I am so sorry that you have had this awful news. I hope this helps. I was diagnosed in 2005 at the age of 50 – then considered quite young for this awful disease. I had my first transplant in February of this year after a year of quite difficult times. Anyway, despite fearing the very worst, and having a fairly worrying and slow recovery time…[Read more]

Hi Dai

This song is great. Makes the idea of a Concert seem real. Any progress on that?

All best wishes.

Mavis

Dear Min

Do hope that Peter improves soon and that he continues to manage to get some sleep in Hospital. I always think if you can sleep it helps.

God bless you both.

Mavis

Hi Keith

Can I join the others in wishing you a good break before your next SCT. Do hope while you are away you can feel like a "normal" person for a few days!

Very best wishes for all the future holds.

Mavis

There is all so a good side for example I changed my gp within the practice because i felt I needed someone who would listen to me.The new gp is a lady and talking to her,she told me on mondays she does her home visits in her own time before she starts surgery,i bet not many gp do that.
When Slim was going to ITU he was rambling on about getting…[Read more]

Hi Eve Jo and Dai your posts just highlight the problems when health professionals become so arrogant it makes them more than negligent bordering on criminally deficient In your grandsons case Eve one woman has ruined his chance of a normal life , you must have been heartbroken and to not admit it was their mistake until the very end is truly…[Read more]

Hi Min
It makes me so mad when I read about some of the things that go on in hospitals,but glad Peter is eating,a good sign. Its all just awaiting game hoping every day he will get a little bit better.
It will get better Min,look at us,2 months on slowly Slim is feeling better every day,and does not remember much of the bad times.At times i…[Read more]

Hello Meika and Christin

Just to say a welcome to you,
May i suggest you look at the post[ a ray of hope ]then go back over the old post,you can do this by clicking on photo.
It might give you some hope and encouragement.
best wishers eve

Hi Sue sorry I cant help with any info on Bendamustine but I just wanted to wish Michael good luck with the trial From my experience I would say you do get very well looked after when you are taking part in a trial Fingers and toes crossed they get his pps down very quickly love Bridget x

Hi Meike so sorry you have found yourself dealing with myeloma but you will find this site a great help for answers but also support for you and Christin as well . I can remember very clearly what a rollercoaster it was when I was first diagnosed but it does get easier as you get used to all the treatmentand life does become more normal. Its good…[Read more]

Hi All

after reading these posts the old program your life in their hands come to mind it makes me shudder when I hear these tales. My GP sent me home to take paracetamol "you have a virus" I collapsed next day my husband took me straight to hospital with double pnuemonia and renal failure. They all seem so callous about it why did some become…[Read more]

Hello Wolf

It seems you have been doing very well on Revlimid and a low dose of DEX I always wonder if we need these massive doses of DEX they seem to give us
did you have a SCT at any time in the last 8 years
thanks for posting
Love Jo 😉

Hello Christin
So sorry to hear about your dad hopefully the hospital will get on top of his pain as you will see from posts on here there are lots of things to help
also the Velcade some people respond quicker than others but if that doesn't work there are are couple more options for him.I had a rash with my initial treatment it turn out to be…[Read more]

Hi
Thought of some more stupid remarks,
When Slim was in A&E,being sent home,I pointed out his bp 60 over 40 told it did not matter!!!!!!
|Fathers Day went to barby,first time out with people for a long time,daughters sil,came over saying Slim you look rearly well,I expected you to be looking,ill and grey looking,did not comment on his 5inch…[Read more]

Hi Min
How are things going with Peter and yourself,is he starting to pick up ?
Have you far to travel to hospital ,It all takes so much energy,It is suppose to be a nice day today,although its raining right now,lets hope the sun comes out,I find things all ways seem a little bit better on sunny days.
This is just to let you know,I am thinking…[Read more]

Hi Min your post just goes to show professionals are just as capable of stupidity as the rest of us!! The scary thing is these people literally have our lives in their hands so I do expect more from them As for the professional arrogance that doctor showed in not considering that just possibly Peter may have myeloma and doing a simple test they…[Read more]

Good luck Angelina glad you have decided what to do,if your sil says anything you tell her straight,she would not be able to walk a mile in your shoes. until you are going through this thing,no one has any understanding how it is.Can I say now you have decided to do this,make sure you put something in your boxes that has John smell on it,sounds…[Read more]

Hi Jo got a whole bag of new painkillers yesterday at clinic , so will have to see if they work !!Hard to know what Revlimid is doing for me as my paraproteins dont tell the true story( little fibbers always read low even when myeloma is on the rampage!) I have to have frquent mri scans to see whats going on. Lucky you werent at clinic yesterday…[Read more]

Hello Bridget

are you ok how did you get on at uch is the revlimid working for you
much love jo xx