Dai
I have thought about it Dai,do you remember my old post[can I have a moan]that other eve ranted and raved,had high blood pressure,needed a g&t to calm down,everything was so inefficient,time wasted,and do not get me wrong Dai it still is,but it has become the norm,and I have got use to it,we still wait hours for tablets,we have appointments at 4 and nothing happens to till5 all of this still goes on.Wasting hours sitting round hospitals,not nice at all.
The Institutionalised carer Eve is more placid,blood pressure going down,gin bottle full.[saves money:-P]and now concentrates on things she can do something about:-)
I might not win the war but i can choose my battles,number one is because my doctor failed to diagnose Slims condition.my battle is to make my surgery aware of Myeloma big time,a worthy cause don,t you think?
Then I will take on the poor conditions at the hospital.Slim spent 9 days in itu excellent care,then13 days on a ward,that was so bad he says he will never go in there again,
best Wishers Eve
Dai
Love the song ,it,s lovely,glad to here your feeling better after your poo problems:-) ,Its nice to wake up in the morning and read your post brings a smile to my face
Angelina.have been wondering what was happening with you and John,not a good time for you,glad things are improving,Slim and I laugh about him seeing long legs in riding boots walking on top of the curtains in hospital,still insist they seemed so real.
Jo happy birthday [belated]
eve
hi Gina
Hope you mums out and is on the mend,:-)
MOnday,Tuesday and Wednesday at doctors,no infection,but blood counts done,changed doctor in practice,feel someone is listening to me at last,
Slims gone from one extreme to another from D&V and general feeling ill and BP low.Now feels much better,but no bowel movements since Sunday,been dosing up on Lactulose,still no sign,you watch it always happens on weekends:-P
Will be watching him,as just finished Dex.Hospital on Monday for bloods,then Wednesday for infusion and tablets.
My daughter told me I would become a institutionalised carer over a period of time,because of the amount of time I spend at doctors and hospital,and she was right,I no long get angry at people not doing there job properly,things not being done on time,its become the norm.I was talking to her yesterday,and she said welcome to the club mum,It made me realise,this must be a condition well recognised within the health service.I have heard the expression concerning old people going into homes.So if anybody ask me in future I am an Institutionalised carer:-( May be that is why sometimes I feel no one is listening, best Wishers to your mum
Hi Gina
Consultants often have brains but no common sense,sad but true.:-P
Glad to here your mums on the mend,and I hope the treatment goes well.
Been to doctors this morning,looks if Slim has infection,just waiting on results.should know by 5 this evening.
best wishes eve
So sorry Bridget
It might not have been his choice,but at least he did not die,without any body being able to say good bye,and you must draw comfort from that.
It is not very nice to know the powers that be can decide where your last days are spent!!!
Thinking of you in this sad time eve
Hi Everybody
Just had to tell you,my husband say,s the amount of tablets are a meal in it,s self:-P eve
Hi Bridget
Sorry to hear your news,It is sad,Usually when no more can be done,you see the Mac Milan nurse and talk about were you,would like to go.If he cannot come home,try for hospice they are wonderful places,so under rated.
I am a great believer in people do not die until they are ready,you still might have time to arrange it all .My thoughts are with you and your family
love eve
Hi Jollyroger and Chrissie
If its any help to you,I will tell you,I will tell you about my husband,
66 years of age fit and young looking,6ft 1 and 14 stone,4 cycle of ctd.now 5ft 8 and weights 9st 8lb.looks 20 years older.Had septic pnuemonia not pretty,but he is alive and improving every day although slowly.
It hard to cope with,I thought I was going to loose him,the people on this sight made me realise,I am not alone,a lot of them have been there before me,and are still here years later.So do not give up hope!!!
The one thing I will say,he should not be in pain,have your own doctor come out,it could be bone pain or infection,you do not say were it is?
You do not say if he is having Zometa Infusions for bone pain,this is a must.He should not be suffering pain
Eating and drinking is hard if you feel ill,bridget is right small amounts,see your doctor,get district nurse involved,my husband lived on eggs,scrabbled,boiled,any form,soaked them in butter and cream,only thing he could eat,7 up drinks is the latest he is putting on weight,and starting to feel better,some thing i thought would not happen,he told me he thought it was the end,
There is light at the end of the dark tunnel keep on this sight people will help you,do not be afraid to ask questions.
Ellain is a good source of information,she will talk to you on the phone or e mail her. best wishers eve
hi Jollyroger
Yep, your in shock mode,We have all been there.One minute they are fit next minute seriously ill.I kept telling people he,s so fit!!!!!thats my husband by the way,lovely man than he is:-)
Sorry about your mum,it is very early days,t would be stupid of me to tell you not to worry,one bit of advice I can give you is,start learning all you can about Myeloma the more you know the easier it is to make decisions.
Your mum will need a great deal of support,I do not think anybody can do this on there own,Also you might want to check out hospitals near you.Some hospitals offer Myeloma trials.
This is a good sight for help advice and support,good luck eve
Hi Min
Hope things are working out for you,
Thinking about Peter and you wishing every thing goes well' eve
Hi Gina
Sorry to hear about your mum,you must be so worried,Low BP is a sign of infection,read my bit on bp.Slims infection was left to long,it seems if they have caught your mums in good time,you must have a good doctor.
I know you are worried,but fluids and antibiotics is the answer,through a drip because it works faster.do not worry if your mum is not herself,lack of fluids and infection,is not nice,once they have infection under control you should see an improvement,If you are not happy ask for cat scan to be done,shows any problems with lungs,as your mum is out of breath,but I am sure they will do one,to be on the save side.
I know were you are Gina,so you have a moan any time you want,:-)
If you are not happy with the way things are going make a fuss,you have to do what you think is best for your mum.
Keep us posted eve
Keep us posted and wishing you mum a speedy recovery eve
Hi Gill
I was thinking about you the other day,Its amazing the way you begin to worry when people do not post.Glad to here things are going well for you,
You never know France might be on the cards yet
wishing you well eve
Hi Vicki
What good advice you have just received,could not give you any more. Dai has a way with words,Bridget is always a comfort,and Tom a never ending soughs of laughter.Just what you need at this moment.:-)
Welcome to the journey,We are all ahead of you on this journey,I am a carer to my husband.Some times I loose the plot,I will not say it is easy some one described it as a roller coaster,
Good luck eve
Hi Sarah
found your happy happy day
Now thats what I call clever it was on page 11 of off topic.
I do not know how it happened ?
Love to you eve
Hi Marian
The myeloma x1 trials are for patients who have not had chemo.
You do not get choice of branch you go on name fed into computer my husband got ctd side other side is rcd'
1 one or two possible chemo potions
2 one or two consolidation options
3 one or two possible maintenance treatment options.
You can come off the trials if you are not happy.and opt for normal treatment,there is a news item on this forum about findings of the trials,but to early to say if its any better than normal treatment,look up Paris Meeting in news section.
info@ukcrn.org.uk email or http://www.ukcrc.org will give you info on clinical trials
this is some thing that only your dad can decide,but it helps to be informed before taking that step at the end of the it is his life.
You will read lots of different viewsmake a list of questions to ask.
eg.1 ask for all blood reports
2 reorts on mri,bone scan,cat scan
3 ask what sought of mm it is,there are different soughts
4 ask about any tumours or lesions,or how much bone damage there is
They will not be able to give you a time limit but do you want to know.
you will lean a lot as time goes on,I would have a good look at the hospital your dad is going to,because at some stage he will go in,find out about the wards he could possible go to.see what they are like.
I have tried to write this as not to influence you one way or other,
has he got to make a decide straight away,ask for more details
they usually have you in for bloods then you start chemo a few days later
they have lots of forms for you to sign,and my husband started dex before trials as you have to build up on steroids
we had to make a very quick decision because Slim was not well at all,you will get a lot of help on this site ,your are going to have times when things seem so bad,but there is always someone a head of your dad on this journey I hope this is useful eve:-)
