For the first time whilst writing this blog, I’ve held something back over the past couple of months. I haven’t been 100% well. Nothing major, but enough to worry me that it might affect my new role and make me have to rethink the whole thing. But the good news is that it is all ok now
About two months ago, I had been ill with coughs and colds and feeling pretty sick too. I couldn’t work out what was going on but when I went to my monthly hospital appointment, I found out that my neutrophils were down at 0.56, as low as they had been when I first came out of hospital! This basically meant that I had pretty much no immunity and that I was picking up every bug that was going and was unable to fight it when I had got it. What would make someone ‘normal’ feel slightly unwell for a day or two, was making me feel rotten for weeks!
I didn’t worry too much. They gave me a course of antibiotics and 5 days of G-CSF injections which boost the production of stem cells and therefore boost immunity. And they took me off revlimid for 2 weeks. Revlimid is the maintenance therapy that I’m on – they believe that it extends the length of remission so as you can imagine, I want to stay on it as long as possible. But the downside of it, is that it lowers your white blood count making you susceptible to infection. Since my transplant, I’ve always hovered around the ‘critical’ point, but never dipped below so this was a bit of a bolt out of the blue.
Anyway, I left the hospital that day expecting to go back 2 weeks later and find out that I was ok again. But when I went back, despite the injections, I was still below the ideal level at 0.8. I can’t really explain how gutted I was about this. I was so worried that they wouldn’t be able to rectify the situation without taking me off the revlimid. And whilst I knew it was irrational (and probably untrue!), I thought that this was see the beginning of my relapse. This all paired up with the fact that I am due to start my dream job, sent me into a bit of a spin. It all seemed so unfair. They put me back onto the revlimid anyway (along with more injections to boost my immune system and hopefully stop me suffering from a further drop of my white blood cells from the revlimid). But I got ill again…and it all felt so unfair. Luckily my consultant was brilliant (as always!) and just told me to stop taking the revlimid for a few days and to take more antibiotics. And I started to feel better….until I started the revlimid again
So I went to my appointment yesterday half expecting the worst. I was starting to ready myself for having to lower my revlimid dose, or even to stop it. But my levels are back up to 1.5 which is great…..I had a huge smile on my face! It looks like perhaps they’ll keep me on ‘once a week’ injections to try to prevent me becoming neutropenic again, but I can cope with that if it keeps me well. And I get to stay on my current dose of maintenance therapy – long live the remission!
Hopefully this all means that when I start my job next week, I will be as well as any other individual in that office – the last thing I want, is to be a burden to them in any way at all. I had told them that my myeloma did not affect my ability to do the job and I truly believed that, but this illness had started to make me question it. Now I am confident that it will all be ok again.