[eveParticipant]

Hi Gill

I do feel for you,at least you now know,and the battle begins,we are still waiting on MRI scann date for this Sunday,then hospital appointment for everyday except Thursday,have just worked out the mileage and we will be doing 210 miles to and fro that week.

I do not know which is worst knowing or waiting,Slim seem to take it in his stride,I am the worrier.Eve

[eveParticipant]

HI Dai
I take it the kept you in?????Eve

[eveParticipant]

Sorry Deb,Slims on Velcade but does not suffer neuropathy I do give his legs a good massage,but i suppose you legs are to painful to touch ,I think Dai has a lot of knowledge and scott you could try e mailing one of them

love Eve

[eveParticipant]

here is my memory for today
My mum use to buy every week something for Christmas,tinned fruit and things and put them at the bottom of the wardrobe,we were not allowed to touch them.

I can remember thinking if i made a little whole in the tin,I could drink the juice,and my mum would never know i got the old fashioned can opener and put a tiny whole in all the fruit tins,i just took a mouthful out of each.
Christmas came and when she opened all the fruit it was rotten
She went though my siblings to find the culprit,but never ever thought that i did it.
I admitted it to my siblings 5 years ago,that day they found out I was responsible for lot of things they got the blame for,

They are still speaking to me. Eve

[eveParticipant]

Any one remember green shield stamps,i know we saved books of them,cannot remember were we got them from??? or what they bought.

As you know i come from Liverpool,known as scousers,but did you know there is a stew that they call scouse you had it on Mondays made from left over meat from Sunday,and on Tuesday you had blind scouse which was the same pan of stew with no meat left just gravy and more vegetables added.A piece of meat to feed 9 people lasting 3 days.!!!!

[eveParticipant]

Hi Gina
Your mum must be feeling low just being anaemic ,a blood transfusion should make her feel much better,until they decide treatment.When will you know what comes next Gina.
May be if you do some research to see what other drugs they use for Myeloma it might help,Hope your mum gets some blood as nothing worst than feeling washed out,and let hope the dex gives your mum some energy.
Love Eve:-)

[eveParticipant]

Hi Angela
What i am saying is you cannot second guess without more information,May be the nurse on Ellane on this site might be better at explaining it than I am.
I would hate you to think your father died because he was not well cared for.
I can only tell you after every cycle bloods are checked and any problems show up and your meds are adjusted.
Have you thought about talking to his consultant,
I say this as my husband has had a few hiccups on his journey and it it a big learning curve,many people are starting there journey and they need informed information.
I hope you find the answers you are looking for.Eve

[eveParticipant]

Hi Angela
So very sorry to hear about your father.
It would be very hard to comment on people who are having chemo unless you know what type of chemo your father was on.was he on any special trials.
To be on the intensive chemo he must have been deemed to be fit,as your are boarder line at 65.How many cycles of chemo were given .
DVT are a side effect and can effect any part of the body,although many start in legs,blood clots are something that can develop,infections also.All are life threatening when on chemo.
Not having a lot of information,any body would be second guessing,
I know this must be a terrible shock for you,and you are angry about the way things have turned out,but when you have Myeloma you do not have much choice,you either treat it and buy time with all the dangers, or you do nothing very sad but true.

I am sure your dad would prefer you to mourn him,and not second guess the situation ,My sympathy to you and your family.Eve
At least your father tried to buy time.

[eveParticipant]

Min
Be positive,IT took sometime for Slims infection to be controlled,and Yes it might not have got to this stage if he had listened to you.This just might be the wakeup call Peter needs,Slim does not believe me when i tell him half the things he did( has no memory) so he says 😛
Had to take him to hospital yesterday,local,took skin off arm,caught it in time to stop infection spreading.he said it was just a scratch,but this time he has taken notice of me.Does not seem to understand how vulnerable cancer patients can be!!
Lets hope some good comes out of this:-)eve

[eveParticipant]

Hi Min
I am the youngest of 7 as I have grown older I realise why we were all sent to Sunday school.We lived in a 3 bedroom house with just a tap in the kitchen and outside loo.even if you were dying you were sent to Sunday school,I thought it was for our mortal soul,not for my parents.

Believe it or not Min our tea came from the ships,My dad had a friend who swept the tea that was left on floors in ships and my time as a child was spent sieving this tea to remove,nails,bugs and any other foreign bodies,tea tasted ok,Dripping or margarine never ever butter:-P

[eveParticipant]

Hi Bridget
I can see were you are coming from,and I can understand you superstitions, do not worry you will know when the time is right for you.
It has taken you a few days to tell us,and I do not understand why you posted in this part of the site.
You are worth alot more than this,if you had posted on treatment people would know,what is happening with you,and be there to support you.
Take it one step at a time,you are a strong person,.
When Slim was in hospital a doctor was talking to me about palliative care,and he has just helped me spell that word:-)So be positive,your attitude of mind will take you along way.listen to your heart. Eve

[eveParticipant]

Hi Bridget
I have to say it Bridget your a brave lady,very brave,were an earth do you find all this strength,and courage.It,s not just the illness it is the courage,as you go through each treatment,you manage to find a smile and help other people on this site,all though you are in a great deal of pain yourself.
In you own way you are a fighter,and staying positive will get your through all this,best face on and forward, Love Eve:-)

ps forgot to tell you i live in a mad house as well.keeps you busy.

[eveParticipant]

No Tom have never been told that,I would hit them with my handbag if they
did:-P ,
Tom its just my personality,my sister says " I just tell it the way it is",as I have got older I do try to curb it because the last thing I would do is offend someone.It is also the fact that I am a scouser and they tend to be a bit abrasive.
So now you back i won,t make jokes about your cucumber!!!8-) s

[eveParticipant]

Hi Susannah
I do not know any thing about Bendamustine trials only MX1 trials,I can only go on information I have.This is were Gaya would be very helpful,she fought hard for frontline drugs.
It is postcode lottery,you would think having roughly 3000 patients diagnosed with mm per year they would be trying to sign them all up for trials,because it is in there interest to learn how successful the trials have been.
It all comes down to money,
I am grateful my husband is on trials,because it offered the second line of drugs VELCADE,as CDT has not had good response,this only showed up when second bone marrow taken,i do not think he would have had it taken if he had not been on trials.
My beef is why ,is Velcade only second line drugs,one reason only it is very expensive.Those men in grey suits have alot to answer for.

As Min says individual response to individual patients,treatment should be assessed individual,not in mass.how can they call trial result true if patients start with different levels of myeloma,eg:stage 1 -2-3.

I do not know were you live but it might be worth doing some reseach in to different places were you can get Bendamustine without clinical trials,but you would be taking on another fight you could well do without.
Politics rear there ugly head.
Would be interested how you get on Eve

[eveParticipant]

Hi Min,
You are making me laugh,I know it is not nice,but you know I have been there before,I made up my mind next time it happens I will refuse to take him home.I liked the grassing up bit:-)wicked
I have told Slim I refuse to go though all that again,I felt so guilty I blamed myself for not calling an ambulance sooner.He does not remember much of that time.
Sorry to hear you had problems with your kitchen,you had me laughing again about the smell,that was a good one.
Poor Peter does not know what,s best for him at the moment and your getting,all the back lashing,must have been like that when you were working,we just keep forgiving them.:-P
Hope things are better in a few days love Eve

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