Hi Gill

Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well…[Read more]

Hi Graham, I attend the Leicester Royal, obviously have the same consultants as you, attend the same clinics etc. i have found the opposite to you, it is not general policy to keep results from patients. Whichever consultant I see on my three month visits, they swing the computer screen round and freely discuss anything that I want to know, they…[Read more]

Hi Graham.

Well, that sounds totally unacceptable to me. When I see my specialist every 4 months, she knows I’m interested in and understand the bloodtest results and always calls them up on her screen for me to see and discuss.

£10 for each SAR sounds like a bit of a scam to me. I’d certainly kick up a bit if I were you!

Hi Rebecca,

I can’t be doing too badly then because I’ve taken the bike out a few times without too much trouble. I walk our daughter to school daily and back again – although it’s not far and I try to do some of the housework. We are moving house in March so that will be test of stamina I’m sure. Unfortunately our daughter is coming back from…[Read more]

Hi Eve,

One thing I’ve learnt from reading your posts is that you are the one to be obeyed, you are the oracle, the fountain of all knowledge. So I will stop worrying and hang in there for the long term.

Hi Dick

Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.

Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most…[Read more]

Hi Dusk

I knew you would come in on this one. Lol

May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,

I…[Read more]

Hi David

Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus…[Read more]

Hi Angela

We have BUPA and my husband was diagnosed 2006. His consultant did not take private patients and although I tried to encourage Frank to go the private route, (thought he would have more individual attention) he decided to stay with NHS. Although I have had some gripes, Frank is very happy with the route he took and when he has needed…[Read more]

Although going private sounds very nice, from seeing the two in action with cancer related treatment, me with the NHS and my dad with PPP, I’d choose the NHS anyday.

I was overwhelmed with the care I received and drugs were utilised without question or delay when needed. My poor dad on the other hand had delay after delay whilst permission was…[Read more]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact…[Read more]

Hi Kay,

Saying don’t worry is a bit like King Canute telling the waves to go back – it’s not going to happen. However you are here now amongst a wealth of knowledge. I think the important thing is not to bottle it up, talk to people, don’t be by yourself about it. The more that know, the more help you will get. The worrying about every ache, pain…[Read more]

Hi Vicki and Colin I have been insured twice by world first for travel to oz first was only 3 months after stem cell transplant, was under 300 for two of us for 5 weeks cover. And second time they have given us a yearly one even cheaper. Hope this helps regards Etta

Hi Vicki and Colin

I don’t understand what All clear are up to. That’s who we got insured with. Frank did it all, I, thankfully was not involved. I know they were sticky on “do you take powerful painkillers”. Frank doesn’t. His consultant wrote a letter saying about SCT and about tests PET scan and said “no detectable myeloma cells”.he doesn’t…[Read more]

Hi Hilitli

Sorry to hear about your Mom,I can’t add to this although I am on the Velcade injection once per week but have just finished my first four week cycle do am sure you understand for me IRS early day.

Good luck to your Mum on her long journey, I hope it’s a smooth one.

Tom onwards and upwards x

Hi Joe

Just thought I’d say hello and welcome.
If you’ve read my latest post in the General section you’ll know that I had my SCT 2 years ago and I don’t regret it at all.
I was only 49 at the time and apart from the MM, very healthy, so that obviously helped recovery a lot. I’ve had a wonderful 2 years and have packed an awful lot in. Lots of…[Read more]

Hi David.
I have a SSD as my main drive with the operating system on it! Wow the speed of start up and shut down is incredible. No hanging around for 20 mins for it to switch off!
That’s going to be a long job David. I need to get all my photos together they’re spread over old hard drives, DVDs, CDs and memory cards!
Still this weather is making…[Read more]

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to…[Read more]

Hi David.
I can’t use the word remission as I’ve never achieved it. The best I can say is my disease is stable and that seems to work.
I’m busy transferring all my music and DVDs onto my new self assembled computer and that’s taking up a lot of my time. I did think it wouldn’t take long when I started out how wrong was I!

Every days a gift.
And…[Read more]