Newby Online

Hi Marie,

It is nice to meet you, although I do wish it was under better circumstances. Did you manage to get given a date today for SCT? I often think the uncertainty is worse than the knowing so hopefully you’ve got some news today to give you something to work towards going forward. 

And the kick up the bum is definitely needed sometimes. But so too is being kind to yourself - this is not a path any of us would want to have taken and it’s entirely reasonable to struggle with it sometimes. Here’s hoping you’re feeling a bit better today.

All the very best

Greg

Hi Marie I’m a bit of a newbie myself to all this… but you only have to do it once and off you go!!!    I am a bit in the same situation as you. I was diagnosed May 2020 and like yourself the SCT habeen delayed due to Covid. I have just finished 2 cycles of oral Chemo yesterday because during the wait for SCT my myeloma became active again. I will know on Wednesday If it has helped to control e disease.  I hope you get good news about your transplant and please let us all know how you are doing xxxx PS. I will post what my outcome is on Wednesday

Oh Gregg what’s happened to all these wee crossed fingers in my post to Marie what have I done wrong? Should we not use emojis?    How do I just add a post without replying?   Thank you

Hi Greg

No date given.  The consultant still can't commit to a date as the Covid numbers are still rising.  Now tho I'm having my transplant CNS phoning me every month to keep me in the loop as I've had a moan saying I don't know what is going on and I think I need to.  Oh well...

I find I'm giving myself a few kicks just lately but I'm feeling ok today thanks.  

Thanks Greg xx

Hey Marden. 

Firstly, good luck for tomorrow. 

I've been very lucky as my VTD has put me in good remission, well that's what I keep being told.  As I said to Greg, no news about the transplant as the numbers are too high so once again, I'm waiting.  To be perfectly honest, I can't see it being this year at all.  Oh well, life on hold for a bit longer I guess .

Speak soon xx

Hi Marie,

Sorry to e-meet you under such circumstances. 
i really hope you got your SCT and just wanted to say keep fighting and being your positive self! I can’t imagine how hard it is.

 My boyfriend just hit 2 years post stem cell but his bloods are showing signs of the myeloma becoming active again. He is the most amazing positive person with such inner strength that I truly admire.. 
He has days where, as he puts it, he’s just fed up. But he always says to me I’ll pick myself back up tomorrow. And it sounds like that’s what you are doing too. 

Crossing everything for a good outcome for you.. 
You are obviously a strong person with a great attitude, keep going and we’ll be thinking of you.

xx

Hiya Nip75

Thanks for your kind words. 

My SCT is still postponed.  the consultant wants Covid numbers to be 20000 or less, like that's going to happen

That's terrible news about your boyfriend, I'm really sorry to read that.  It appears that this bloomin' thing doesn't go does it?  What's his next line of treatment?

I'm feeling let down by the whole system at the moment,  like your boyf, I'm fed up, sorry...  

I really hope everything goes  well for him.  Sending you both hugs xx

Same here, I run out of positivity sometimes.  This is especially true when I haven't had enough sleep, gotta keep going though.  A good partner is worth their weight in gold.

Do we ever get a good night sleep anymore? haha

They are worth their weight in gold as Nip 75 is proving

Hiya

Im so sorry to hear this. You must feel so let down and frustrated and angry! 
When is this going to stop affecting treatment and diagnosis? So horrible.
Gosh. Nothing anyone can say, just try to stay positive.

I hope you have good support around you.
Sending loads of positive thoughts your way. 

Susie (Nip75)
xxxx