[johnandjunediamondParticipant]

oh eve,i am so sorry my thoughts are with you, it’s so hard to understand this existance and it’s ceasless attacks on our sanity,the coming mths will be testing as each emotion is trialed to extreme, but i know you are strong and slim wouldnt wish you sadness. take your time love ok!

[johnandjunediamondParticipant]

sorry to here your sad news sarah,
my thought’s and wishe’s for the day’s ahead, the strength will come.
best regard’s,john.

[johnandjunediamondParticipant]

dont worry pat, all will work itself out you concentrate on yourself and stay well!
you could also write down the basics in plain english…..like washing machine settings,
oven setting’s/ basic cooking instructions like potato’s and veg instructions and time’s.
we men all claim to know nothing ( but that’s idolitas )it’s amazing what we pick up but dont say!!
best wishes,john.

[johnandjunediamondParticipant]

hello anita,
amyloidosis is a very rare desease,and you may feel a little isolated in regard’s to
reply’s to your question’s.
there is a ( amyloidosis support group uk ) you could search but it is not as up to date
as it should be, but again down to the rarety of this desease.
however if you scroll part way down the page you will find a short video that helps to
explain how the amyloidosis affects the protien’s in you blood,
if caught early enough it can be stopped with chemo and most organ damage will repair
over time,
sadly june was diagnosed very late and died in nov last year when it attacked her skin
which is extremly rare.
love and best wishe’s.john.

[johnandjunediamondParticipant]

hi joe.
must be a donny lad by the sound’s of thing’s,
let the doctors worry about the bone stuff joe,meanwhile do all you can to protect and care for your kidney’s,plenty of water……doncaster are not that good at giving out info,but press them for regular printed info such as blood result’s,and do try to write down any verbal info you get,a diary is a good start. best regard’s,john.

[johnandjunediamondParticipant]

welcome wendy,
as richard rightly said,it’s not the time to panic,you need to consider what question’s you might need an answer to when you meet your consultant,
ask about your liver & kidney function and anything else on your mind
write them clearly in order and dont allow yourself to forget to ask them all…most can be answered by thier assistant imeadiatly after your appointment ( try to write the answer’s down trust me you will have forgotten most of it in ten minutes as you will be in a bit of a daze )
good advice is to get yourself a decent ( page per day diary ) it’s important to keep your own notes as the shock of this diagnosis will mess with your memory for quite some time,as your mind reprioritises your lifeplan.
eat healthy drink more water and take care of yourself….the drug’s that can halt this desease
are extremly powerfull and will take there own toll on your system so you need to be prepared to fight…..leave all othier things to your family if poss,very best wishes, john.

[johnandjunediamondParticipant]

welcome nikki & kev,
sorry but im cluless ref:- IGM myeloma so cant help you there,you will find that you will get less reply’s when you have a rare & or complicated form of the desease or related condition,please dont be offended it’s just that people tend not to reply if they feel they cannot directly contribute in a positive way.
but you will find we are all high grade moral boosters when you need it.
best regard’s john.

[johnandjunediamondParticipant]

my thought’s are with you san,……sorry for your loss.

[johnandjunediamondParticipant]

hi,chris.
basicly what that mean’s is that you carry the desease,if you are very lucky it
may never evolve into mm.
if not then you at least have the advantage of being in the best possible position to gain quick control,for the time being try not to get too obsessed with it….but do please read thru the forum ( including the tv/video section ) so as to gain a basic knowledge of what you may be up against, meanwhile i wish you the very best of luck,and regard’s, john.

[johnandjunediamondParticipant]

thank you so much for the kind thought's
presently wading thru document's and resolving issue's informing officialdom
also arranging the funeral,the distraction's are however welcome and allowing me to function for the time being, the feeling of support is a source of energy i can tap into when low….thank's

[johnandjunediamondParticipant]

THANK YOU ALL so much for your good wishes,meanwhile i will remain a member i may be able to pass on my experiances to othier's,cheers, J.

[johnandjunediamondParticipant]

im in the same void as yourself at this time sarah, so well aware of your feelings,
keep busy is the only advice i can pass on,please accept my most sincere condolence's.
john.

[johnandjunediamondParticipant]

WELCOME LYNN,
you have youth and strength on your side girl so dont panic!
hoping the treatment gos well for you, j&j 🙂

[johnandjunediamondParticipant]

there are few word's that would help at these sad time's,our love and thought's are with you,j&j

[johnandjunediamondParticipant]

if they are freely giving you detail's greg,that's a good start!!,our hospital it's like drawing teeth,getting anything more than….she's stable/doing better/were not sure what's causing it!!……and definatley frown on the fact that im trying to learn about the desease 🙁 get yourself a pocket diary and keep a record of everything you can,everytime they give you a figure ask what it should be,get drug name's and research them for side effect expectation's,IE:- it helps to understand why youur wife is not quite with it at time's or what is causing the vomiting/diaoreah and such like…make's it less scary if you know what to expect, best wishe's j&j

[Author]

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