Hi Jean
Slim has a bit of a tummy,otherwise skin and bones,I put it down to his height loss of 4 1/2 inches ,could be wrong but at least he has something to stick his claxane needles into.4 1/2 inches of skin and tissue has to settle some were.
Glad to see everything is going fine with you,I do keep track of you on Facebook,just have not got the energy to concentrate on scrabble but I do miss are games, may be in awhile. Love Eve
Hi Janine and Peter
At least you cannot say your bored with all this,it's coming at you both from all directions:-P told you they are a good bunch on here,and will all help you.
I would take a sheet of paper with questions on,if you do not know what to ask ring Ellen she is a specialised myeloma nurse for number on here.
Helps if you have a small gadget for taping as you will not remember half of what's said,and will only focus on odd things.
Kidneys can regenerate and function near normal,some do some don't,Slim was lucky.
Ask what type of Myeloma you have?
Ask about all new trials as they give you the option sometimes to try new drugs.
A must question to consultant is what would you do,if you were me,look him in the eye,if he blinks a lot he is telling you porkies.:-0
My advice is eat drink and be merry,because you will go off food and drink,so enjoy your favourite food and tipple in moderation,this is a big learning curve, Slim and Eve both send are best wishes.
Hi Maureen
I do not think I would have survived with out this site,so I do understand ,I know some times I come across as someone who is blunt,but anyone and everyone has to soak up all this knowledge about Myeloma,it's a voice and it can alter the way NHS treat Myeloma patients,that is why we do have to support each other.
I do understand your position,as you had a raw deal,and I hope you are taking part in Sara,s questioner about being diagnosed,in the case of Ian it was deplorable and needs to be aired,but in your position you must have a lot on your plate at the moment.
I hold to no religion ,so it would be wasted on me,you make your own luck,and like in every day matters you should be practical and prepare for the future. Love to you both Eve
Hi Andy
Have to say how every one is different with results and general health.
Slims last results taken half way through cycle were
Serum c protein levels 19 should be 10
serum creatinine 141 should be 64-104
WBC 11
HB. 12
Platelets 37
Neut. 1.0
Most of the other results are off the scales,if platelets drop,under 20 it will be the same for Slim,but he does not look ok health wise ,fatigue,!! Lungs,you name it.
We see consultant on Friday plus clinic bloods,lets see what happens.Slim is due another BMB in 2 weeks,only way to tell now how he is,except for big mouth me. Lol 😛
Best wishes Eve
Hi Dai
Thank you very much understanding without the commiserations .
I would like to think over the last two years I have helped and been helped on this roller coaster,as you said not long ago it's time for other people to step up and help the new people coming in this site,and I agree,but the temptation,to impart Slims experience and my little medical knowledge gets the better of me!!:-P and I would like to think over time I have made some people laugh,I do have a black humour.
I would like to say to any one reading this when I said I do not want people's. commiserations,it's because I am unable to cope with them at this time,there tears are like a tap at the moment,and if I am crying I cannot read the comments.
My daughter who lost her child is in a very private invited group with people in the same situation,she has suggested I start one on face book,so that's a thought for the future!! Like the under 50 on here.
I am speaking to Sara for the survey tomorrow,after that I do not know we're my future belongs on Myeloma uk.
I will let you know when I make a decision,my love to you and Janet. Eve
Hi jean
Just a qiuick one,as in patient he will have priority,so hospital is the best place,bed blocking,makes everything go fast.
Hang in there it could be anything,but I would be concerned with pain,and inability to pass urine.
You have a nurse who is on the ball,so worth keeping. Love Eve
Hi Helen
Glad to hear,you Mills and Boon heart is doing fine,as you say having equipment to be able to find these little things that can go wrong,is good, I take it you are at a large hospital.???
Enjoy your holidays,must admit getting envious of you all taking holidays,it looks if a holiday is not to be for us,cannot complain,make do with taking Motorhome down to the beach,if Slim picks up . Love Eve
Hi Carol
This is what we mean when we say a few blips,don,t know what Aussie,s call it.8-)
Carol they treat what every is most important first,and having blood clots with infections in kidneys and lungs are far more important than chemo,they will put you b ack on it as soon as possible:-)
Slim was off chemo for about 4 weeks when he was in ITU,
Listen to your body,keep away from large gathering,s of people,as you want to get back to Aussie as soon as possible,I hope you have family here to look after you and support you,,look after yourself.Love Eve
Hi David
Only just seen this posting,I would take the back of a repeat prescription with you,just in case you loose any!!,then if you have to see a doctor,he knows you are genuine ,and not a drug addict.lol
When we arrived in NZ you have to fill a declaration in,so we filled it in truthfully ,as we were having wheelchair assistance,we were last of flight,because we had declared hill billy heron,plus calxane needles,we had to get it signed off by a senior customs officer,but we did feel we were breaking the law,as the dog came sniffing round,I had enough pills for5 weeks,
They could not do enough for us,an airport official asked me was I happy with service,I said yes,but a little bit disappointed in flight,as Slim although looked normal at the time,could not lift anything into lockers,and there was me 5ft nothing weightXXX,not telling you standing on the seat and swinging from the lockers,not a pretty site.
He told me next time to ask for lifting to lockers.,lesson learned.
David do not be tempted to go to gib or morocco,Gib is being blocked at the moment,and Morocco,guards questionable,depends whether they were paid that month. Have a lovely time.Love Eve
Hi Jackie and Andy
Jackie thank you for replying,it's a sad ending,but if you had no regrets,about your build up to that time,surely you must feel no regrets,this is what I want,no regrets,and Slim and I have the time left to work on that, I need advice on how to make this time important.We are not giving up,just trying to except that time is not on our side any more.Love Eve
Hi Andy
You can make me laugh and cry at the same time,it's a gift use it more often:-) ,
I am with you all the way,attitude will help people through this,Slim has always been a fighter,this is what makes him such a bad patient,stubborn as hell,he has had a bad journey with lots of high,s and lows,when he was in Intensive care,we got married,I have never looked at the pictures,and Slim only looked at them awhile ago,he has no memory at all ,and was amazed,for some reason he thought he was standing up,when we married,he tells me I took advantage of the situation,lol.
I think only a very few people in our position post ,yet this is one of the times you need support,they must look!!! As the figures show.Thank you for being honest and a cyber friend.Love Eve
Hi Marina
One of the reasons he was given paracetamol is it will bring down his temperature , crush them up if you have to and put them in milk!
When people first come home from SCT,one they do not want to go back,two they feel in limbo after all the care,and the person who looks after them worries,this is all normal hospital tell you to ring if you are concerned ,so do not worry about it.
I felt the same as you,worried he was ill!!!,after SCT he was admitted twice,and was back and forth to unit twice a week,we were just unfortunate his platelets were not rising fast.
You can forget about a steak or big meal for some time,small and often is the way,find things he will drink,my husband drank milk,and still does,small glasses so they do not look overwhelming ,and the milk will stay fresh as this weather is not good for milk kept out of fridge.
No one can prepare you for them coming out from SCT it's just a big learning curve. Eve
Hi Garry
Thank you for telling us about Sue,I am having problems just trying to find the words to offer some comfort,my first thoughts were,well Sue is not in any pain now,but it's little comfort to her family,no mother expects to loose a daughter,and a young child left with out a mother.
My best wishes to you all .Love Eve
Hi Marina
Well I do agree with the others!!
When my husband had his SCT they left the line in as platelets were not picking up very fast,it was in for sometime from what I can remember,and he had to have a lot of platelets over a period of time,so do not worry about the line,the hospital or district nurse will flush the line through once a week,but you need to keep your eye on it,any red around area,straight to a doctor.
The last place your husband wants to be is hospital!!,but this time you know what's best for him,get on the phone and explain to them what has gone on.they usually do not let them go unless they have stopped being sick,eating a little and drinking,my husband was good at lying!!!!.
My husband makes a bad patient as well. Eve
Hi Tom
Are you on tablets for it????
Slim never came off anti sickness tablets,because as you know he relapsed 6 months down the line,it takes an awful long time for stomach and bowels to recover,Slim still takes medication for both at times.
Also Slim changed his tablets a number of times as some disagreed with him,your own doctor can sought that one out.
Early days young Tom,just enjoy being out of hospital.Love Eve
Hi. Sue
Thank you for your reply.
I know you both had a very hard time towards the end,specially you coping with the isolation this brings,friends and neighbours not acknowledging your position,because they did not know what to say???
Well I am trying to learn from all this as David said he got the elephant out of the room,and talks about his future death,well I thought I had too!!!! Until this weekend, and a small incident made me realise,that I am slowly watching Slim decline,
He was on the phone to Sky,I have been trying to cancel to no avail,they rang and threatened him with Debt Collects,his reply was : it does not matter as I am dying anyway. It just opened a flood gate within me.
I can laugh now as Andy put it into perspective for me,he uses that one on cold callers.and BT.
It has made me realise I am not handling this very well,and you only have on shot at this,on the practical side,I have a working knowledge,of people dying,plus as you know lost my grandson,but it does not equate.
Being a practical person,I found some small thing like that comment could effect me hard.Love Eve
