Hi, my husband was diagnosed 5 weeks ago and you’re right – the roller-coaster of appointments, terminology, drug regime etc etc etc is so overwhelming. Unfortunately I’m not really aware of his blood results, only that the paraproteins were incredibly high (I want to say 90+, but may have got that completely wrong!). Although they practically halved after 4 days of steroids. They used the phrase ‘he is heavily burgeoned’ with 75% of his blood/marrow (?) infected.
I’m sure I’ll get my head around it all and know what questions to ask & what details are important.
I just feel the info given so far has been quite vague and I suppose we’re not knowledgeable enough yet but it’s been great reading all the information and stories on the forum. It’s starting to make a little more sense! 🙂
He’s just started his first cycle of treatment (3 days ago) and our main problem for the last week has been pain management.
He was going to work most days up until 10 days ago, now he can barely get out of bed. The pain is excruciating for him. It’s hard watching a man cry……
Tramadol wasn’t touching the pain and I got an emergency prescription for Oxynorm today – but that hasn’t made any difference. Lying horizontal on the bed is the time he gets any relief. Trying to turn, sit up, stand up etc is practically impossible. Is this amount of pain usual? They said his scans were all fine with no lesions etc showing. He has lost a lot of weight and I’m struggling to get him to eat much at all.
He’ll barely have a few mouthfuls as sitting up is just too painful but he knows he has to eat for his medication.
I’m just concerned something else is wrong or they are missing something. I understand this is a very painful condition but being unable to practically move sounds and feels worrying to me – or is this par for the course and will improve once the treatment kicks in?
I hope this late night ramble makes sense! Any thoughts & advice from the wise & experienced would be really appreciated. 🙂 Thank you! x
