Post 20: Paranoid City

Anyone who has myeloma probably understands exactly where I am coming from with this title. In fact, probably anyone who has suffered from a serious illness or cancer understands.

As I say so often, my myeloma, touch wood, doesn’t seem to be aggressive. I am very lucky. I know that I am likely to get lots of warning before I fully relapse. A bit of time to get my head around it. But that said, I have still spent the last week feeling nervous. I have been living in paranoid city.

A week or so back, I mentioned on my Facebook page to friends and family that I was exhausted. My bloods had all come back fine from my hospital visit a matter of days beforehand, but I had spent a week or so feeling like I was exhausted as soon as I got up in the morning, and exhausted as soon as I allowed myself to feel it in the evening too….I quite easily could have gone back to bed…in fact I did one day! The rational person in me said that I hadn’t had enough early nights, that I am running round like a headless chicken trying to do these challenges whilst now also doing all the cleaning and ironing in the house (since I gave up work), taking on extra things at school, etc etc. The irrational person in me knew I hadn’t felt like this since I was fresh out of my Stem Cell Transplant, knew that extreme exhaustion is a key sign of cancer, and had it fresh in my head that I had recently had a conversation with my consultant about the fact there is a small chance that revlimid can cause secondary cancers. With some bowel issues too, and the fact that my mum had bowel cancer a few years back, I was becoming worried to say the least. But saying out loud that everything was fine. Because that’s what you do.

And then on Friday, I suddenly developed a back pain in my lower back. Again, the rational part of me was pretty sure that it was muscular. I think I know what bone pain will feel like when I get it. This didn’t feel like that. I should have been fine. But the irrational part of me was saying that there was no reason that I had this pain, that you can get bone damage with myeloma without having a high paraprotein (even though it is REALLY rare!) and that could this with the tiredness be a sign that I was relapsing…before my 40th Birthday!

Before people worry, I am 99.5% certain that none of this is related to my myeloma, cancer or some serious illness.

But that 0.5% is slightly worrying me in that slightly mental way. And no-one, not even the doctors can stop me from worrying. I can only talk as a myeloma patient, but with bone pain being one of the key symptoms of disease progression, you start to read into every little ache that you develop. When I get a cold, I worry that I am neutropenic and going to get really ill. And when I’m tired, I worry that this awful cancer might be trying to fight back.

So, what I need now is for the back pain and the tiredness to show some improvement. I went to netball tonight. Mad I know. But it was our last match and I wanted to try. The last few days have shown that being active is better than being sat on a sofa. And netball hasn’t made it worse or better. I had really expected that I might have to stop after one quarter, but it didn’t seem to impact the pain at all. Weird. And even now I have finished, it isn’t worse and it isn’t better. I’m not sure if that is good or bad. Something else to worry about perhaps….in that paranoid world that I now live in!!

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) 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 :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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2 Responses to Post 20: Paranoid City

  1. I hope the pain improves, but your thoughts are exactly the same ones that I get! Trying not to read something into everything.. sometimes easier said than done! Interesting though, I mentioned the tiredness to my consultant, I call it hitting the wall, very weird feeling, jet lag sensation. Apparently HDC can bring on menopause early and muck up hormones, brilliant! A year after SCT she would expect less symptoms and we should explore other avenues. So hormone checks it is. I suppose I’m still trying to be a full time working super mum, and don’t want to give in.
    At least I don’t have the stress of Sam’s homework this week whilst he’s in France, but I’m still worrying LOL


  2. Paranoid City is right. Paranoid over this rash, paranoid over this headache, paranoid over the stitch in my shoulder. And the exaustion…it really is something that only cancer patients can understand. I actually spoke with my Oncologist about it yesterday. She said that for many, it akes up to a year after a SCT to get your energy back. Many people never get back the last 20%, or so. I’m sure your fears are unfounded, but I’ll send up a prayer, non the less. Good luck to you!


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