[eveParticipant]

Hi Stephen
Like you style,how about staying alive by the Bee |Gees for you next bit of music.
Its good to see that staff are quick on the ball to relieve any side effects, sweet corn last a few days,must admit its not the nicest of smells.
Carry on with the music.Eve

[eveParticipant]

Well its the early hours of Friday morning,and Slim is wide awake,so I am up,with a nice cup of tea.:-)
NO Platelets this week8-)Monday bloods,Thursday a hospital visit we did not expect,Slim could hardly walk,had to be checked out for DVT,went through GP who sent us to a different hospital.All was ok,
Today it,s bloods nice and early so with a bit of luck,should be in and out,and hope we do not have to go back.
Helen just wish I could see Slim gaining weight:-(
Tom think Slims turning into one only he is skinny and bald,he,s a bit down at the moment,so bad tempered with it,keep telling him it will take time to feel better,with his legs playing up he cannot get out for any length of time,and he is an out door man,hates to be indoors.Love Eve

[eveParticipant]

Hi Its only me,

What can I say,You new it was coming and I hope you were ready to let go.
It still comes with lots of emotions,relief you mum is no longer suffering but you have lost you mum,who was an important person in your life.

My condolences to your Dad sister and yourself,I wish you all well on the next stage of your journey,Love Eve

[eveParticipant]

Hi Sarah

It is a different ball game when its your choice,if chemo is refused then palliative care is next step,then it comes to hospice which has a certain policy concerning care.
IT sounds if Howard has chosen his path.
It must be awful for Gail,I can look at both sides and see merit in both.Eve

[eveParticipant]

Dia LOL still laughing,oops got to go the loo.Eve

[eveParticipant]

Hi All
Can i put my two pence worth in!!!
I can not comment on the treatment because Slim has not had it, but and its a big whopping but.Slim had an anti sickness tablet that caused constipation.So much so .I ended up walking out of the hospital with the biggest carry bag of bowel stuff i have ever seen.
Movicol twice a day Lactulose three 5ml spoonfuls twicw a day and two senna tablets at night and that is one months supply,I think once the bowel has problems you need the movicol to stimulate the bowel.
The worst thing you can do,is sit on the toilet for hours,i know its a horrible feeling knowing you want to go,and scared of getting caught short,but lets face it,its just ….. gloves come in handy.With movicol in time should get the bowel back to normal,if you think about what the chemo does ,plus extra tablets that are great to make you stop feeling sick.Its a wonder they do not supply these things as norm.
Keith for your mouth i would recommend Nystin [spelling]works wonders.Eve

[eveParticipant]

Hi Andy

Well good luck for Friday,either way I think it will be a great relief.You will know what you are fighting so you should be able to take part,and do some research towards that treatment,you have jumped so far ahead with different treatments in so little time.
All treatments need time to work Velcade they say 6 cycles and like to know what is going on after the 3 cycle as in Slims case.He went from 80% plasma Cells to 6% in BM,that was the important marker,as bloods and kappa light chains,were not showing true.
A very good question to ask,Is what would you do if you were in my position,and look your consultant in the eyes.
Love Eve

[eveParticipant]

Dai
I would do it now,but my dead mother in law use to tell people i started the G&T at 10am,but you have no excuse enjoy one then have a snooze,Bridget would be laughing at that, Eve

[eveParticipant]

Hi Dai
Bridget amazed me,as I know from the amount of pain relieve she was on and still in pain,how hard it must have been for her,they gave her another hurdle to jump and she put her self forward.
She had the will to live,thinking always about her daughters and her mum,always there for them,Grandchildren as well,she has left her own goodness behind in them.Also she leaves her partner behind,lets not forget how hard it must be for him.
I will raise a glass to Bridget tonight,and thank her for all her kindness Eve

[eveParticipant]

Hi Everybody
Just got in,I have been down to the sea front walking and thinking about Bridget.
I hope she is there with her family looking on,I hope her daughters are strong.
They say things happen for a reason,and this is one of the times you think life is so unfair,Bridget is no longer in pain and to me this must be the blessing in her passing.
She was well thought of and will be missed,Eve

[eveParticipant]

Well Andy what can I say its almost if I have started a ball rolling,did not mean to just found it strange so many treatment with out real progress or time for progress.

If I was you I would ring up your consultant and ask to see him!!! he should be able to give you time away from the clinic!!!!! don,t go on chance.

Have your list of questions'
1. is why have you been removed from treatments not giving them a chance to work
2 Would you have better treatment on trials.
3 were is the nearest trials to your hospital
4 Would they consider SCT as you stand possible with a back to back SCT>
5 only if you want to know????? how aggressive is my Myeloma.
I think the hardest question is the last one,Slim has never asked and plods on through his treatment,I am not entitled to know his position.

To put it bluntly everyone else knows except the persons it concerns.I do understand. there problem,but I see pity in there faces,and that,s sad.
Roll on BMB and then we will at least know the position.

You need to know the beast you are fighting,to be able to overcome it.Eve

[eveParticipant]

Hi Cinzia
Hello and welcome,
i think like me a lot of people have missed you joining the forum,because unless you have a related condition you tend not to go in to that subject.

My post now is just to say welcome and hope you have a good response.Eve

[eveParticipant]

Hi Helen
Hope you are feeling better,not nice at the best of times,but must be an added worry with Myeloma even when in remission.

I can understand you wanting to get back to normal,and go back to work,there is a nurse on the chemo unit,who has had treatment,her words were[ i just want to be normal],I did not ask much just talked about her lovely curly hair.
As you know there are lots of germs in hospital,so you make sure you are well before you go back. love Eve

[eveParticipant]

Hi to you all
Tina I can only tell it from Slims side,had a few problems with his bladder side,it was an infection,antbiotics given.another side effect way down the list.
I must admit I gave in with Slim at one point tried commode plus bottle,to him it was a no no,I kept telling him be ok once he was feeling better,he was not having any of that.:-P So I changed all my white carpets to wooden floors!!! did the trick.
At home Slim finds it difficult to move fast,but I can always tell when he needs the loo,moves faster!!,we live in a flat,he would never manage time wise if we had stairs. Love Eve

[eveParticipant]

Hi Gail
I am so sorry Gail,you must be beside yourself with worry.
Some times people choose there own fate and it must be awful for you to watch,it does happen some people choose,not to fight.
I can only imagine what it must be like for you as the carer.Howard is a very brave man,his decision must have been hard to not fight and leave his loved one,s before his time.
You have done all you can,his body his life.it,s so sad.
The hospital have to respect his decision,as you said the mental health team says he is of a sound mind.
You know your husband best is there anyone or anything that would give him the will to live??

I can only speak of my husbands experience,he has upto now had over an extra year,and hope to have at least a few more years,and I intend to make the most of every minute,although we live with the knowledge that there is no cure for my husband.

My heart goes out to you and your family. Eve

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