Hi Peggy
just noticed your unfinished post,not that i can help you with side effect as Slim has very little,but can offer you some sympathy as its not very nice when these things are happening,
hope thing are a little bit better Eve
Hi Dai
It all ways seem to start at the weekend,horrible,feel you cannot trouble people,and know you are going to end up in A&E fighting your corner,Slim had bloods taken as par usual,but from getting up knows he is not himself,hospital says he is ok,but cancelled any plans for weekend.doubling fluid intake,ankles BIG,and just not himself.cannot complain has had no great problems with Velcade ,so lets hope it,s a small blip and yours too Dai.love Eve
Hi Everyone
David how about Nosology,meaning the branch of medicine that deals with
classification of diseases
How about for OIL
OLIGARCH
love Eve
Hi Dai and Everyone else
I was not sure were to put this post ,and as this topic is included I thought you might like some % of are problems with meds.
As you know Slim did CDt 6 cycles now Velcade on 4 Cycle.=10 Cycles altogether to date.
Out of 10 cycles we have only had the tablets ON TIME twice making that 20% of the time,on the bad days a wait of 4 hours,and that,s without waiting for your turn for treatment just waiting on pharmacy,and it is not just us,
No one complains and the poor nurses have to take any flack and spend there time ringing up to see were drugs are.
Velcade we have waited upto 2hours past are appointment,so now go in later.
I bit the bullet three weeks ago,calmly asked why departments cannot get organised and co -operate with one another to ensure Velcade,tablets were there on time at beginning of Cycle,guess what that cycle 4 is one of the times when every thing went smoothly
I will let you know if this co-operation between departments continues.Eve
Returned at3 oclock for Velcade and we were out by 3.20.do you think it was something I said?????????????
Hi Debs
We will not be making it tomorrow,left it till last minute,because it means a stay up there or 160 mile around trip,from the coast in Kent and Slim on first week of 4 cycle Velcade.
Been to the hospital this morning,for bloods,and he is just not himself,so tomorrow is out,was looking forward to meeting everybody,but either way with a dog would have been difficult,and now Slim not feeling right,means i will not leave him to go alone,so may be the next one in London,as that is the nearest for us.:-(
Hope you all have a nice day and let us know ,how it goes Love Eve:-)
Hi Elaine
Just popped in to say welcome,I am a carer and do not know how i would have managed without this site and all my cyber friends they have helped me so much through some bad times,so its all been worth while.and you also gain so much knowledge,and helps you to know what is going on in other hospitals.
Also what treatments are available,and any other help that is out there.
Best Wishes Eve
Hi Deedee
Its all a bit mind blowing at the moment for you,but things will settle down,Its hard when they have been so fit,and now they seem so ill.
Thing will get better,and you will find that inner strength that you need.
I find it helps to find out all I can about MM it works for me,when things seem to be heading in the wrong direction,I try to learn everything,and people on here can give you support,we have all been there as carers or patients,it does effect the whole family,but the only people who understand is the people who are living with Myeloma.
Food and fluid is the most important thing,sleep when the body needs it,and be aware of any the symptoms on the card they give you,and do not worry about phoning hospital,my husband was terrible not telling me when he felt ill caused big problems,and he was h e l l to live with on Dex,come to think about it he still is.LOL but he does know better now. EVE
Hi Caz
Just to say welcome,envy your trip to nz,we should have being going this year have a daughter in Mapua.We will get there again was my husband gets remission.8-)
Once you know how much damage to bones there is,you will soon learn to adjust your strength will come back just takes a long time,some people sail through treatment other people have problems,infections and side effects,nothing you cannot get through.
Listen to your body,watch for all the signs of illness and do not be afraid to phone hospital no matter what time it is.I found that the hardest call,feel you are wasting peoples time
Post on here and people can help and support you.:-)
I wish you a good journey Eve
Hi Bridget
Nice to hear from you hoping you are keeping well,and have pain under control:-)
It,s the only way,Otherwise you would just give in,it,s so important to stay positive,just for your own well being,and if you can make people on this site more positive,then it has achieved a good result,and you do this all the time.;-)
We are going in motor home only to Canterbury,decorations and floor laying being done.Slim has 3 app I have 1 app,all at Canterbury,so save the drive:-S
Look after yourself,let us know how you get on with new drugs,hear from me when I get back. Love Eve
Hi Gina Mum and sister
Glad to see you are still holding out:-)
must be hard but try looking at some of the trials,you could always ask for a lower dose of Dex,it would give your mum a bit more energy.
Must be hard maintaining a job,fitting your own family in,then looking after your mum,hope your mum takes advantage of all she is due to make her life a bit easier and your,s also.
True as are jolly friend would say ON ward and upward:-)Love Eve
Hi David
Yes it does touch your heart,I could take you some were in this country, very much the same,my grandson goes to a school in Valance school in Westerham in West Kent.A school for profoundly special needs children the only one in Kent
When you go in there are a mass of wheelchairs with smiling children in them,some can operate a switch some cannot like my grandchild Matty can not,he is reg blind nothing wrong with eyes,but brain nerve connections and he can not talk,but is very intelligent ,he has excellent hearing,so good he jumps if he is surprised,I have never seen so many beautiful children in such a small space
The very first time I went there to watch the christmas play I sat there with tears running down my face,Matty gives us so much joy.He is my first grandchild,and much loved.
These are the cards we have been dealt,and you have to play the best hand
Live life to the full love Eve
Dear Scott
I know,I put weight on all the meals Slim asked for and could not eat,don,t like waste so the dog and I got fat,and Slim got thinner and shorter,
As for drinking, YES guilty,but realised from old,it does not help so try my best to moderate it.( a bottle a day) LOL:-P only kidding but i do understand.:-S
When I was . 30 I had a life changing problem,and I swore then,nothing would ever drag me so low again and I came out of it very strong person.Yes I have times when I am low,and even pop a pill from doctors mainly to keep control of my emotions,but I know,no matter what the future holds that,I can and will get over it.I do believe everyone has a duty to live to the best of there being.Have no faith,just when you see the quality of some lives my grandson for one who has CP,it brings it all home.
Dai will tell me off for this bit!!:-0
I tell myself ,stop weeping,get over yourself and I go out with a big smile on my face,there are people far worst off than us.So thats what I do,and have my moan on here Love Eve:-)
Same here Eve
Hi Everyone
Sometimes you just do not believe what can happen in such a short space of time,I do not know which is worse,1 year or 15 years,It,s never ever going to go away.I suppose we have to draw strength from any remissions and as you say sue,there are good times,
It has made me appreciate Slim more,as for bringing us close,we got married after living together for 30 years plus.It does make you realise what is important,but as I said,guilt is the word,I so miss our life,I know I should just be grateful that after Septic pneumonia big time,we have more time.:-D
Dai it seems like a life time,I know they do not stage MM but Looking back Slim had been having problems for a few years,just put it down to not being as fit as he use to be.He was diving up to 5 years ago.
The MM when found,apart from tumour and back damage,shoulder blades and skull affected also ribs surprisingly not hips but he had one hip replaced,that,s never stopped being painful ,and will not have other one done.
Your right Dai we have to look what we have achieved,as you say if you had not moved to Nottingham,you would have been pushing up the daisies in Wales:-P
So Helen Dai and Sue, I lift my glass to another year.love Eve
Hi Everybody
Nice to hear everyone getting out and about:-)
Jean the pneumonia jab is good ,once in a lifetime but will not protect you from every type:-(
Glad to hear your enjoying Spain,and Ted enjoy your holiday to Cornwall.
Love Eve
