Why is it so complicated?

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.

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4 responses to “Why is it so complicated?

  1. Reality sucks with MM… and never apologize. I will just keep on intending that your status is improving daily, your numbers are moving in the right direction and your medical team is spot-on in keeping you on a remission track, and this is for the highest and best good of all concerned, so be it and SO IT IS! Whooooooooo!

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  2. I know it’s a couple of days since your original post and hey, maybe you feel much better. Still I’d like to comment on your post. Having been to the infoday yesterday I have been left with a similar feeling to you. All the talk of “future treatments” most of which seem to be years away has left me in a right state of “what if tomorrow Mike is told it is back?” He has a clinic appointment tomorrow.

    I know that unlike the patient yesterday who after a SCT and then 12 months of REV who can still do a 10 mile run, Mike is still suffering from the Melphalan nearly 12 months later. It’s as much as he can do to walk around the park. Positive thinking is great most of the time, but we all need the time to howl at the moon and cry until we are dry sometimes.

    You are not alone x x x

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  3. I’ve only just gotten around to reading this post today, so I’m sure your feelings will have moved around a bit in the month since writing this, and I’m hoping you’re feeling calmer/more relaxed at the moment. I just wanted to agree with Trelawna’s comment about needing time to be sad, down, tetchy… however it is for you. I think if you don’t judge or fight it, it’s not so bad, but you/we all do need time to have those thoughts/feelings and not feel guilty about it either.

    I’ve heard that this low mood/depression is a very common response to the aftermath of intensive cancer treatment. I think it may be harder for us as we’re not cured, unlike people who’ve been cured of their cancer. On top of that, just waiting for something to happen, which we don’t know when, is rather unsettling.

    I was surprisingly upbeat throughout the initial treatment and right up to the SCT, but since then, when I’m now mostly feeling better physically, I am much worse mentally/emotionally. I can’t seem to motivate myself or not for very long, find it hard to reach out to many people, often don’t get moving in the morning till 10 or 11am, not been writing my blog and I question just about everything about life, friends, the future and the point of it all.

    I’m not sure if it’s helpful for you to read this or not. I guess I want to let you know it’s not just you and you are actually dealing with it all remarkably well. I’m sure Nick and the children play a huge role in that. But anyway, well done for letting it all out. It’s helpful for the rest of us who also have those negative down feelings. So thank you!

    I don’t get too much of the ‘cures and research’ stuff, but if one more person tells me to be positive, I might just have to smack them. šŸ™‚

    I’m not at all surprised your dream affected you. Obviously the fear of relapse is lurking in the background, as it is for all of us. I think there’s something very powerful about the way we hear things though. One friend with MM was told on diagnosis that it was ‘treatable’, before they mentioned the word ‘incurable’… She seems to be dealing with it all much more positively than I am, who has the word ‘incurable’ ringing around my head. Maybe you do too.

    On the flip side, at my first appointment post-SCT, the Prof calmly mentioned that he has several patients who are in remission 15 years post-SCT and that also keeps ringing in my head – almost taunting the ‘incurable’ voice.

    So maybe there’s something about focusing on the ‘treatable’ and long remission possibilities more than the ‘incurable’ and imminent relapse… Now quite sure how we do that, but if you can find it in you, it may help…?

    I don’t know if you get this too, but I tend to feel a bit like I’m on an emotional see-saw. I do my best to accept all my feelings, even if they’re not always the most socially acceptable. I hope you can find acceptance too.

    Big hug for you. x

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  4. Hi Jet, and thank you for such a long considered response.
    You are right that it is an emotional roller coaster! I definitely accept my feelings but I don’t always like them. I don’t like being miserable and I don’t like how it affects my family. I know it will happen from time to time, and hopefully the kids will learn that life is tough but that we can get through it….but they are young to be learning such a tough lesson!
    I think I do focus on the treatable aspect although I am well aware that we may have got this cancer 10 years too early to be cured. I hope not, and I need to hope that I will get a reasonable time to see my kids grow up into adults…at least that way I can begin to imagine what their adult life might look like….at the moment that is impossible.
    But yes, there are tough times ahead of us…..but good ones at times too.
    Anyway, thanks again, and I hope that you can find some focus so that you feel happier with what you are and aren’t doing each day. The biggest thing with my blog is that I write it very much for ME and not to help others out there….not most of the time anyway.
    Take care
    Debs x

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