Confused, Down and unsure…

So things are a bit up in the air at the moment….and anyone who knows me will know that I hate it when life is like that. I am a control freak and there is no doubt about that. I like to know what is going to happen from one week to the next. Hmmm, things couldn’t really be any more different than that nowadays and I’m struggling a bit at the moment. 

Where do I start? I suppose the feeling of slight depression began when I went to hospital a couple of weeks ago. My main readings are great! My paraprotein levels have dropped down from 2 to 1…..originally pre-transplant, they had risen to 50! So there is nothing to be concerned about there…the paraprotein basically is a good indicator of whether or not my myeloma is active, and when it starts to rise again, the consultant will begin to worry! For the first time in months, I wasn’t neutropenic either so I was feeling pretty positive (When you are neutropenic, you aren’t ill, but you are at risk of catching infections). But then came the news that my consultant didn’t want me to continue self-injecting the G-CSF injections that I’d been having to raise my white blood count and prevent neutropenia. This was partially because they’re not great for you in the long run, but also because they made me achy and fluey for 24 hours after I’d had them. But if I just stopped taking the injections, it was strongly believed that I would become neutropenic again as a result of the maintenance therapy that I’m on at the moment, a drug called Revlimid (Lenalidomide).

I’m really lucky to receive revlimid as maintenance therapy as most patients ‘off-trial’ don’t get it, but I got randomised to have it through the Myeloma XI trial that I’m on. And to me it feels very much like a life-line….like without it I might relapse…and relapsing is my worst nightmare and one that I have pretty much banished from my thoughts while everything has been ticking along nicely. So what does my consultant want to do….well she’s now reduced my revlimid to being 10mg two weeks out of four…it used to be three weeks out of four. I have to get my bloods done half way through this cycle at our local hospital, and assuming that they are fine, we carry on with that protocol. But if I’m neutropenic yet again, they will revisit my drug levels again and probably reduce the revlimid even further. Don’t get me wrong…I’m not stupid and I know that the revlimid may not be the reason that I am still in remission. However, I really don’t like the idea of changing anything that is working. So all my fingers and toes are crossed that next week when I get my bloods done, that things will look nicely positive and I can stay on revlimid as it is now.

But my drug situation isn’t the only thing that I am finding hard at the moment. Work is posing a massive challenge. I absolutely love working for the charity I’m working for. They do a brilliant job, are on an exciting journey forward and are a brilliant team of people. But I’m really struggling with the level of flexibility that the role requires and the hours that I need to put in to do the job justice. And with a charity job, especially for a charity as wonderful as this one, you really can’t do a half-hearted attempt at working. The problem for me, is that the work is making me exhausted and stressed…..and I know that stress is a bad thing for myeloma and is more likely to make me relapse. Which ironically makes me more stressed as what happens if I ignore how I feel and get ill! 

I’m talking to them as we speak so they know how I’m feeling and hopefully we’ll come up with a resolution in the next couple of weeks. But I know deep down that I can’t keep things up as they stand at the moment. Fingers crossed we can make it work…..I love working and I love working for them, but the last thing I would want, would be to be a burden to a charity that uses its fundraising for such a good cause. I don’t feel I can expect anything from them, as it takes away from the people that we fundraise for…..sort of defeats the objective!

So watch this space to see what happens moving forwards….I can’t bear the idea of being out of work again as I’ve loved the independence of working and bringing in some money to the house…we’re off to Morocco in August and who know’s if we’d have afforded that without me working. But it isn’t worth getting ill for….

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4 Comments

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4 responses to “Confused, Down and unsure…

  1. Oh Deb, I am confused for you. We all have to live with the fear of relapse and I hope that the reduced dose of revlimid will maintain your remission without causing your low white blood and neutrophil count. Don’t stress about being stressed, I doubt that being stressed will have any negative effect on your disease or remission period but it is certainly not good for your quality of life!
    Wendy xx

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  2. Let’s do an intention that your ‘bosses’ are working with you to come up with a better working solution for your health and their needs allowing you to continue to contribute to the household, and that your CR is not connected to the drugs so you are weaning off them successfully and this IS for the highest and best good of all concerned, so be it and SO IT IS! (Slap hands in a high five and say “WHoooooooooo!”)

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    • Thanks Sandy…they actually have been great so hopefully we can come up with something that works. How are you….you have been very quiet recently and funnily I was starting to get worried about you. Amazing how you can worry about people you only know from online contact! Take care and hands slapped up high! x

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