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!!


  1. Does your company offer any kind of short term disability options? And not being able to get good sleep is important for your long term health as well. Would your doctor let you take either Valerian root (smells like old stinky sneakers, but helps you sleep) or another herbal sleep aid? The reason I suggest the herbal route is that they don't leave you groggy the next day which some of the pharmaceuticals do.
    Just an idea....

  2. Hi Sandy,
    I sort of work as a contractor and have done for a couple of years now so they haven't really got an obligation unless I wanted to be stroppy about things which I don't. I work in HR so know the things I can look at but we'll see what they come up with first.
    I'll definitely speak with the consultant about sleeping aids as I'm now on about 5 days of majorly disturbed sleep....not good for the bags I can tell you....I look like the walking dead!!!! And my patience with the kids wears thin so much quicker!
    Thanks for the ideas....will definitely look into them!

  3. My battle with Myeloma started when I was diagnosed in February 2009 when I was diagnosed approximately one week after my now husband proposed!
    I have been through everything that you are going through now, and actually had my stem cell transplant towards the end of 2009. If you need a chat, or want to ask any questions feel free to e-mail me back.
    I am substantialy older than you I think, my kids are grown up and I have grandchildren - having said that, I am still only in my 40's, so still prety young to be going through this.
    Take care

  4. Thanks for your comments Delia. You're not substantially older at all....I'm 36 tomorrow!! hope that all has gone well with you since your transplant. We are young aren't we....but maybe that gives us an advantage...I hold onto that thought.
    All the best


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