Hi Maureen saw the registrar and she was happy with franks bloods. The MRI results were not back (he got it last Wednesday) she said that in most cases it’s a good thing as if there was something wrong the report would come up fast. She said she would phoe with the results as we are booked to go away next Thursday and I want the results before I…[Read more]

It’s all happening rather quickly. We got the call to go in this afternoon. It’s better than hanging around wondering! It looks like a bank holiday weekend in hospital for M.

Thanks Tom.

We’ll probably be a bit less anxious once we know when this is all starting.  It should be next week but the consultant needed to organise BMB, picc line fitting and a bed before he could confirm admission date.

The positives are that it should be a fairly intense but short period of treatment and a fairly rapid progression to…[Read more]

Great news Maureen. Always boosting to read. Glad you had a nice break. We are odd to consultant tomorrow. Really hate it. Always scared of what she will say
Take care
Jean x

Hi

I would agree with Rebecca,I think it is very important to know at least the basics in terms of bloods and results of test,so this has been my job as a carer,but saying that I do not always tell Slim the whole facts unless he ask me.

As time goes on other factors come in to play,that may effect your body,in Slims case it was a blocked artery…[Read more]

Golf then! ….Hope you have a lovely break
Helen

Hi Rebecca
I’ve not heard that but it’s a possibility, my consultant is thinking I’m really only responding to the steroids :(, hence the rapid drops and quick return. Hey oh it’s just wait and see! I went from 690 to 60 in one cycle and was down to 12 after 3 months. This time it was 155 to 40 in one go! The ratio has never been right until…[Read more]

Darlington? Do you have any plans to go any where else? You could have a trip to Richmond or Northallerton for lunch.
Helen

Hi Ali
That’s all right then! I’m afraid that I’ve become a lot more ‘blunt’ recently …. I used to be fairly tactless, but now it’s total!…… I blame the disease!! Has your mum heard anything yet?

Hi Mavis good to see you are still in remission. I only just requested early retirement, it hasn’t happened yet, I’m hoping to go another few…[Read more]

Hi DickB
Sorry your results aren’t as good as you’d have hoped, but the advice you have had so far sounds reasonable.
And Rebecca… I too have no M spike, only IGA lambda light chains, when I was diagnosed they were at 690 only but I was dreadfully anaemic with 40% myeloma on bmb.
My response to induction treatment was quick and I went into SCT…[Read more]

Hi Ali,

My husband had a plasmacytoma last year on his C6/C7 vertebrae. It caused the vertebrae to collapse and compressed his spinal cord. Surgery was the first step (twice – front and back), to stabilise the spine. The surgeon said he “scooped out lots of gunk” but at the time we didn’t know what it was. He was even referred to a tropical…[Read more]

Hi Izzie
First time I’ve been called a couch potato!
But yes moving helps a lot but when you can’t stand on your feet without it feeling like you are walking on marbles it is very difficult.
I worked full time after my relapse until I’d finished the 4th cycle of Velcade twice a week, then the dose was reduced to once a week but I found the…[Read more]

Hi Izzie
The pain from peripheral neuropathy is horrendous! I found I had to keep my feet up and rest my legs a lot of the time and took all the painkillers and the psychotropics all the time.
Good luck with the SCT
Helen

Hi Poppy
If it were me I would do as Sarah just said and ask the nurses, listen to what they say and ask what they would do if it were their Gran. Then I think I’d bring my holiday forward and go anyway…infections are very unpredictable but when your immune system is failing then they are even more unpredictable.. That way you might get some…[Read more]

Hi Poppy,

I’m so sorry to hear how unwell your gran is. It must be a very worrying and stressful time for you. Do you have a contact number for the nurses who are coming out to your gran? It might be worth trying to talk to one of them to see what they think about you travelling home in 8 days. They won’t be able to give you any exact information…[Read more]

Hi Poppy

Fiona is right,take the time now,as time goes on your gran will not be able to enjoy your company.
People choose there own time to die,so no one can give you a time limit.
As long as your gran is comfortable and not in distress or pain,it will not matter if you are on holiday or not.
It’s a sad fact of life that many older people are not…[Read more]

Hi Ali
I’m sorry, was I too blunt with my post? Rereading it it seems very bald, though I’m not sure how else to say it! It still might be nothing but needs checking out thoroughly. It’s good that you’ve not been driven by the numbers too, I’ve not asked for mine for a while, I’m just enjoying life between appointments.
You will be happy to hear…[Read more]

tom
how dare you party with out me How is the velcade treating you or is it those pesky steroids have they given you a date for the SCT is is still wait and see love to Elaine
Big hugs jo xx

Hello Andy EVE and david

my every sympathy to you all Andy you hospital sounds on top of things thank goodness cannot say the same of yours Eve and David its a big worry to me what sort of care I will get if I need the hospital again it was pretty good last time but who knows who you will
get another time it seems a bit of a lottery get well…[Read more]