[eveParticipant]

Hi Gina
I have to say I do not think I would be waiting 2 weeks for treatment.Your mum must feel they have given up on her,I know i felt like that with Slim at one time.
If you ask to speak to your consultant,they should be able to arrange something even a telephone call,they usually get together as a team to decide treatment,so might be worth phoning up.
Your mum needs a boost she must feel nothing is working,I can only say Gina if you had seen Slim in May this year and you saw him now, the difference is amazing,saying that his MYeloma in his bones has increased!!!!.but the quality of his has improved.
So start planning that wedding,and get your mum involved, Eve

[eveParticipant]

how about

PUSSYFOOT
Thanks Jean,much easier now.

OOT

eVE

[eveParticipant]

Hi Gill
Its all so TERRIFYINGLY lol:-P

GLY

PS Can any one tell me how to get to the top of this list without using the arrow on the right hand side,is there a quick back to start ???????
Love Eve

[eveParticipant]

Well you lazy people
how about RELAXATION

ION

Eve

[eveParticipant]

Hi Sarah
If you live in a detached house go into a room and scream as hard as you can,it does work!!! then some deep breaths,and tell yourself you are not going insane!!!
With all your troubles life is going to go on,things will get better.Eve

[eveParticipant]

Hi Alison
You have joined a good group who are just like you and will be there to support you,and offer wisdom and comfort,and in the middle you will find you will be able to smile laugh and cry.
It,s a bit of a shock to the system I would not have dreamed in a million years of posting on a site like this,but I cannot tell you how much it has given me in support,
So try to give as much as you will receive,there is someone else out there starting there journey,:-)
Welcome to the club Eve

[eveParticipant]

Hi Gina
As you know Slim has been very ill,his weight went down to 63kgs,it is now 66,which is great,do not let them take the easy option unless that is what your mum want,attitude of mind is a great thing ,your mum does not want to be a burden ,she has to find the will to live.
I think you have to ask them straight out about your mums lungs,if you want to know,there does come a point when you feel it,s just another problem.
thats the way we feel about Slims lungs,the damage is there very little we can do about it.Myeloma in soft tissue is known,!!!

I hope she finds that inner strength, my thoughts are with you Eve

[eveParticipant]

Tom
We are lost with out you. eve

[eveParticipant]

Hi
How about

DOMINATRIX

Is that a swear word or a sex word,better watch my knuckles
Slim tells me its a bossy word,

RIX

[eveParticipant]

Hi Bridget
What surprises me Bridget is the turn round of what we were told when we saw consultant,I checked about bone marrow every cycle twice,then yesterday same nurse,said in a few months,that,s why i want it checked out.8cycles,3weeks cycle equals 6 months of treatment,Slims just done 6 months on CDT.
I need to know is this the same for other people in Slims position,up to now we have had some very conflicting information
The reason he is having a MRI scan is I asked if the Myeloma has increased in his bone marrow will the pain he is in be extra damage?.

I know you have a lot of experience with this Bridget,as you said a MRI scan is the only way of monitoring your condition,but when I spoke to consultant I was told it will not tell them what is going on in the marrow!!only the condition of the bones.

I will try to find out more about PET scann that Sharon had.

It all just seems a bit hit and miss to me,with conflicting information at every turn.I think I will have to get in touch with Ellane to find someone
who is in the same position.Sharon is at the moment much the same as Slim but the way the different hospitals monitor it is confusing.

Hope your not in to much pain Bridget,and hope they can sought it out soon
Love Eve

[eveParticipant]

Hi Sharon
Slim seems to be in the same situation as you,blood and urine are showing him going in to plateau ,but showing 80% in bones,on 2 cycle of Velcade,went to hospital yesterday,things have changed again,nurse now says will not do bone marrow until near end of cycle!!!.I asked how are they going to check how disease is progressing???? as it seems silly to go through 8 cycles and not know if it is working or not!!!!
No reply ?"only I will ask consultant"
Sharon ,Slims on Velcade with Cyclophosphamide and Dexmethasone on Trials MX1.2 weeks on 1 week off.injection 2.3 twice a week.
CDT not successful so next route VCD,no PET scann mentioned,but MRI scan next week.
Not due to see consultant until October!!!
What has been your hospital regime??????
Do you feel it is being successful????

Love Eve

[eveParticipant]

Hi Sarah

It doesn,t just rain it pours as the saying goes,and its raining on you,put that brolly up and protect yourself,you don,t want to catch anything,!!!!

Ask yourself why your MIL is phoning you and not Gordon,s siblings the reason being she feels she can relate to you,and because she see,s you as a strong person who is coping so well.:-(

Make some space for yourself Sarah try not to get angry with her,how about eg: O dear,or Yes i understand,you can get away with it on the phone.
Come away and feel you have done your good deed for the day,Gordon would want that, words said in haste:-) are often regretted after.Love Eve

[eveParticipant]

Hi Tom
Must admit you do seem well looked after:-)I think Slims consultant takes one look at me,and thinks she,s going to start asking questions:-P
Went to hospital today,bloods and treatment ,arrived 9 oclock bloods,1 0clock for treatment Slim had treatment at 3.30,left 4 oclock.in all treatment is 30 min top.with travelling 9 hours total.:-|
Slim will not see his consultant until October,his words i am sure the nursing team will tell me if there are any problems>:-(
Slim is well in himself at the moment,so hours of sitting on chairs,he can cope with,managed to get 9 appointments down to 6 appointments in one week:-/
How you keep managing to keep smiling through all these treatments amaze me:-) Love Eve

[eveParticipant]

Hi Min
Just come on to tell you,that you will be in my thoughts tomorrow,I hope you have a good celebration of Peter,s life,It is going to be hard for you,as you had no time to prepare yourself,IF Peter had to die in hospital ,Icould not think of a better place to die,I think ITU staff are wonderful people,different from the general wards.

We will be here for you also Sarah and will try to help you all we can,

Love Eve
Sarah have just read your post,Once upon a time I thought the tears would never stop,but they do it just takes time, Eve

[eveParticipant]

Hi Bridget
Have to say Bridget how much i admire you,good job its not me who has this illness I am a coward when it comes to pain.
Wishing you well for tomorrow.Eve

[Author]

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