Ok so yesterday was d day and my blood has now gone...nothing I can do about the results now. Not that there is anyway. I get my results on the 5th July so hopefully all will be good. I'm not quite as optomistic this time as I've not been well again. Coughs, colds, extreme eczema and infections. Other that that, fit as a fiddle! I've said before that I think there is some link between illness and my myeloma progressing, but I'm just hoping that the curcumin is helping at the very least so that perhaps even if I do see an increase in my paraprotein, that it isn't major.
All in all, I'm still feeling pretty positive about life. Unusual for me so close to an appointment, but I'm hoping that it's a sign that I'm starting to learn to live with the SMM rather than fighting it and feeling like a victim. After all, I might have a few years yet with no symptoms/ treatment. And all I can keep hoping for is that the prayers from my parents churches and elsewhere, are doing their job too!!! Maybe I could be that miracle that was suddenly fine after a diagnosis!
Busy week ahead in the run up to my 3 Peaks. Only 12 days to go. And finally my knee is starting to feel less painful so I'm really hoping that it's ok. I'm more nervous now than ever that I've done the wrong type of training, but at least I'm fitter. The distance (25 miles) doesn't worry me, but the peaks do. I went for a long walk with 2 of my sisters at the weekend and found the hills so tough. I have to stop constantly. And that's with training in the Chilterns. Oh well, maybe it just means I shouldn't be so hard on myself if I don't do it in the 10 hours I'd hoped for.
Not much time in the next week or so to train though. School sports day tomorrow, working Thursday, promised a family weekend, appointment on Monday, sam's school induction on tue, him at home on wed and work on the thu again.....hmmm, somewhere in there I HAVE to get some hill walking in the equation!!!!
Till next time.
Tuesday 29 June 2010
Sunday 20 June 2010
Hungover but happy
Well, I've had a really great weekend and am now tired, slightly hungover but very happy!
Friday started by meeting up with the Under 50 group in Wimbledon. We had over an hour with Professor Ray Powles who is an old hat in MM (Multiple Myeloma) and who spent the time talking to us all about what's in the pipeline and a bit about how we should think about facing/ managing our treatment as and when it is necessary. The great things I took out of it were that
a) my consultant is probably doing the right things for me (even if he isn't great at communicating with me about what is going on with my body and what MM is/ what it does/ what the indicators all represent)
b) not to get to worried about my Paraprotein levels as they are all individual and that we have to just look at the pattern once we have that first reading. That was really useful to hear as I always wondered how on earth I could have a reading of over 40 and not need treatment but other people have a reading of 13 and be talking about SCT's and chemo.
c) that it would be totally acceptable to get him to give me a second opinion if I wanted it, and that I didn't need to wait until I needed treatment.
It was just so useful and I could have spent hours in there talking through the stuff even though a lot of it was focused on those already on treatment. Someone asked if it didn't scare me listening to what I'm going to have to face in the future, but I just felt like it empowered me and that I was starting to understand this damned condition for the first time in the year since I was diagnosed.
Anyway off to the pub after that for a large number of G&T's and a chance to start to get to know my 'cyberfriends' that I have met via the website and talked to on facebook etc. That was just lovely as they were all SO SO nice. And in itself that was positive as it was great to see people making the most of life despite what it was throwing at them all. And people in the same situation as me too, dealing with jobs/ kids and the fact that life is going to be shorter for us than we had expected.
Back to my sisters after that and then home the next day where one of my bestest friends came round, was a bad influence and kept me up drinking till 1.30am....I am totally going to blame her (nothing to do with me of course!!). So now I'm off to bed as with the kiddies being up at 6.30 I'm pretty shattered....but very happy.
Here's to friends and to making the most of life with them!!!
xx
Friday started by meeting up with the Under 50 group in Wimbledon. We had over an hour with Professor Ray Powles who is an old hat in MM (Multiple Myeloma) and who spent the time talking to us all about what's in the pipeline and a bit about how we should think about facing/ managing our treatment as and when it is necessary. The great things I took out of it were that
a) my consultant is probably doing the right things for me (even if he isn't great at communicating with me about what is going on with my body and what MM is/ what it does/ what the indicators all represent)
b) not to get to worried about my Paraprotein levels as they are all individual and that we have to just look at the pattern once we have that first reading. That was really useful to hear as I always wondered how on earth I could have a reading of over 40 and not need treatment but other people have a reading of 13 and be talking about SCT's and chemo.
c) that it would be totally acceptable to get him to give me a second opinion if I wanted it, and that I didn't need to wait until I needed treatment.
It was just so useful and I could have spent hours in there talking through the stuff even though a lot of it was focused on those already on treatment. Someone asked if it didn't scare me listening to what I'm going to have to face in the future, but I just felt like it empowered me and that I was starting to understand this damned condition for the first time in the year since I was diagnosed.
Anyway off to the pub after that for a large number of G&T's and a chance to start to get to know my 'cyberfriends' that I have met via the website and talked to on facebook etc. That was just lovely as they were all SO SO nice. And in itself that was positive as it was great to see people making the most of life despite what it was throwing at them all. And people in the same situation as me too, dealing with jobs/ kids and the fact that life is going to be shorter for us than we had expected.
Back to my sisters after that and then home the next day where one of my bestest friends came round, was a bad influence and kept me up drinking till 1.30am....I am totally going to blame her (nothing to do with me of course!!). So now I'm off to bed as with the kiddies being up at 6.30 I'm pretty shattered....but very happy.
Here's to friends and to making the most of life with them!!!
xx
Friday 18 June 2010
Under 50 with Myeloma
I'm looking forward to today as after months of speaking to people online, I'm finally getting to meet a whole bunch of people that I met in the 'Myeloma Under 50' group. They seem like such a lovely bunch and it will be really nice to meet them all in person. We're all meeting in Wimbledon for a catch up with a Myeloma Professor and then on for a drink (or five by the sounds of it!!).
Was a bit worried yesterday as I've developed a horrid cough and have infected spots all over my hands....I thought I'd have to cancel meeting everyone as one of the things with MM is that people have a compromised immune system. But luckily they've all been lovely and said that they don't mind me going given that we're meeting in a pub anyway!
Anyway, have got a day of running round madly to make sure all the childcare is in place, etc and then hopefully will get to have at least a couple of G&T's before the cough takes over!
Was a bit worried yesterday as I've developed a horrid cough and have infected spots all over my hands....I thought I'd have to cancel meeting everyone as one of the things with MM is that people have a compromised immune system. But luckily they've all been lovely and said that they don't mind me going given that we're meeting in a pub anyway!
Anyway, have got a day of running round madly to make sure all the childcare is in place, etc and then hopefully will get to have at least a couple of G&T's before the cough takes over!
Saturday 12 June 2010
Who's the Winner?
Well, having just watched a miserable opener from England in the football world cup, I thought I'd spend a quick 5 minutes updating everyone on where things are at the moment.
It's been a busy week on the fundraising front. My brother in law did a networking event down in Surrey and managed to raise over £500 towards his fundraising total...fantastic as he's now raised his £1000 target.
Then today I went over to my mum and dad's to help with a coffee morning for her church and my dads church. She'd had nearly £200 in donations before we started, but I was just gobsmacked as by the end she'd raised nearly £600...and there are cakes leftover to sell at her church tomorrow! Alongside the bring and buy sale she did, that means she's raised over £1600 so far. Definitely the winner of today!
It is just so fantastic...I think that before we take into account gift aid, the family will have raised over £10,000 for MMUK which is just amazing and will hopefully help raise awareness of Myeloma, as well as obviously contributing to valuable research.
My knee is so so at the moment. Wierdly, it seems fine in heels!! Maybe I should walk the 3 peaks in a pair of stilletos!!! With walking boots, I can feel it pulling so I think it is probably a hamstring pull or something. Someone has recommended me red flower oil which does help a bit so I need to remember to put it on a bit more regularly.
The bonus is that I'm still managing to do some walking.....I managed to do a 6 miler on Friday even if it was a little slower than normal. I tried out walking poles which I'm not sure about and made sure I stretched properly at the end. My knee is no worse than before so that is great!
Right, will go now to commiserate about a 1-1 draw with the USA :-(
It's been a busy week on the fundraising front. My brother in law did a networking event down in Surrey and managed to raise over £500 towards his fundraising total...fantastic as he's now raised his £1000 target.
Then today I went over to my mum and dad's to help with a coffee morning for her church and my dads church. She'd had nearly £200 in donations before we started, but I was just gobsmacked as by the end she'd raised nearly £600...and there are cakes leftover to sell at her church tomorrow! Alongside the bring and buy sale she did, that means she's raised over £1600 so far. Definitely the winner of today!
It is just so fantastic...I think that before we take into account gift aid, the family will have raised over £10,000 for MMUK which is just amazing and will hopefully help raise awareness of Myeloma, as well as obviously contributing to valuable research.
My knee is so so at the moment. Wierdly, it seems fine in heels!! Maybe I should walk the 3 peaks in a pair of stilletos!!! With walking boots, I can feel it pulling so I think it is probably a hamstring pull or something. Someone has recommended me red flower oil which does help a bit so I need to remember to put it on a bit more regularly.
The bonus is that I'm still managing to do some walking.....I managed to do a 6 miler on Friday even if it was a little slower than normal. I tried out walking poles which I'm not sure about and made sure I stretched properly at the end. My knee is no worse than before so that is great!
Right, will go now to commiserate about a 1-1 draw with the USA :-(
Tuesday 8 June 2010
Here's hoping.....
Went on another 10 mile walk yesterday in the new boots that I had to get. Mine had come to pieces when I did my 17 mile walk so I've had to buy some new ones. It all went well at the time and I had no blisters from the boots (well and truly recommend Northface!!). Unfortunately my knee which has been giving me a few problems the day after a walk, started hurting and is now in quite a lot of grief.
I'm just off to get a knee support, some pain killers and apparently red flower oil is meant to be good. I'm absolutely gutted after all the training I have put into this event that I am in so much pain. I think I'll have to tone the training right down which has really upset me. I feel like I've worked really hard to get into the right physical condition and now I'm going to have to stop or at least only do really short walks. My priority is to actually be fit enough to do the walk and if that means that I have to do it in more than the 10 hours that I had hoped to complete it in, so be it, but I am well and truly gutted.
So if anyone has any hints and tips (other than paying out for a physio which we can't afford after all the equipment I've bought!)please let me know!!!
The good thing is that Nick has said he'll drive the minibus for us....I'm really pleased as it will be lovely to have him up there with us, supporting the whole group (ane me!!!).
Anyway, better get off to buy this stuff and hope that it all helps my knee to recover.
I'm just off to get a knee support, some pain killers and apparently red flower oil is meant to be good. I'm absolutely gutted after all the training I have put into this event that I am in so much pain. I think I'll have to tone the training right down which has really upset me. I feel like I've worked really hard to get into the right physical condition and now I'm going to have to stop or at least only do really short walks. My priority is to actually be fit enough to do the walk and if that means that I have to do it in more than the 10 hours that I had hoped to complete it in, so be it, but I am well and truly gutted.
So if anyone has any hints and tips (other than paying out for a physio which we can't afford after all the equipment I've bought!)please let me know!!!
The good thing is that Nick has said he'll drive the minibus for us....I'm really pleased as it will be lovely to have him up there with us, supporting the whole group (ane me!!!).
Anyway, better get off to buy this stuff and hope that it all helps my knee to recover.
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