Hi Maureen,
I spend more hours in than I like,so have made big adjustments to my life style,to keep Slim interested in what is going on in the world,I get him to try to do some research into things,for example told him we needed new car,for mobility scooter,asked him to research it.keeps him occupied plus looking to the future ,
Just thought I would pop in to give you some new ideas,Slim is in hospital again,was in over night for platelets on Saturday,came home Sunday,bloods taken Monday,had platelets Tuesday,Ambulance job Wednesday,rang him this morning,he sounds much better,so life is full on at this moment,and I am suppose to collect this new car on Friday!!!!! So much for doing research,so if you go along a route of research with Ian,expect to throw money at it,in the end.love Eve
Hi Marie
I just want to give you a little thought,!!!
If you worry about tomorrow you will not enjoy today.
Hold on to it, Eve
Hi Iiiona
Just a welcome to the site,you are doing all the right things learning as much as you can,hard to take in at first,but do not worry,after awhile it becomes easier.
When people are first diagnosed they tend to be a little bit confused,this is normal,you dad will just want to get on with it as you say,I always go in with my husband,and at times when he is in hospital make sure I am there for the doctors rounds and if I miss it,I see the sister to clarify things.
It is a shock to watch some one shrinking before your eyes,my husband ex marine use to be 6ft 1 and weight 13 stone,he is now 5 ft 8 inches and this morning weighed in at 64.5 Kilos,so do not be to alarmed at weight loss,but when your Dad is hungry get him to eat,plus meals small and often,and fluid is important,if he does not like water,anything he will drink,very important to flush the kidneys out.
What type of myeloma does dad have???? CDT is standed treatment so will leave Revilimid for another occation,when he has his first infusion of Zometa,watch out dor flue like symptoms,good idea to keep a chart on a daily bases then you can tell what days he has good days or bad.helps to keep up with there mood,or dexitude as some people call it.
Good luck ask anything you need I am sure people will be on to welcome you.Eve
Hi Maureen
how are things going!!:-) one day at a time and deep breathing!!!, it is a long time to be in hospital, so adjustments will not come easy, I have to fight Slim to get him to go to hospital>:-( we have the rows so in that you are not alone, took me awhile yesterday to convince Slim he had to be checked over and had to go to A&E. The tears and frustration of the whole episode wore me out, but I was right his platelets were 5.so kept in and platelets sent from London.I know he will eventually say he is sorry for giving me such a hard time, but it breaks your heart when it happens, so some times you have to stand firm, because in there heart they could not manage with out you.
Can I just ask Helen, did you enjoy your holiday, was it all you expected:-P
love to you both Eve
Hi All
My Saga so far,Slim is out of hospital ,not great but doing ok having GCSF injections on M-W – F ,took him for blood test locally today,will know if GCSF injections has increased his blood levels,plus will know if potassium is any better:-0
Well I am refusing to stand still in this Myeloma Bubble,have bought another car big enough to fit,a scooter or wheelchair plus Oscar my dog,who,s not long for this world:-( plus shopping,just got to get use to manual controls again:-P
This is what I hate about the Myeloma Bubble puts you off making decisions!!!!,I dither a lot when it comes to putting my hand in my pocket,but it's done now,so mobility scooter here we come,I am hoping Slim will be feeling a lot better on his week off,and we have no more mishaps ,I dread that A&E department and it always seems to happen at weekends!!!:'-(
I have felt sorry for the staff on A&E but getting patients out of A&E and on to appropriate wards takes far to long,specially when the person has been allocated the bed!!!!:-S
I wonder why all hospitals do not have units were patients at risk are red marked to go straight to appropriate unit!!!!
We have no choice it's A&E!!!!!,so we bed block A&E seems wrong to me.!!!Eve
Hi David
I would do a lot of research before making a decision to have a SCT. It is not just about fitness,it's about what type of myeloma you have plus is it aggressive ,some are harder to contain than others,for example Slim has bence jones Kappa light chains,IGg.although not rare as some kappa light chains are the problem,he has added complications that the consultant tells me I should not worry about!!!,He did not recommend SCT,but said go and see the experts,who thought the process was not a problem for him.
It came back six months after the 100 days completion !!!in theory it means no more remission,as you usually get half the time again,his immune system is poor as he has had CDT then CDV 12 cycles !!! Then SCT no treatment for 6 months now on CDR and if that works will have maintinance until it stops working,in the mean time CDR is ravaging his body.
This is a man who was a marine for 22 years,never ill,never cost the national health a penny,never had a prescription until he was over 60!! Then it was statins to keep the doctor happy,biggest mistake he made,as we blamed them for making him feel sick!!! We now believe Myeloma started around then,but was never picked up,.
So David you have to ask yourself ,should you take a chance,with no promises!!! Or try to hold the disease at bay with maintenance !!! If only we had a crystal ball!!!.Eve
Hi Maureen
I hate to say it but start the way you mean to go on, you will feel guilty at times, but it is your life too!!!
They become so dependent on you, plus Ian has been a long time in hospital, it is hard.
I take Slim out practically ever day, even when its the last thing he wants to do, and he walks first holding on to his wheelchair then I push the rest of the way, it is better than just sitting in doors.
I do hope things work out for you.love Eve
Hi Fiona
I am sorry to here your news, it really hits home after going through a SCT, I know its hard but you will come to terms with the disappointment, this is were you need to take deep breaths when you find yourself thinking about how unfair it all is:-S
try to remain positive it just might stay at 5 percent, they tend to start treatment again when its over 10 plus other factors, Slims reached 30 percent, before they started treatment,
if Phillip is not on treatment at the moment, would you consider useing Curcumi tablets, it cannot do any harm if he is not on treatment, reading the myeloma beacon, a number of people think the tablets help, .
as for allo transplant cannot help, I know a few on here have had them, try Jet I think she has, if you do not get any reply, s on allo, send her an e mail.
I know you both must be gutted, its a horrible position to find yourselves in, my best wishers to you both.love Eve
Hi Maureen
Well this has been a long time coming,must be an emotional moment for you both:-)
One day at a time,has to be the answer,I hope you both have a long remission ,and planning ahead,make the most of what ever time you have, I think Jets quote it's not about surviving the storm,but learning to dance in the rain is very apt.Eve
Hi Dick
You should do what Dai does ,look round for a little old lady or men,and go and stand by them lol,or get a dog!! Eve
Hi Oliver,s
There are world wide trials for Myeloma,and as Nepal is considered to be a state by the Chinese ,is there no in let that way,might be worth asking Ellen is there any contacts through the Myeloma World with contacts to China to be treated.
You do not say,how long your moth in law was diagnosed plus how she is affected so it's hard to make a comment,new treatment is very expensive if you have to pay for it,and way beyond the reach of most people,living in your were you are you must realise that.May I suggest you look in the Myeloma Site all the information is there for you to read,plus down load.Eve
Hi SP
Welcome to the forum,plus I am sorry to hear about your Dad,no one should live with this illness or watch an illness for half his life as you have done:-P
What did stand out about your post,is your offer to help,but as you say as a child,you did not understand most of the treatment,but I think this site can help you understand things that you closed the door on many years ago,but saying that you were just a small child who looked on as the grown ups coped with it,Myeloma now has a book for children to explain why Mum or Dad is Living with Myeloma,next we need one for Grandchildren 🙂
I do think maybe it's you who is looking for answers,either way you are very welcome,there are lots of parents on here who have young children,and want there children's world not to be about the Myeloma illness,I do not know if that's a good thing,but parents strive to keep there children's childhood normal,but I think sometimes we forget that death is normal too.
So SP I hope you find what ever you are looking for.Eve
Hi Roz
Really nice of you to look in,and to know that life goes on,no matter how hard it is,does the garden still look the same??
Three years is not along time plus the fact it was Christmas,keep your independence as long as you can ,Slims looking at disability scooters to give him a bit more independence from me,but there are so many of them,will have to make are minds up soon,
Good to hear you so cheerful,I have not even thought about Christmas,I hope the future ones are better than the last three,because life does go on,and as Andy would say its a gift. Love Eve
Hi Rebecca
Thank you for the name,just about to order Slims pills from GP so that has come in handy,to think I have put up with it for over 2 years,plus poor Slim found it embarrassing if he was out.I will also give it to that young doctor next time I see her. Thanks again Eve
Hi Karen
Glad to know that blip is over,and I hope you have a strong lock on that cupboard 😉 😀 🙂 Love Eve
