Firstly, I need to correct my previous entry. Talked about the person having had an auto....I meant an allo. Auto is when you have your own stem cells put back in after chemo, allo is when you use a siblings cells (or a donor I think). I still get mixed up between the two and hopefully it will be a long time before it is something so integral to me it rolls of the tongue!
Feeling a bit low today. But I suppose that's not bad as it's been some time since I did. I've been having some pains across my sort of collar bone region. They sort of come over me in waves and then go away and I feel fine again. God knows what is causing it. Hopefully it's all the walking I'm doing for my 3 Peaks, but who knows. It seems an odd place to get strains, unless I'm now walking with a very odd posture...could be that I suppose.
The silly part of me then gets scared that it's more ominous than that. Must remember to ask the consultant whether my protein could stay the same, but symptoms start developing none the less....i.e if my body gives up coping with the high levels of protein that are there.
I'm also feeling shattered at the moment. But that probably IS to do with the walking, having two kids under 6, and staying up too late. Can't blame SMM for everything hey (much as I'd like to! Esp the increased appetite!) Actually one thing I do think might have affected my energy levels, is the amount of rubbish I'm eating. I'd sort of given up on the dairy free diet, but I think I'm going to go back onto it. In fact the more I write this, the more I wonder if that is what has contributed to the ABSOLUTELY FOUL mood that I'm in at the moment. So, dairy free again from tomorrow and I'll update you on whether it works!
Anyway, will make myself perk up! Off to see 2 new babies in the family tomorrow, and then to one of my sisters on Monday for a couple of days. Hopefully being away will help and I can chill out a little.
Training is still going well....did a total of 36 miles in 8 days, and then on Friday did another 6 miles. My knee is giving me a little bit of gip but I'm hoping that it will calm down given I'll have over a week off between my last walk and my next one. Luckily it doesn't hurt while I'm walking, but instead the day after!! Don't care if it kills so long as I do the 26 miles required for the 3 peaks!!!
Now, I've had another music album recommended to me which I'm quite liking; Thea Gillmore. I particularly like 'Drunken Angel' although am not as keen on all the others....think I'd have to pick and choose!
Saturday 29 May 2010
Friday 21 May 2010
Exhausted but happy
Well, I am now that little bit further on my journey to the Yorkshire 3 Peaks and have just completed a 17 mile training session. I have to say I felt really good completing it but was definitely ready to stop at the end.....just have another 9 miles to add and then I'll be there....a doddle....not!!!! Not sure how many times I'll be able to fit in a walk that long what with the childcare costs but it was good to know it was doable and how fast we will need to walk....bloody fast!!! We did it in just over 6 hours today so it was just under 3 miles an hour. Sounds slow, feels fast.
The sponsorship has stabilised now but I'll go for it again in the run up to the actual event. I would love to get to £5000, and am really hoping with the sponsorship from the other people walking with me, that we might even get to £10,000! What an achievement that would be.
I can't remember if I talked about the lady I have met via an Under 50 website. She had an auto SCT (Stem Cell Transplant) in January and has been so ill in hospital. This week was a real boost to all of us on the site as she has got back to us and told us that while it was touch and go for a while, that she is now on the mend. There is a 25% chance of dying after an auto SCT so I think it brought it home just how big a decision it is to make. Hopefully that will be the end of the bad luck for her and she will be on the mend.
Right, better get off now, need to get those kiddies to bed and glam up for a night on the town....if I can walk!!!
The sponsorship has stabilised now but I'll go for it again in the run up to the actual event. I would love to get to £5000, and am really hoping with the sponsorship from the other people walking with me, that we might even get to £10,000! What an achievement that would be.
I can't remember if I talked about the lady I have met via an Under 50 website. She had an auto SCT (Stem Cell Transplant) in January and has been so ill in hospital. This week was a real boost to all of us on the site as she has got back to us and told us that while it was touch and go for a while, that she is now on the mend. There is a 25% chance of dying after an auto SCT so I think it brought it home just how big a decision it is to make. Hopefully that will be the end of the bad luck for her and she will be on the mend.
Right, better get off now, need to get those kiddies to bed and glam up for a night on the town....if I can walk!!!
Friday 14 May 2010
Was there a UK power cut 9 months ago????
Well we seem to have an abundance of babies at the moment. We'll have had at least 5 being born within the last 3 weeks...very gorgeous all of them so far and I'm loving the cuddles...and being able to give them back!
But it has made me stop and think. I always said Sam was my last baby. I've been so adamant we gave everything away! But I know that Nick has always hankered after more...funny really as when we got together it was him that wanted two and me that wanted more!! Recently I've really started thinking about it more with so many babies around and with lots of my bestest friends being pregnant. I do wonder if it wasn't for my diagnosis whether we'd be rethinking the decision to stop. But I feel like that would be really selfish now that we know. Even if Nick was prepared to take the risk of having to look after them on his own, it is about more than that. It is about what we'd put them through if I did get ill enough to need treatment.
I sort of feel a little sad about it at the moment. Only a little as I feel so grateful and lucky to have two healthy, gorgeous children already. I know that many people would give anything for that. But despite being about to get my life back when sam starts school in September, part of me hankers after that baby again (looking at Rebecca's baby photos didn't help!)
So, next time I'm looking wistful, just remind me that it has been 5 years of limited sleep, years of nappies, constant arguments and a limited life of my own...hopefully I'll snap out of it pretty fast!!!!
But it has made me stop and think. I always said Sam was my last baby. I've been so adamant we gave everything away! But I know that Nick has always hankered after more...funny really as when we got together it was him that wanted two and me that wanted more!! Recently I've really started thinking about it more with so many babies around and with lots of my bestest friends being pregnant. I do wonder if it wasn't for my diagnosis whether we'd be rethinking the decision to stop. But I feel like that would be really selfish now that we know. Even if Nick was prepared to take the risk of having to look after them on his own, it is about more than that. It is about what we'd put them through if I did get ill enough to need treatment.
I sort of feel a little sad about it at the moment. Only a little as I feel so grateful and lucky to have two healthy, gorgeous children already. I know that many people would give anything for that. But despite being about to get my life back when sam starts school in September, part of me hankers after that baby again (looking at Rebecca's baby photos didn't help!)
So, next time I'm looking wistful, just remind me that it has been 5 years of limited sleep, years of nappies, constant arguments and a limited life of my own...hopefully I'll snap out of it pretty fast!!!!
Friday 7 May 2010
Bring it on!
Election day, a huge day for this country, and a huge one for me. And I think that my appointment today has possibly been the bigger success of the two!!! I'm not going to get into politics on here but will share how my day has gone(how big headed is that???!!)
We are over the moon as my protein levels have gone down to 39. That's less than they were before the last appointment and I have to say that I put it all down to the curcumin I've been taking. Who know's if I'm right or wrong but it seems to be doing the job so it is worth every penny of the cost!!!! My consultant, despite still being a bit dubious about the whole 'alternative therapy' concept, even said that if I could provide him with bona fide research he would be interested in reading it! Result in itself as I think that he should at least be mentioning it to patients, even if he can't recommend it.
My haemoglobin levels are still dropping slightly (now 10.9) but he isn't worried about that even if it is Myeloma related. Not yet anyway! Somehow they forgot to do the calcium measurement but I declined the option to get it done again today and said we'd wait till next time.
It has been such a good day...I have just walked round with a permanent smile. I know it doesn't mean I'm getting better, as that just can't happen, but it does mean that I'm stable at the moment and it gives me so much hope. Every month that I get where I don't need treatment is just fantastic and means that the kids are an extra month older....I can't ask for more than that really!!!
I really want to take this opportunity to thank everyone who has been supporting us over the past year. It has been so tough at times, and at the moment we just seem to be doing really well with it all, and that is a lot to do with how great you have all been. We are now able to think more positively, whilst also knowing that people are there for us if we need it. And to all those people who are praying for us....keep it up!!!
I also want to say how much it means that people have supported my 3 Peaks Challenge. I think that has really helped me to be positive and to have a focus. Someone said to me today that I have just looked so much happier over the past couple of months and I think it is a lot to do with the walk, the training, and the generosity in people's attitude and sponsorship for the event. Next week, I plan to do my first 10-15 mile walk!!!
So bring on what is to come....we will fight it all the way and beat it for as long as we possibly can!!!
We are over the moon as my protein levels have gone down to 39. That's less than they were before the last appointment and I have to say that I put it all down to the curcumin I've been taking. Who know's if I'm right or wrong but it seems to be doing the job so it is worth every penny of the cost!!!! My consultant, despite still being a bit dubious about the whole 'alternative therapy' concept, even said that if I could provide him with bona fide research he would be interested in reading it! Result in itself as I think that he should at least be mentioning it to patients, even if he can't recommend it.
My haemoglobin levels are still dropping slightly (now 10.9) but he isn't worried about that even if it is Myeloma related. Not yet anyway! Somehow they forgot to do the calcium measurement but I declined the option to get it done again today and said we'd wait till next time.
It has been such a good day...I have just walked round with a permanent smile. I know it doesn't mean I'm getting better, as that just can't happen, but it does mean that I'm stable at the moment and it gives me so much hope. Every month that I get where I don't need treatment is just fantastic and means that the kids are an extra month older....I can't ask for more than that really!!!
I really want to take this opportunity to thank everyone who has been supporting us over the past year. It has been so tough at times, and at the moment we just seem to be doing really well with it all, and that is a lot to do with how great you have all been. We are now able to think more positively, whilst also knowing that people are there for us if we need it. And to all those people who are praying for us....keep it up!!!
I also want to say how much it means that people have supported my 3 Peaks Challenge. I think that has really helped me to be positive and to have a focus. Someone said to me today that I have just looked so much happier over the past couple of months and I think it is a lot to do with the walk, the training, and the generosity in people's attitude and sponsorship for the event. Next week, I plan to do my first 10-15 mile walk!!!
So bring on what is to come....we will fight it all the way and beat it for as long as we possibly can!!!
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