Day 79 – The fear is growing

I’ve been feeling a bit down the last day or two… came on really suddenly after what I suppose has been a really good spell. I’m not sure what exactly is the cause but I think that there are two things.

The first is that I am tired…..take that back….I am KNACKERED! Basically it is my own fault as apart from today, I haven’t had sleep for the past 4 days. I haven’t done that to be stubborn or because I’ve particularly been pushing myself, but because I truly didn’t feel like I needed it. For the first time in ages, I went to bed on Tuesday in the day and just couldn’t sleep….so I did stuff and that night felt fine :-). The next day was the same and yesterday I still felt good at lunchtime and so didn’t go to bed but pottered around the house. But last night at the kids teatime, boy did it kick in. I had to put them in the bath and go and lie down for a bit. And then Nick and I had a nice row that I picked about something that really wasn’t important. I ended up going to bed earlyish at 9.30 with feet that killed with the neuropathy, but fell asleep within half an hour because I was so tired. And today I have had another sleep but I’m still exhausted! I think my body is telling me not to forget what I’ve been through and that whilst I might get some respite from the daytime sleeps, my body still needs rest.

The other reason I think I’m tired and emotional, is because my d-day is growing closer. On Tuesday I go into hospital to have my 3 month bone marrow biopsy. I hate the biopsies as they are always painful, (even when I have diazipam!) but even more than that I hate what they mean. They tell me what my life looks like for a while, and this time, more than ever, they will tell me what my life is likely to look like for a long time. This biopsy will tell me whether I am in remission or not. It will tell me whether I can stay off the nasty drugs for a while. It will tell me just to what extent I can enjoy my family over the next 12 months. And I am so scared that it might tell me the wrong thing….that I have relapsed and that my transplant wasn’t a success. But I try not to think of that and to be positive. And then when I’m this tired it is hard to keep believing that.

Anyway, it is 2 weeks on Tuesday before I will find out so a bit of a waiting game! And in the meantime I need to try to forget (apart from when they’re digging the screwdriver into my backside!) and get on with enjoying life.


About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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2 Responses to Day 79 – The fear is growing

  1. The emotional roller coaster that MM causes is really hard to handle. I find when I’m tired, it is hard to keep my chin up about Tim’s MM. I hope you get all great news from your tests.
    Have you tried the zostrix or capsaicin creme for your feet? If you read
    Sean’s blog, you can see how he made out with it. Here in the states,
    it’s readily available at any pharmacy but I believe Sean needed a doctor
    to prescribe it. Many say it works but has to be used cautiously as it can
    cause skin burning which seems best treated with milk.


  2. Wishing you all the best for the biopsy, Deb. I’ve not felt the fear of post-SCT tests yet, but I can understand it and no doubt will go through similar feelings as time and consultant visits go by. We’re now living with a sword of Damoclese hanging over us, aren’t we? But actually, so is everyone… they are just unaware of it… while we are hyper-aware!!!

    Will that be the first indication of remission for you? My consultant told me he has some patients who are still well 15 years post-transplant… so why not you and me…?!

    I think we have different types of Myeloma. I have Bence Jones, so they’ve been able to tell me that it’s in remission, based on a blood and 24hr urine test at my second appointment after leaving hospital. I dare say they’ll want a biopsy again at some point. 😦


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