Monday, 29 March 2010

General Update

Well, I thought perhaps I should write an update as I haven't for a couple of weeks....I sometimes think it shows things are going well with me when I don't means I'm just getting on with life and not pondering too much on how things are going.

I've just had a really lovely weekend with my family. Nick was lovely and took the children away with him for a night so that all 5 of my siblings could come over for a dinner and to stay the was such a great evening and even nicer as we haven't done it for far too long! We are so lucky to all still get on well enough to do something like this....I know too many families where small things grow into large feuds. I had been a bit worried that I'd drink too much and get teary, but I was in such a good place, and so determined for it to be a nice evening that we didn't talk about my SMM at all....well hardly!! It certainly wasn't a 'topic' which was great!!! I am so lucky to have such a fantastic family and I love them all very very much.

Nick and I have had a long chat about how we manage my fundraising for the 3 Peaks along with retaining some dignity and not sharing our life with the whole world (she says as she writes a blog accessible to anyone who wants to read it!!). I think I had become very wrapped up in just raising money and forgetting that actually this affects the kids and Nick as well as me. So it had all become a little too public. So now, we're going to just calm it all down and try to raise the remainer of the money a little more quietly. After all we're the first to say that we don't want people to see us as victims in this, so we need to lead by example.

I am so lucky to have Nick....and I don't always make that obvious to people. I love him ever so much and he is ever so supportive and loving to me and the kids. How he has put up with me over the past few months I don't know...but hopefully all of this is making us stronger and stronger together..I know he makes me into a stronger person - all you can ask for from your best friend and husband.

So moving on (before I'm far too nice about my beloved!!). I have been trying to get into more music recently and have been lucky enough to get back in touch with an old teacher of mine who has introduced me to a whole load of stuff. So as I find new songs I love, I think I'm going to post them up...maybe I'll aim for one every post...not that they will link to the post at all!!!

Friday, 19 March 2010

Good, Bad, or Average?

Appointment day today and my readings have changed as follow;
Protein up 4 to 44g/l
Hameoglobin down .3 to 11.1
Calcium - back in the normal range (can't remember what exactly).

Strangely, my consultant seemed to think it was fine and not at all concerning. He didn't even seemed that bothered about when my next appointment would be...4 weeks or 6 weeks? The reason I think it's strange as when my protein readings stayed stable last time, he saw it as imperative that he saw me in 4 weeks. And seemed to suggest that it needed monitoring very carefully.

I asked him about getting my siblings tested for a Stem Cell Transplant (SCT) in case I need one at some point, as one of them is going to live in Beijing for 3 years. And he pretty much told me I was getting ahead of myself and was being ridiculous. And when I suggested that everytime I was ill, my levels deteriorated, and that this time it had happened, but not as badly, because in my view, of the curcumin I've been taking, well, you'd think I was talking to him with a yellow and blue monkey on my head!

So why he bothered to ask me if I had any pain in my back I'm not sure, as I was very much inclined to tell him where to stuff his question....not very polite I can tell you.

Should we change consultant? Well it seems like a bad idea at the moment because of the fact that he fits his diary around us which is great with Nick being away so much. And he is close which makes it easier for these 4-6 weekly appointments we're having. But if he makes me feel like he did today again, I will be looking to change.

Anyway, onwards and upwards....I have 6 weeks till the next appointment so I've just ordered another 6 weeks supply of 1g curcumin tablets (only a snippet at £85...uurrgghhh!!!) and am determined to prove to him that it does have an impact and is not just a new fangled idea sprouting from health food shops to make extortionate amounts of money out of us poor sods who will believe that anything will keep them alive for longer!!!

Ironically, Nick put some music on in the car as we left the hospital.....and changed it before I sat was Ironic and Stay with me....the song that I'd sworn I was having at my funeral in my moments of doom and gloom.....but it made me laugh when he told me today. I'll try to attach it as I love the song!

Thursday, 11 March 2010

Happy Vibes

I wasn't planning on writing anything today, but I had an email from someone who has really helped me through my diagnosis in the last few months, and it made me realise that perhaps I'd left my last post on a bit of a low....and that maybe, I'd made it sound worse than it was. Well, actually, it was how I felt, but only for a very brief time. So for those of you that are reading this and looking out for me....don't worry, I'm ok!!!

I think I made it sound like life is a total struggle. It isn't and most days, it doesn't overwhelm me at all....only the odd day here and there....and that was when I last wrote. But I've been quite pleased on how this period has been better than last time. In fact, each time, I seem to have less emotional ups and downs than the time before....and am definitely able to pull myself out of them much faster. And here's hoping that I have many many years of getting better and better at being positive and seing the glass half full!! People do, so why not me.

So today is good! And all those good vibes are going all the way into that damned blood plasma overnight so that I get a good reading from my bloods which I give tomorrow :) !

Tuesday, 9 March 2010

On reflection....

It's funny, I've been thinking lots about what people in my past are up to now. I've kept in touch with so many people....not one to drop friends me, but with everything that has happened over the past 9 months, I feel like I just want to see where people are and what they're doing.

The last few days have been tough....probably because I'm now in the run up to my next appointment. I think I've been so focused on my fundraising up until now that the last 3 weeks have flown by...sort of been working off the adrenaline. And then last week I just started to feel really depressed again....just really moody. No cause, not even overly sad about MM, but it did turn into that. Poor poor Nick!!!

I'm not sure it helped watching 'My Sister's Keeper'. I blubbed from 60 seconds in until the end. I mean, I know I'm emotional, but that was just ridiculous. But it was hard and made the idea of chemo pretty real to me. I am still not close to that, and hopefully won't be after next Friday, but I can't help at these times, but to worry a bit about what the future might hold. Everything people ask us to do, and I'm there wondering if I'll be well enough, whether I'll have started treatment, and when we're talking years ahead, wondering if I'll be lucky enough to still be here. There is so much unknown with this bloody cancer and I really hate it. I'm not quite sure what I did to have ended up with this on my plate, on our plate. But then I think perhaps I am lucky, there are people out there who don't have loads of family and friends to support them through this sort of thing....I do. The most amazing family and friends ever and I am indebted to them already.

I just hate this run up to giving blood and getting my results a week later. I wonder if the run up to the bloods is sometimes as hard...once that's done, it's all out of my control!

Nick's away this week....going to try to fill up my week so it isn't so lonely. He's got loads on so I really want to stay positive for him.

Anyway, chilling with a glass of wine now and looking forward to a nice day with Sam tomorrow....I might even take him to the farm for the first time in 2010!!

My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun