Post 25 – Incurable?

I read a blog post this week by a very well renowned MM patient. It has confused me a little and how I feel about my myeloma and how how I should feel about my remission. In particular to the phrase ‘incurable’ and whether or not I am in remission or not (officially I have never been in complete remission, but in a ‘Very Good Partial Remission’) 

Many who know me will know that I generally spend my time these days focusing on the positive aspects of my life with myeloma rather than allowing myself to get dragged down by thinking about the negative aspects. When I first started fundraising for Myeloma UK I tended to focus on the fact that myeloma is classed as ‘incurable’. I felt that the only way that I could get people to understand what I was facing, and to contribute to my fundraising efforts, were to explain that I wasn’t expecting to live very long and that my poor family would have to continue with me absent.

But recently I have realised that I don’t want to keep doing that. Our kids are getting older and far more aware of what is going on around them. And if I focus on that negative story, and they happen to stumble across it, how do I explain to them that it isn’t going to be me and that they shouldn’t worry. And to be honest, these days I genuinely believe that whilst myeloma is incurable, that it is only a matter of a few years before it becomes a chronic rather than an incurable condition, and hopefully no more than a decade before they find a longer term solution…perhaps, fingers crossed, a cure. At some stage we will have to explain more to our children than we have to date. Currently they know that;

a) I have myeloma

b) That it means that I have poorly blood and am ill a bit more often than lots of people

c) No more

Rebecca heard from a friend that myeloma is a cancer, but I’m not sure that she really understood what that meant….thank god. I did talk to her, but she was more interested in what we were doing the next day….and I can’t say that I minded that too much. I am in no rush to explain things earlier than I have to do.

So my current focus with fundraising is to tell people how supporting a charity like Myeloma UK can really benefit people and families like us. To tell them that not only does it support us as patients and carers, but that it works tirelessly to make life better for us. The charity are constantly asking themselves whether they are offering enough, what they can do better and what still needs to be done. They put patients at the forefront of everything that they do. And most importantly, in my mind anyway, they work so hard to help formulate trials with drugs companies to offer new options to patients. In fact, not only do they do this, but they work massively hard in negotiating with NICE to ensure that when drugs succeed at the trial stage, that they then are available for patients. This isn’t as easy as it sounds given that many of the myeloma drugs are massively expensive.

So going back to my confusion. This article was by a MM patient about another MM patient…and you can get the link to it here if you actually want to read more. But the general point he was making was that as a myeloma patient you can NEVER be in remission. That you will always have some myeloma cells inside you and that at some point, those cells will choose to rear their ugly head again. Whether it is 6 months post transplant, 6 years or 16 years (if you are really lucky). Now I have stopped correcting people these days about where my myeloma is currently. It is too much like hard work to explain the partial remission and to be honest, most people just want to know that you’re doing ok. They don’t really want to hear the negative side and they think that I’m being pessimistic if I say any of that stuff anyway. But seeing it all in black and white was a bit of an eye opener to me.

As I said, I still believe we are moving away from incurable. I really do. And articles like this, whilst they make me stop, think and have a reality check, also help me to live a little bit more realistically. But they can bring you down to earth with a bit of a bump too.

We have had a tough few weeks recently with me having back pains, light-headedness and various other random and short-lived complaints. I suppose that this in itself ends up making my myeloma feel far more prominent than I normally let it. And also my fundraising has meant it is constantly with us. I love doing my #40challengesb440…..but if I’m really honest, it will be good for us to have another year off once we get to my birthday. A year to just sit back and enjoy our lovely family and friends….and our health.

Not complaining though….just saying :-) 


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