Thank you every one for your postings, dai your description of the photo of your relatives, all those yaers ago was lovley. i am sitting here with gordon in bed feeling that it is all happening to someone else.
with love sarah xx

Hi Sarah
Thinking of you today,as every one on this sight is,many because we know some were down the line it is going to be one of us,so sad that it has come around so fast.we all know what a roller coast of a ride this is and i do not think anyone is ever prepared for the future.
On the plus side you are getting Gordon home,and that in it,s…[Read more]

hi bridget

so pleased your ankels have decided to return to you have alovley drug free holiday
with love sarah

thank you all my cyber friends. gordon home tomorrow no more treatment his kidneys are failing as is his liver, my living room has a bed for him i am in total shock. we are in the middle of an amazing harvest with gordon not helping. life is too unfair.

my good wishes to all of you i cannot sat keep taking the pills they dont f……………..…[Read more]

Hi Amelia
Your posting was near midnight,and I can sympathise how shocked and worried you must have felt,it is very hard when things start to go wrong,and by nature you must worry about it all starting over again.make sure you keep posting ,i often wish Slim was one of the lucky ones who sail through to SCT.

I cannot answer your questions,but…[Read more]

Hi Sarah
Sorry things seem so down at this moment,Sarah go and see your doctor,all the worry tears and upset is taking it,s toll on you.Get your emotions under control even if it means popping pills it will put you in a better frame of mind,it is so hard when you cannot see any light at the end of the tunnel,and the demons always seem to come out…[Read more]

Hi Carol
My husband is on Myeloma11 trials started February on ctd arm,intense pathway,got septic pneumonia in April,spent 22 days in hospital,started chemo again on less steroids,because of damage to lungs,just finishing 6 cycle,had meeting with consultant last week,no positive outcome.
left not knowing what is going to happen,talked about not…[Read more]

Hi All

Gordon now vwry sick the myeloma has decided to attack his liver, he has yellow whites instesd of white, i thought i had lost him yesterday so much pain a chest infection his protin levele have come down to 96 from 102 some improvment.

How many tears can one person cry.

sarah

I looked up the article that Min mentioned in the Daily Mail. It was interesting, but I was amazed at one of the comments made it seemed, to me, quite vitriolic. I did not realise that you can comment on articles shown on line. I wonder if they are monitored.

As an aside before I had even started to cook the aforementioned chicken etc. Stephen…[Read more]

Hi Dai

I am gobsmacked by your treatment!! we all pay for treatment through our taxes the medics are all paid by us the arrogance of some medics drive me mad. We had one in king,s he thought nothing of letting a door smack into me he was far to much up his bottom to see a lowley terrified wife whose husband was having a bone marrow…[Read more]

Hi
Looks if Apprehensive was the right mood for me,came away feeling what a waste of time,and lots of conflicting information,when I asked for statics ,information not forth coming,on another point told bone marrow results had not improved,asked % wise damage,did not have that info but file was on desk!!!.Told all the way through everything…[Read more]

Hi Gill nice to see Stephen has got over this hurdle,it,s a roller coaster ride,all the time,I just wish it would stop for a little while.
Did not see the article you mentioned but don,t you think it is strange how much it has increased in price over 50 years,£2100,cannot see them 50 years ago paying a high price to stop pregnant women feeling…[Read more]

Hi Dai
The problem is all bookings go through,a format you have to be seen with in so many days,the request is a piece of paper marked urgent just like all the other pieces of paper,this is what is happening all over the country.If the test is in high demand,they cannot cope with this demand because of staff shortage.if you were in hospital and…[Read more]

Hi Dai
The main thing Dai is you are having the treatment ,the injections,a scan will show how the leg is doing,so try to have agood weekend,massage does help easy the pain,i spend a lot of time on Slims legs,as it help circulation ,so it is worth a try,complains some times that i am heavy handed!!!.:-P
love Eve

Hi Ivan
I cannot tell you much about alternative treatment,there are lots out there,Took me all my time to get Slim to eat at one stage,drinking water is very important as it helps the kidneys flush through,your taste buds will change from,month to month.Slims always been a wine drinker,cannot stand the stuff now:-)(more for me):-P
My advice is…[Read more]

Hi Ivan
Eve again,your on ctd,remember to take DEX in the morning,and Thalidomide last thing of a night ,but I am sure they warned you about that!!! some people get mood swings on DEX someone coined the phase Dexattude,the wife will get use to it:-P
It will not take long to adjust to everything,a chart is helpful some hospitals supply them or…[Read more]

Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year…[Read more]

Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.

Yes you are having a bad time,and trying to look after two kids…[Read more]