[eveParticipant]

Hi Peggy

Glad to hear you are up and about,sounds if you are feeling a whole lot better,Its amazing how much information you manage to absorb ,and how you get in to routine,so glad your well keep posting Eve

[eveParticipant]

Hi Gill
Its in Side Effects,under Starting Therapy, I missed it completly then when I saw it realised Lara is new to forum,and no one except Bridget had replied ,could not help her just welcome Lara to the site, love Eve

[eveParticipant]

Hi Lara
Just read your post ,do not know how i missed it,!!!!!
Let me welcome you to this site,and the start of your fathers journey!! it,s not all doom and gloom,treat it like a learning curve.:-)
I cannot help you with your problem,but by replying to your post it will take it back up to the top of the section,and someone who can answer your question might see it.( does that make sense ):-P
If you do not get an answer to your question,try e mailing Ellain,I have gone through her,when no one has the answer!!!!
My best wishers to your Dad,It will get easier.Eve

[eveParticipant]

Hi Sarah
I wish I could bottle this!!!,Just think Dai a welsh man saying a scouse is extended family !! LOL.new that would make you laugh Sarah its like comparing Lancashire with Yorkshire LOL.,but Myeloma does not know boundaries:-) .

Be strong Sarah,enjoy this time,not many people have this time,I wish you a good journey,Thinking of you Eve.(((((hug))))))

[eveParticipant]

Hi Gina
Your mum has been here before,something is not right!!! anti inflamitories i always thought was a no no,don,t quote me ask the nurse.I think you remember what Slim went through,and it started with blood pressure going low,Please get in touch with the hospital.If her gp prescribed blood pressure tablets the hospital do not like to undermind gp.
Wish I could be more help,remember a few months back,your mum ended up in hospital,Gina if only for your peace of mind ring the hospital,it does not matter if it,s a false alarm,get advice.
best Wishers Eve

[eveParticipant]

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 self is a big plus,he is a man who loves his land and its fitting that he comes home to enjoy the harvest,enjoy every day.
Keep strong,I will be thinking of you and Gordon. love Eve

[eveParticipant]

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 can give you support,and kind words,and thats all people need sometimes,best wishers Eve

[eveParticipant]

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 in the middle of the night when you cannot sleep.
Things are looking bad,but they can do so much these days,and you have to be strong to fight his corner,a few months ago I could not see Slim getting better,but we have jumped that hurdle and we are getting ready for the next one,so be strong,We are all thinking about you, love eve

[eveParticipant]

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 having sct,and no more chemo.left feeling whole thing has been a waste of time,(move on to next patient).Bloods and zometa next week,have made appointment to see Myeloma 11 trial nurse!!!
Kings will decide on SCT,!!!asked for figures for mortalty rate,success rate no figures,asked for length of remmission,% wise between,non sct and people who have sct no figures,found it very disheartening .
Good to know you are doing well except for a few aches in bones,best wishers Eve

[eveParticipant]

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 going in right direction,then told it has only been going in right direction last 2 months!!!
Consultant then was telling me how Slim was very lucky he did not die felt like saying( hello i was there,)you do not choose a wedding in ITU by choice!
Any way had my moan, Eve

[eveParticipant]

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 sick!!!!,may be after all the money they paid out,they are raking it back by over charging the nhs???
have you any plans to go to France,if you have say bongour for me,would love to be there right now. love Eve

[eveParticipant]

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 holding up a bed,they would soon have you seen too.LOL welcome to reality.:-S
Slim was in his doctors surgery vomiting in his sink,the doctor new he had Myeloma,it still took 10 days for appointment to see consultant,admitted straight away,with hypercalcemia and acute kidney failure.With hindsight I should have taken him straight to A&E and refused to move and screamed and shouted,until they treated him.:-) >:-(
Money and men in grey suits control our hospitals and the only way is to complain to you consultant,he is god in there eyes. best of luck Eve

[eveParticipant]

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

[eveParticipant]

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 to eat healthy,if you have a blip in your treatment the weight will soon drop off,so enjoy eating.;-)
Toms in to cucumbers in a big way he keeps going on ward and upward LOL

[eveParticipant]

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 like us make your own,remember not to rub your injection site as you will bruise,any worries you can use this site for answers.some one is always ahead of you,and you in your turn will be able to help someone behind you.:-)
keep in touch Eve

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