Hi Gill,

I realise and appreciate that the medical staff cant tell you how you are going to react to treatment, everyone, as you say, reacts differently but that is the content of treatment, whereas I am talking about the procedures.

If someone had said 'this is the procedure for each cycle: a,b,c,d,e' and if you react:

i) positively…[Read more]

Hi Helen
Good to know your mum feels a lot better. Its very worrying at the start,but your mum will soon get into the routine of things,do keep posting,it might help your mum to post as well,there is light at the end of the tunnel.
There will always be people who can help you,with any questions, so good luck and keep in touch eve

Hi Gill
Sorry you have to come here too. It is a bomb shell when diagnosed, but as everyone has said this site is wonderfully supportive, and there is always someone who has been through it, going through it or will be joining the journey with you. Ask questions as the hospital and take someone with you who can be your added ears. Let us know how…[Read more]

Hi Helen

Sorry you have had to join this site,but you are welcome.
this is what the site is for to ask question,get support,and rant and rave if you wish.so welcome again to the big learning curve.

Ask your Questions on the other sites as,Re starting a discussion is not were people on this site look very often,you will be picked up ,on…[Read more]

Hi Gill you are on the right site for info and lots of support from people who understand what it feels like At the moment it probably feels overwhelming but as your treatment begins it will all start to make sense You will have a specialist nurse who will be available , usually more so than consultants although a lot of them are very good at…[Read more]

Dai i dont know what to say but agree with the others. I really hope you are ok, what a awful time it is for you. I cant imagine what you are going through but i do hope you start to feel better soon.
My mum starts this treatment anytime now, we are just waiting for the call.
God bless and take care Gina x

Hi Gill

Welcome to the site,Its either you so shocked or it is a relieve that at least you know have a name to your illness,sorry you have to join us.
Ask any questions you need answers for,or thing you do not understand,look on it as a big learning curve.
I wish you a good journey eve

Hi Dai
Sounds if you are going through the mill,so what can i say your knacked through lack of sleep,Let it all out if any body is entitled to blast off its you,think of it as just another hurdle,and if you refuse to jump over it,i,ll bash you with my hand bag 😛
Tomorrow is another day,try to stay positive,do not let your demons rise to the…[Read more]

Hi
So sorry your having such a frustrating time and feeling so low – no surprise you feel so unwell when your on such a demanding treatment regime. Like you, I always feel so less able to cope when my blood count is low. My doctor put me on Aranesp (there are lots of other names for it too) and this did help a great deal – don´t know how…[Read more]

Hi Gill

Truly sorry that you have had the rotten news – you must be shell shocked and everything a blur.
Please take heart – things are moving at an incredible rate in this field and in the almost six years since I was diagnoesd there have been huge steps forward and progress has been incredible.

There are some lovely supportive people on…[Read more]

Hi Helen and Mum

Sorry you are here 🙁 but its best place 😀

I am on Zometa and the first time I had it I had flue like symptoms for a few days (aches and pains in bone structure) but it only was that first time, I now go every four weeks for my infusion and so far tomorrow (thurs) will be my 13th and all is going great.

Good Luck to…[Read more]

Dia

keep on mixing, I am so sorry you have had such side effects lets hope the symtoms get better soon I agree the nursing staff are all about the treatment not you and the effects some times I think we need some pastoral care which is not all that evident thinking of you wishing you a good night sleep
Keep well
Love Jo;-)

Hi
sorry you have to join this site but myeloma uk is the very best place to go for information I agree with Kay take a pen and pad and write down all the questions you want to ask you will always forget to ask something if you dont then always write down the answers so you remember when you get home
Love Jo

Hi Min & Kay,

Thanks for replying an supporting… I am sat at my desk recording and mixing and it has brought me out of myself.8-) I have my laptop on my bedside swing-over table and my desk in the corner of the room… so I haven't got far to go but it does make the difference mentally… even lying on top of the bed makes me feel less…[Read more]

Hi Joanne

I also am sorry you have had to joint this site, but trust me its the best place for help/advice and folk to listen to us when we need a rant.
As Kay says its an individual illness and not one thing suits another.
Take the pen and Paper and make notes its not going to be easy to remember everything, also ask the Consultant to send…[Read more]

I just wanted to let you know my experience too. I was on Myeloma X1 trial and got CDT. It plateaued at 22 after five months and I got SCT arm of the trial. I was taken into hospital and had stem cell harvest only to be told my pps had gone up in a a couple of weeks to 34 (they were only 38 when I first started treatment) so they stopped the…[Read more]

Hi sorry you have to come onto the site. It really is a blow and total disbelief when you are told that you or someone you love have this disease. I was extremely healthy when they picked it up and only had tiredness. I would only suggest that when you see the doctors you have a pen and paper with you and way up the options that you are given.This…[Read more]

Hi Dai
Think it is always good to let off a bit of steam rather than let it go round like a washing machine in our heads. Its enough you are going thru the pain and fatigue without having to listen to your head. Hope you get a little bit of playing. I remember going on your website and listening to your songs it really cheered me up. I have taken…[Read more]

Thank you Mavis… just letting loose a little but yes, my points are valid and it would not take much. BTW, thinking back I can honestly say that I have only seen one Doctor in our very, very busy Day Case Unit in the last four visits… its totally run by the nurses who ratify and conduct all medical procedures without any recourse to people…[Read more]