Hi Dai

Well you are doing well and am sure you and Janet are well pleased you can now have and do visits :-D.
Am well sure your gonna crack it this time and to help you my fingers are well crossed 😎 , its good to see you getting a chance and hope that something else is on the use list soon.

Stay Well My Friend and am sure summer is just…[Read more]

Hi Maureen

Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.

Wishing you well and it's good to know you have some support . Love Eve

Dear David

Your posting jogged my memory one we have stayed in the Union Jack Club,did not realise it still existed ,mine was no honey moon, ( dirty weekend) springs to mind,still waiting on honeymoon,Slims not a great one for surprises his excuse is I always find out about them!!! Two a few years ago we spent time looking for Slims fathers…[Read more]

Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .

When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here…[Read more]

Dear Dai

I am so happy for you and Janet,I can almost see that big grin on your face.

Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before…[Read more]

Hi Eve and you all

Eve "Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions."

I did and the reason is I knew it wasn't a bruised rib nor a pulled Muscle as I have had both of those many a time 🙁 (rough pubs and a cheeky grin dunt help…[Read more]

Hello Eva

I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service…[Read more]

Hi Tom

Trials offer availability to drugs, that are many times not available under the NHS.
I do not know how researchers work, it would be nice to have some explanation on there work but I do not think that is the issue here.

The criteria for a lot of trials is based around new patients, patients who have not had treatment,as time goes…[Read more]

Hi Everyone
Well the patten is there failer in the GP. Surgeries,what can we do about it?? How can we change it??? Because it is costing lives and costing the NHS a lot of money to give the patient extra life. . I do not believe as individuals we can do anything about the GP.!!!
I tried and failed,lip service springs to mind.I took Myeloma…[Read more]

Hi Dai

Well you new I would not be able to resist your charms lol (no problems Janet)

I will do my best to put it in some form of order!!!

First Ali,s Revidimide ,the doctor answered her question " if it was your mother" I believe that doctor did the best for patient,but you have to ask yourselves how many doctors would be thinking the…[Read more]

Hi Everyone

Interesting reading different diagnosis,which makes the difference between damage and no damage!!!
Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions.

Tom M. I agree completely with you ,you do have to be pro active,in many…[Read more]

Dear Hawkeye

I am so sorry your Mum has passed away, condolence to you and your Mums Family and friends.
Just remember the good time before MM came through the door.

Tom xx

Hi Maureen

Well I was told I had a pulled muscle or a bruised rib when I went to GP, and before I left her I had another Dr brought into the room as I wanted. Second opinion as I knew it want one of those.

And after a bit of a fall out with both Drs I was given a chest X-ray , and as they say the rest is history.

Good Luck with it all…[Read more]

Hi Maureen

I do not know how your husband was diagnosed!! So impossible to comment except to say it usually begins with GP, I wrote to my original GP,asking questions wanting answers and I stated clearly no further action would be taken as I understood in general they do not consider Myeloma they consider back problems.

My most important…[Read more]

Hi Everyone

On reading all comments about maintenance ,I would like to add mine.

As people know Slim only got six months after 100 daysSCT .he was randomised. No maintenance . He had complete remission ,I do wonder if he had maintenance would he have got longer????.his general health,cough colds infection is excellent,and his bloods have…[Read more]

Andy and Steph

Am sure it was a great service, and am pleased He had a good send off.
Thanks for posting this Andy.

RIP Keith sadly missed

Hi Ali and you all

Well I had CTD then onto SCT and now sit here in remission so I cant help here Ali apart from saying, I have done and will do anything to kick this MM into remission, I also remember at the start of the MM discussions that I was told I Might Just Might get a secondary cancer 🙁 But I and my young bride Took it on the chin…[Read more]

Hi Mandy

Sorry for the late Poste re your first 🙁 I must have somehow missed it :-S

But I am pleased the Op went well, I understand the Kyphoplasty is pretty good and am pleased it works for you.

As for the hair loss well am a mere Male Mandy and nearly 58 so it didn't bother me in 2009, am sure you will look beautiful when you lose…[Read more]

Hi Dai

Well you are wrong about one thing,I am not sorry I asked!!! I hope you have a really good summer,I know how much I miss about our life before MM took its toll and living on memories is not the real thing,2. 1/2 years for us,with six months remission when Slim was not great is not enough. You are a lot longer and like us whole routine…[Read more]

Hi Dai

How are things going!!! 10 days is a long time when you are waiting to see what results you will get from GCSF,do you feel good in yourself !!! Are you able to enjoy some free time away from medication!!

Spring is late this year,but it is lovely to see the blossom and flowers in bloom,so looking forward to the heavy smell of the…[Read more]