Lost…

Hi Ema21 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlanderand I help out around our blood cancer groups. I noticed your post had not received a reply so thought I would drop you a line.

I don’t have Myeloma but was diagnosed way back in 1999 with a rare incurable but treatable type of NHL Stage 4a so in some way I understand this journey rather well unfortunately.

Great that your partner is having a face to face appointment, a good sign that appointments are opening up again and a great opportunity to ask questions. So help him start that list of questions now in preparation.

Yes, if things were very urgent then they would move appointments forward - got the T shirt on that one.

Lets look for some of the group members to pick up on your post and for them to give you some first hand experiences.

Always around to chat.

Hi Thehighlander thank you so much for your reply and sorry for my late response.

My partner has been having telephone consultations since COVID but before that would take blood and then have a talk face to face. 
He was/is being seen every 3mths …his appointment was meant to be on the 30th Dec but got moved to 8th Dec…once again I’m thinking had it been extremely urgent it would be a lot sooner (partner seems to think that it’s due to the time of year, as it was supposed to be before New Year’s Eve, and that’s why they have changed it slightly).

I know that my partner hasn’t been actually diagnosed with myeloma but paraproteins are going up steadily ..I’m guessing next step may be biopsy to see any bone involvement.

I think that my partner only realised things today when he went to get his third vaccination…he thought it was the booster and due to this age but when he was told it was due to a weakened immune system and someone that was identified as needing it.

Im just hoping it either never develops to myeloma or at least that it’s smouldering and takes many years to progress (I’m pretty much sure they will be saying he is smouldering in Dec).

So sorry to babble on..the only way I’m managing to deal with how scared I am to lose him and of this journey is by reading anything positive that I can.

thank you again for your reply xx

Hi again and good to hear from you. This is a good place ‘babble in’ you will find coming into the community helps you unpack all the stuff you are carrying in your invisible rusk-sack you got (unknowingly) when your partner journey started.

There can be a denial at times, a sense of “surly not, they can’t be looking at this?”…. but getting the 3rd jab does say he is identified as at risk.

Lets see what his next appointment says. For the first 14 years before I needed full on treatment for my NHL I was having clinics every 4 months and there was always one just before Christmas, most were ok but some did highlight treatment that had to start after Christmas but this is life living with an incurable condition.

Although I have a completely different, very rare and hard to treat blood cancer my journey has had some challenges (see my profile) but I am still here doing great so there is lots of hope out there ((hugs))

Hi Ema21. Im sending you lots of hugs. Living with uncertainty is not easy.  My  husband and I both live with cancer. He was diagnosed with multiple myeloma almost 4 years ago. After his initial treatment and a stem cell transplant, he is in remission...now almost 3 years. Like your partner his paraproteins have started to rise however his is well, happy with no issues with kidneys/ lungs etc. I think what I'm trying to say is attitude is so important. He knows at some point he will need more treatment but he is here now and making the best of it!  So hang in there and think of the good stuff!

Thank you so much for replying  , how amazing to hear that your husband is still in remission almost 3yrs on. It’s reading stuff like this that helps me try and keep some sort of positivity even if I do know that not all cases are the same. I have to admit that I panicked and was acting like he would not be around in the next year..I can’t say my partner was impressed with all my negativity.

My partner also has no problems with kidneys, calcium etc it’s just the paraproteins that we know are slowly rising (I’m guessing bone involvement will be checked soon).

May I ask how high your husbands numbers were when they decided on treatment and whether there was anything else involved at the time such as bones, kidneys etc ?

Thank you again..I definitely agree that attitude is important!! Wishing you and your husband all the best xx

Hi again Ema21. His initial level was 36. At that time he had fractured a small bone in his spine, felt tired and was picking up a few infections so they started treatment right away. After treatment his levels plateaued at around 14. He stayed there for ages but is now creeping up and is currently at 24. His consultant is still happy. He gets his next bloods on November 12th. All his organs are fine. Current treatments are just great with lots of new developments happening all the time. Really good your partner is so positive.  I think it is worse for the other person. I try to keep things very normal...Covid has not helped. Looking forward to happy days ahead.