too. People have been so amazingly generous....and some of them really can't afford it but have still given.
Right, I need to go and rest until preschool pick up....my eyes are blurring in front of me!
xx
Friday 19 February 2010
Humbling or what?!
Well I have to say I am absolutely gobsmacked. After my announcement that I was going to do the Yorkshire 3 Peaks, less than 48 hours ago, I have already reached 40% of my target of £2000. I don't have to raise anything for this challenge, but I really want to be able to do something at this stage, while I still can. I cannot believe how generous people have been. It amazes me.
MyelomaUK have already supported me immensely with their discussion board and their website, so it is really important to me to help them. Maybe some of the research they fund will also help in finding a cure for this cancer. Those of us with it, can but hope.
So, if you're reading this and have sponsored me, THANK YOU ever so much. Nick and I are both really touched by your support and your messages of kindness. And if you haven't....there's still lots of time!!
MyelomaUK have already supported me immensely with their discussion board and their website, so it is really important to me to help them. Maybe some of the research they fund will also help in finding a cure for this cancer. Those of us with it, can but hope.
So, if you're reading this and have sponsored me, THANK YOU ever so much. Nick and I are both really touched by your support and your messages of kindness. And if you haven't....there's still lots of time!!
Thursday 18 February 2010
Curcumin - hope for the future?
I forgot to write in my previous post that I have now started on curcumin further to reading Margaret's health blog (see links to the right). She raves about this as having kept her stable for years now, and I have heard a number of other people saying that and fish oil are thought to have kept them stable too.
So, on the day I gave my last lot of bloods (5th Feb) I also started taking it. It's not cheap at £35 for a pot that will probably only last me a month, but if it keeps me stable for longer, it's worth every damned penny. Anyway, I started on 1g a day and am now up to 4g a day. Supposedly the recommendation is to go up to 8g a day next week, but I'm not sure whether I'll get that high. Without going into too much detail, it does have some side effects - I could well keep Andrex in business!!!
Anyway, today I found a link on the Myeloma Beacon about Curcumin too which I will try to attach shortly.
Myeloma Beacon - curcumin and multiple-myeloma preclinical studies
It seems that smaller research projects have backed up what individuals are saying, but because the population that has been trialled has been so small, it hasn't been deemed to be 'significant'. Blimey, anything surely is worth consultants trying out with their patients if it prolongs life/ quality of life.
I'll give it a go for a few months and hope that my readings stay stable....if that happens, I'll keep going!!!!
So, on the day I gave my last lot of bloods (5th Feb) I also started taking it. It's not cheap at £35 for a pot that will probably only last me a month, but if it keeps me stable for longer, it's worth every damned penny. Anyway, I started on 1g a day and am now up to 4g a day. Supposedly the recommendation is to go up to 8g a day next week, but I'm not sure whether I'll get that high. Without going into too much detail, it does have some side effects - I could well keep Andrex in business!!!
Anyway, today I found a link on the Myeloma Beacon about Curcumin too which I will try to attach shortly.
Myeloma Beacon - curcumin and multiple-myeloma preclinical studies
It seems that smaller research projects have backed up what individuals are saying, but because the population that has been trialled has been so small, it hasn't been deemed to be 'significant'. Blimey, anything surely is worth consultants trying out with their patients if it prolongs life/ quality of life.
I'll give it a go for a few months and hope that my readings stay stable....if that happens, I'll keep going!!!!
Monday 15 February 2010
Chin thankfully up!!
Well, I knew I'd be bad at keeping this up to date, and oh yes, I am being. Still I suppose that's partially good as it means I'm not totally preoccupied with it!
I had my results and latest appointment with my consultant on Friday. Thankfully no rise with my paraprotein with it staying at 40g/l - hurrah!! My calcium has gone back into the red slightly and my haemoglobin has gone down a bit (looks like out of the normal zone and into the red, but I can't quite remember what he said it was and am still awaiting my written confirmation).
BUT, I am still feeling really positive about it all. I largely need to thank someone I met via this blog who has told me that his levels rose to over 70, 3 years after diagnosis, and that he was still asymptomatic. What a result. I know we're all different, and that I may not be so lucky, but I really feel I have to hang on to that at a time where otherwise I would spend my waking days (and sleepless nights!) worrying about it all. If it gets worse quicker, I'll just have to deal with it then, but until that day, I'm going to try to keep positive and enjoy what I do have.
So since then, I haven't really stopped to think about it much. I think I'm going to tame my presence on the MMUK site and the Under 50 site too as that's becoming a bit too compulsive for me and I'm dreaming myeloma at night....not nice!! And not helpful when I'm managing to forget about it during the day!
Anyway, that's it for the update. Just finished painting the spare room ceiling so am going to sort dinner and collapse I think!
Night
I had my results and latest appointment with my consultant on Friday. Thankfully no rise with my paraprotein with it staying at 40g/l - hurrah!! My calcium has gone back into the red slightly and my haemoglobin has gone down a bit (looks like out of the normal zone and into the red, but I can't quite remember what he said it was and am still awaiting my written confirmation).
BUT, I am still feeling really positive about it all. I largely need to thank someone I met via this blog who has told me that his levels rose to over 70, 3 years after diagnosis, and that he was still asymptomatic. What a result. I know we're all different, and that I may not be so lucky, but I really feel I have to hang on to that at a time where otherwise I would spend my waking days (and sleepless nights!) worrying about it all. If it gets worse quicker, I'll just have to deal with it then, but until that day, I'm going to try to keep positive and enjoy what I do have.
So since then, I haven't really stopped to think about it much. I think I'm going to tame my presence on the MMUK site and the Under 50 site too as that's becoming a bit too compulsive for me and I'm dreaming myeloma at night....not nice!! And not helpful when I'm managing to forget about it during the day!
Anyway, that's it for the update. Just finished painting the spare room ceiling so am going to sort dinner and collapse I think!
Night
Friday 5 February 2010
Wait and see
Ok well it's done now...next bloods given at lunchitme and now we just have to wait and see what they say next week. I have a positive feeling about this one....I don't know why but I think my readings will go down next time - oh how happy will I be!
Nick's home tonight after the week away....so lovely to have him back.
Weekend of decorating ahead of us...want to get the spare room up and running now that the kids have moved in together. Not looking forward to the sanding but can't wait for the room to be ready!
Nick's home tonight after the week away....so lovely to have him back.
Weekend of decorating ahead of us...want to get the spare room up and running now that the kids have moved in together. Not looking forward to the sanding but can't wait for the room to be ready!
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