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!!