Good Luck Min
Wish I could help you more ,no knowledge of treatment as you are ahead of us on this journey,Peter is a fighter and I think this goes a long way,I wish I could say more in words to comfort you,but we all know,these are desperate times,
Too stop my self from loosing the plot,I now resort to popping a pill,tried g&t,not a good idear.stops me loosing my temper with people who tell me everything is going to be ok,nothing is ever going to be ok with this nasty myeloma.we just have to make the best of it,and take what is offered to buy time
Peter being a service man most proberly think,lets stop talking and just get on with it,if anyone has a good chance he has,be strong for him Min,
thinking of you both,eve
Hi Alastair
Well I can tell you its not in South East Kent,Read my previous post it will give the general idea.
If we could manage London I think we would go for that,health wise not advisable for my husband.
Its not so much about the treatment,I think its roughly the same.Myeloma X1 trials are you best hope,if you have not started treatment.
Dai specialist wards!!!! I was told the other day,canterbury has 1 ward between 700,thousand patients with cancer,use to have 2 but instigated chairs for treatment ,fit more in.but you do not realise this till things go wrong they told me septic pneumonia is not directly related to the mm,thats why after itu we had to go on a general ward,>:-(
I think the problem is it is such a complicated cancer,it is not just about cancer,its the related conditions,they work on the bloods,but its the bones that cause the pain,I think if Slim had been in a Specialised hospital his problems,would have been picked up,
Alastair I would say choose your hospital with care,best of luck eve
Hi min
You know how I have been feeling these last few weeks,and you gave me so much hope,it will all seem so different in the morning,it is the night that does this to us,to much time to think,to much to ponder,The morning will bring fresh hope, please be strong,
You told me not to give up on Slim,he is getting stronger,when things look bad we,let so many bad thoughts in,you gave me so much hope please be positive for Peter.
My thought are with you eve
Hi Roberta
I could echo all the things said here,But I think it all depends on the type of person you are.I feel the need to put everything right,it is sometimes impossible.
When there is a tragedy in your life,this is when you find who your friends are,and who needs fair weather friends. As to relatives its a different game,may be they do not realise how unsupportive they are,do you tell them how you are or do you leave your husband to pass the news on,they might think it to upsetting for you? and not know how to approach the subject.I have been on both sides of this loosing a much loved sister in law,and now my husband ill with mm.my family talk to me about it but do not mention the illness to Slim.Its not that they do not care,it is about not knowing what to say to him.
My husbands daughter has not been in touch with us,since January,and we rang her,She does not know here father is so ill,He will not allow me to tell her,he says she is not interested,so he has put down the shutters,I have tried to talk to him,and an argument results,he was taken into itu with septic pneumonia again I asked to let her know, his answer was no nurses said I have to respect his wish!!!!!.The only time we hear from her is when money is involved,and she thinks she is a good christen woman,and because I have no believe I am not!!!
I am angry just like you but it is something you have no control over just accept it for what it is.My husbands says if you cannot change it what is the point of worrying about it,
I hope this might be of some help to you.
My friend Ann took my dog home for 22 days when Slim was in hospital and another friend Jan,came and cleaned all my house up,and has offered to come in every week,so I do not have so much to do.This is friendship at its best,this is were the good things come out of bad things.
my best wishes to you eve
Hi Nicki
I just want to say it is lovely that you posted how well things are going for your husband,it gives everyone a boost.
I look sometimes at so many young people with this horrible myeloma and think how sad,lives not lived,so you post must be such a big boost.
I wish you both a long and happy life. eve
Min I think that is lovely,
The pen often means more than the spoken words,I just wish I had the gift,
I have looked on life as a learning curve,for a long time,I honestly believe,that some of the bad things that have happened in my life,an awful lot of good has come out of it too.
I use my denby arabesk and my crystal cut glasses every day ,and for many years,I realised a house is four walls and a roof,a home is were there is people you love,
My thought for the day there is all ways someone who is worst off than you,it helps me realise how small my problems are,I have been very lucky I met Slim.
thanks again for your thoughts eve
Thanks Dai
Will look at that,Slim goes back on ctd week Tuesday,hope I can fatten him up a bit,they seem keen to put him back on it.I wait and see how he improves.
In need of finding some alternative treatment,
Have you started the music for the lyrics of angels? best wishers eve
hi Everybody
I cannot be much help to you ,only to say weekend or not make that phone call,I have learn,t that you do not hesitate,if in doubt listen to you instincts.
My husband ,has just come out of hospital,They make clinical judgement on a daily bases but at the end of the day you know your partner.
The problem seems to be everyone,reacts different to drugs,once they know the reaction from the patient,its on record and should be easier to get help.
In Kent,your doctor or main contact at hospital,will still refer you to A&E,Then the system can go wrong,as in are case,next time I will stand my ground,listen to your instincts. best wishes eve
Hi Dai
I loved the lyrics ,now we need the music,so enjoyed your last piece,we are not going to let you slip off with any angels Stay with the angels on this site,we need you.:-)
dear Ali
Sorry you have had to start this journey,As time goes by the medical side gets easier to understand,and you will find this site helps with a lot of the general stuff that comes up with mm.,there will be someone ahead of you in this journey,who knows what you are going through,and no matter how good family and friends are,its the person in front of you on this journey,who can give you an answer and also support plus a lot of hope.
Welcome to the club.
My husband Slim.has mm.On myeloma M1 trials,had 3 cycles of chemo,hospitalised with septic pneumonia,plus complications.22 days in hospital but out now.A setback that knocked us backward,but without the help of people on this sight I do not think I could have stayed so strong.
Wishing you well.eve
Hi Everyone,
21 days and Slim has come home,All 9st 8lbs of him,walking on two sticks.but its wonderful ,sleeping a lot food intake has improved also.back to hospital Friday will find out about chemo.
Just so glad to have him home.
A friend came round to help me clean house as 12 to 14 hour day in hospital finished me off,another friend took our dog home,but everything is ship shape now,house clean,dog back,had a sleep with Slim beside me,what more could I ask for.
Thanks again for getting me through this,bad turn my love to you all.eve
Thank you ever one for all your kind thought ,min I do not know what I would have done without all your help,you do tend to forget that people on this
sight have been in your position.
min you gave me hope,Slim is starting to recover its the first day in 21 days that I am not in the hospital by 8-30 am.I am amazed how quickly he has turned round.
I am sorry for not being able to help boost other people these last few weeks,will try to make up for it when I get him home.
Wishing you all kind thoughts.:-)
Hi MIn
Not good min,
I now know why they call those little girls who try to get you walking o/t,they go over the top,left Slim for 4hrs he was due to eat,have cat scan and have a rest period, this ot decided Slim was going to walk,ith zimmer with sticks and do stairs and Slim put on a great act and did the lot only to be exhausted for rest of day.
The results of cat scan are not good they do not understand how he can do so much plus maintain level of oxygen in body,and look good.I keep telling them he use to be a diver and is very good at controlling oxygen output.
Scan shows widespread pulmonary embolism,also lots of cavities on lungs,fungal or bacterial infection possible,plus extensive myelomatous infiltation thoracic vertebrae and ribs multiple compression fractures.The next day up popped the o/t wanting him to walk him again,told the stupid girl to go into file and look at cat scan report.[bar steward]
never came near me could not even look me in the eye.Is it too much to ask people to do there job properly.
I want him home,coming to terms with things.Every time I leave him something happens,eg given wrong meds,not given meds on time,stupid o/t,He is not fit to walk on his own and he thinks he can,just waiting for the fall.Mind not all there,cannot remember things,trying to keep him focused by doing crosswords with him,and watching wildlife on computer,no tvs or radio on ward,no water cooler bring in ice every moring, no freezer only small fridge,for 32 patients ,opened ward again,packing people in.
The only thing you can say about the improvements,is it does not stink of urine any more,twice I have had to find cleaner, to remove blood from bathroom floor before use,emergency bells still not fixed from reporting 8 days ago.to tell you the truth they do not give a sugar.
Off to hospital again now,just rang Slim had to move,at midnight noise with new patient.
keep in touch eve
Hi min
just woke up, thank thank you so much,I need to know there is hope to give him hope,At the moment reading your message you could be talking about Slim I know I have left him tonight wondering if this is the end.The doctors do not know it,his attertude is I have got away with it for 66 years!!!!I suppose,because of his life style he has always said that he never expected to have a long life so from the age of 26 every year extra he lived to the full,[does not suffer fools lightly ]
Thanks again,do not know why I looked at e mails again,but I will sleep ,and go back to that hospital,with the believe that this is not the end,he is a fighter,and he deserves my support.thanks again eve
Hi to you all
Tom you are going to have to tell me how i can do it,because I know I am loosing the plot.
just got back from hospital.Slim had cat scan today,not good news.
Blood clots on lungs,also cavities might be mm or could be tb.my own thoughts are possible asbestos as Slim use to sleep under the piping on board ship as a young marine,Doing test tomorrow for tb.
Just want to get him home,I think he will be more settled and happy at home,mm gone on back burner,lungs now big problem,I do not think they can believehow well he looks with the problem he has,but I know Slim he is putting on a good show,fighting the:'-(all the way.
Going to bed night night and god bless
