I had my appointment on Tuesday and things are still ok. My paraprotein has come down again from 3 to 2 – only 2 more and I’d be classed as being in complete remission! So that is all good. The only slightly unnerving thing is that my neutrophils are very low which means that I am really prone to infections and illnesses. Great at this time of year when everyone around is snivelling and snotty! So one plea is that now I know this, if you are coming to see us or visa versa, please don’t if you have an illness of any kind! I’d rather re-arrange. It is quite common on the drugs I’m on- nothing to worry about and just means they’d lower the dose if it continues. I suppose in the long run it could mean me being taken off the drugs.
But in terms of life being complicated, I am just finding it tough at the moment. I should be relieved and shouting from the rooftops about how good things are now, but instead I feel really low. I have thrown myself into things but am now shattered from that and feeling ropey again for the first time in weeks. I slept for 2 hours this morning and still felt terrible…it feels like when you are fluey.
So I don’t really know what’s going on or why. I don’t know whether to pull out of everything and just focus on the family, but I’m scared then it will remind me of what I’m living with. But doing all the voluntary stuff etc means I get stressed that I’m not looking after means home enough. There doesn’t seem to be a right answer.
Nick said tonight that he wondered if it was because for the first time since I was diagnosed, I have really had an insight into how our life may look in the future…that now I have had one transplant it is like a timebomb has started ticking. And funnily, I think that dream the other night really affected me. Stupid or what. For the first time in ages I just want to run away from everything and everyone, curl up in a ball and be on my own. And feel free to cry. I don’t feel I have been putting on a front ( until recently) but somehow it all hits me at once and then I feel awful like I have done today. The poor kiddies had me in tears in the car this evening and then saw me crying with nick later. Bless sam though, he came and gave me his favourite teddies to make me feel better- he doesn’t often do that for someone!!!
It is so weird knowing this cancer is likely to be back to haunt me. For so many there are cures. Or at least very long term remissions. Not with MM unless you are remarkably lucky. I hear of friends ahead of me in their journey and it reminds me of what might and probably will come my way. And sometimes it reminds me of how MM is such a horrid cancer to die from. How it is likely to be a long painful time….and I can’t bear that to be what happens to me or how the kids and nick remember me. I hope desperately we are many years off that though…..but please don’t go on about cures and research – I can’t tell you hard it is to hear those comments. In some ways I’d rather people said nothing at all.
A bit of a morbid post today. Sorry. Tired and feeling so miserable I just needed to get it all out.
