Recent smouldering Myeloma diagnosis

Hi Michellemdp,

Welcome to the forum, although I’m really sorry about the circumstances. Whilst my myeloma was symptomatic on diagnosis and so I went straight into treatment, I think I have some experience of what you are going through as I am currently in remission, so I am familiar with the dread of check-ups and wondering whether the myeloma has returned. I think what is good is that you have identified myeloma early, which should put you in good stead for when it does start causing problems, which hopefully won’t be for a long time. But I acknowledge that it would be much better if you didn’t have it at all. You are definitely not alone in your thoughts, and a lot of the feelings in your post I am sure will be very familiar to a lot of myeloma patients. I think what helped me (it took me a while and I am still not 100% perfect at it) was to try to stay in the moment and try not to fast-forward to some imagined future that will most probably be incorrect anyway. I tried to accept that myeloma is now a part of my life and an illness I am going to have to live with, but I won’t allow it to control me or my life. I am still me, I still have my dreams and I will continue to dream them. I can’t predict, nor control, what will happen from a myeloma point of view, but I can control what I am going to do today and if I’m feeling well, myeloma in the future will not control what I do or how I think. Some may call it denial, but I think what has really helped me with the enjoyment of the day to day is to park the myeloma check-ups as something that I have to do at periodic times, but in between, I have trained myself to almost forget that I have myeloma and I won’t allow it to be as all-consuming as it once was.

I hope this helps in some small way.

Greg

Thank you so much for your reply Greg. Your positivity is inspiring. I know this is what I need to do and usually I am quite an optimistic person but I think this threw me a little as I’ve seen my mum go through it all too... what are the chances of me getting it too hey! 
I don’t think the pandemic has help either, it’s just intensified my anxiety. 

So moving forward as long as the test results keep coming back good I can start to rebuild my confidence and get my health back on track. 
just one question, did you get a lot of fatigue or headaches? 
I think those at the moment are the worst symptoms. The fatigue in particular, it’s so hard to overcome some days. 

I do hope you continue to be well Gregg. My mum is also in remission and doing really well. 
I do know there is some really good treatments out there and hopefully one day a cure! 

take care stay safe. X

Hi Michelle,

I’m glad my post helped a little bit. You are spot on about the confidence. It can definitely take a while to build that back up after the shock of a cancer diagnosis. My advice would be to not be too hard on yourself - these things take time and you will get there in the end - like you say, there is lots to be hopeful about with improved treatments and hopefully we can start talking about cure really soon.

Re: symptoms, my main one was that I kept picking up illnesses (eg, coughs, colds, etc). I was working long hours at work so I can’t say that fatigue was a massive issue as I was able to work long hours and I have never really struggled with headaches thankfully. Other than picking up regular infections, night sweats were the other big signal that something wasn’t right - not the sweats you get when you’re a bit warm in bed, these were sweats that would completely drench my clothes and bed sheets. Looking back, that was probably the biggest signal that something wasn’t right. That’s the barometer that I use now. Your body can pick up infections here and there and can be tired and have headaches, but I have learned to trust my body in knowing what is part of normal functioning, and therefore what doesn’t feel normal. This can take some time to rebuild after the diagnosis. If I was in any doubt though, I would definitely talk with the medical teams and get their advice as sometimes that bit of reassurance that what you’re experiencing is completely benign and not related to myeloma can really help set your mind at ease.

All the best 

Greg

Has anyone had the covid vaccine, if so how did it go.

Thank you.

I only see reply on here, how do I post something. 

Hi Eil,

You have posted something. In answer to your question, I have not had the vaccine yet, hopefully having it by mid-Feb as the government said.

If you want to start your own thread, there is a “+” button at the top and if you click that, you will be able to start a new thread.

Hope this helps

Greg