Dai
Slims writing home about his HL,4 hour job,veins thinning as HL progressed,then getting it round a bend,head honcho called twice,Slim coming up looking like death warmed up,saying he will never never have that done again.( may be that,s why his HL is still in).
I think it does vary from patient to patient,but as Stephen has had one before…[Read more]

Tom
You do not need luck,I can see you standing there with a big red box in front of you.Got to give them an angle,EG terminal cancer,want to take the wife on holiday of a lifetime will donate some money to Myeloma uk for all the good work they do.Can I fill your CV in for you LOL:-P 😉 🙂
I forgot the best bit,good looking guy with a cheeky…[Read more]

Hi Helen
Just to save any mixup its not Kings I am talking about when I talk about 1 designated nurse.I am talking about the south east England corner,Margate,Canterbury and Ashford if the information I was given is correct they only now have ONE designated Myeloma Nurse,use to be 4 and because of cuts it,s down to one. Eve

Hi Tina

A holiday is what you need away from the Myeloma Bubble,Lets hope for 10 days of sunshine and you coming back in the right frame of mind to tackle the next stage.love Eve

Hi Everyone
Amilea in UK first line treatment for people not on trials use to be CTD then SCT or not,then no maintenance!!!!,do not know if its changed but trial people had a lot more options this is why trials are best.

Helen it is finding out information that is my problem,I do try to do as much research as possible,as nice as the nurses are…[Read more]

Hi Andy

So glad to see thing are going looking up,I would go for all three big time, I know even without MM back problems in the low spine,cause a lot of problems so I hope this treatment does the job,and gives you some of your life back.

Hi Mari
Yes they do not hang round at Kings,Slim was due the same ,Hickman line day 1,then other events took over and he came out of hospital.

So glad you are managing that holiday,it will be the best thing in the world to build Stephen up ready for his SCT,and give you a well earned break before you start the next round.

A few months ago…[Read more]

Hi Dai
Have a nice weekend,summer is suppose to be on it,s way;-)Eve

Hi Mike
Just a welcome to a exclusive club,be it that you are a patient carer family or friend.It is mind blowing when you are first told even if you are expecting it,I could tell you not to worry,but you will,your mind will still be awake in the early hours of the morning,but you will over come all this,and find out it,s not the end of the…[Read more]

Hi Alison
Kids are lovely,I could use a few sayings to describe Slim at the moment,but I do not think it would go down well on site plus,I do not think people (except Tom ) get my sense of humour,what I found very funny is my 2 granddaughters came to see Slim,and on the way out,asked there mum could they kiss him,they are 14 and 10??.I thought it…[Read more]

Hi Everyone

Looking back at Slims time on Dex during ctd and velcade,he started with 40 reduced to 20 after pneumonia and blood clots on the lungs.

Dex 40,hell to live with,played tricks with his mind plus hid how ill he was!!!
Dex 20,I had my Slim back,would have liked him with more energy and the will to eat!!!
Keith 4 days on 40 of Dex…[Read more]

Hi Everyone

Well all this is thought provoking,even in the middle of the night or in my case early in the morning:-P
I think you have two different levels of people with Myeloma here!!!!
Dia can I put you in the latter group of a very limited life span!!!{ no offence is intended}:-)
Then Helen who has taken CRD as first line…[Read more]

Hi Everyone
Well I for one am glad that this subject is being openly talked about.
First may i say Amelia on Myeloma Trials which you should find info on this site,after SCT you are randomly picked for maintenance or no maintenance,Helen was luck to be picked.
Helen we need more people like you to get on your soap box,because with it comes…[Read more]

Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.

I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control…[Read more]

Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.

My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a…[Read more]

Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one…[Read more]

Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at…[Read more]

Hi Mari
I know110 for Platelets is low,but Slims have never been above 50,so I have given in worrying when he walks into a door or knocks himself,apart from wrapping him in cotton wool,I cannot do any more,and my attitude is if internal bleeding is the danger,why is no one very concerned.!!!!

I would agree they need to be very stubborn just to…[Read more]

Hi Etta,
I am sorry about your sister,I know a few on here who have had the same thing going on in there lives Jean lost her brother,I lost my Grandson,so we do understand how you feel,myeloma is hard enough without a death of a loved one.So you are entitled to feel low,we can only off sympathy,and a realisation that we do know how you feel Love Eve