Billy
A number of people on here,had problems with private insurance,one I can think of is Gill,her husband was at deaths door,and insurance still would not pay,I do not know if they ever recieved the insurance. Before he died.
The insurance make it hard to claim,there is only one way to go, Name and Shame to a national paper.Eve
Hi Jane
Only 31 not to bad lol, some one on here use to put Dex tablets in yoghurt might be worth a try..
Hope things go well for you Eve
Hi Peter
I was ging to say that about Tom bu ran out of nerves,he keeps an eye on my post in case I take the mick.lol
Sorry about spelling this I pad has a mind of its own, Eve
Ho Jean
I am so happy for you,they are good bloods,and I am so happy you have a first class consultant who knows there is no way a man who has had a SCT should be waiting three hours in clinic
Tell Frank if you cheese on toast is not good enough,he can make it all the time and give you a rest. love Eve
Only 3.5in one go!!! That's great.
I know you tend to want to get this over and done with,but you are wise to have that holiday . Good luck Eve
Hi Peter
Very good news,you must be feeling on top of the world
Was interesting what you said about not likening alcohols Slim is the same and he loved his wine. He even tried a G&T yet other people enjoy drinks wonder why taste buds do not come back with some people.
I will not take Toms name in vain ,!!! Lol Eve
Hi Jean and also you Frank.
You so look forward to coming home,then it flops and becomes scary,no support .!!!! We all had it Jean,but your an old hand now,Frank will go in for blood checks,any problems, will be picked up only when they are completely happy with him,concerning bloods and platelets,it will become less visits for hospital. The old rules still apply if he gets a temperature. Or is unwell,straight to A&E .
It's easy for me to say,but at the time I was just as scared as you.Sending you the best wishers for a speedy recovery and a good recovery,but do remember it is like major surgery in the bloods and it takes an awful long time to recover.
Love Eve
Hi
I cannot advice you,but I know someone who can,ring the Myeloma Nurses on here,there are also video s in the library part of genuine people who have treatments,when you have two disease s it complicates things.
I will say no one can guarantee what remission. Anyone can get,they can only hope for time,and if doctors valued patients against cost,there would be no treatment .
Sorry I do not know your name.my name is Eve
Hi Maureen
I am not surprised by your story,as Slim and a few others have gone through a similar path,I actually sent a letter to my original doctor asking for an explanation ,thinking he might just have the guts to admit,the mistakes he made,but it was a waste of time.I phoned for a referral ,you need them private or not,another doctor phoned me and asked me to bring Slim in straight away.She examined him and straight away said there is a disease were calcium leaves the bones,then are story began.So you are not alone,the myeloma forum have a campaign going you can send for information pack to give to your doctor.
The problem seems specialist are only special in the field of medican,they qualified in. The sad thing is a simple blood or urine test would have started alarm bells ringing,and that should be done as standard bloods and urine at GP.
Ian would possible not be in the position he is today,no one expects miracles,but you expect doctors to listen and take onboard the condition,when it gets to Ian's stage the pain level must have been awful,a simple cheap ex ray would have shown the growth.
I hope things improve for both of you soon.Love Eve
Hi everyone
Andy I think Velcade is around £ 750 per phial,but the makers of Velcade have some form of agreement that if it does not reduce the Myeloma. by 50 percent the health service do not pay for it plus it is a trial drug unobtainable,as not passed by NICE,,that's the way I read it any way,don,t quote me David. Lol
To give my local hospital a boost,we do see the same one,but its the Myeloma x1 nurses who know the individual person and history,and you can usually go through them,for a lot of things,but its the consultant who decides what test are done.
I have. Always seen one consultant,except when we go to Kings and that's what I call a factory line, lots of patients usually blood test not up although you added an extra 2 hrs befor your appointment,then it,s hello how are you??? That's the question,then you see a glazed look in there eye and it,s by by see you in 6 months,then an expensive journey home.
Although it seems less personal.i could not fault one doctor or nurse concerning high dose chemo harvesting,or the standered of care,excellent ,but the food was uck!!!!
Andy I like that Every Day is a Gift ( and expensive ) made me smile love Eve
Hi David
I see you are quoting me, At the time I ask Slims consultant about possible maintenance ,with Velcade I explained Slim had had CDT then Velcade then SCT and wanted to know if there was the possibility maintenance. As at the moment it is 10 percent in bones. I was just putting a possibility forward rather than possibil round of chemo.????
I thought after 2 years he under stood me,I say this as English might be his second language ,plus doctors tend to use medical language . So I did make allowances for the meeting we had.
I was not prepared for his explanation,but he did say if I thought Velcade was so good,how come it has failed for Slim,I will not repeat what else he said,but he did leave me gobsmacked,my daughter suggested it might be easy to write to him,it will give him time to digest the questions before are next visit,she also offered to come along,if he thinks he has problems with me,he has not met my daughter
It's not a chip of the block,she is the whole block,she has spent 16 years dealing with the medical profession,and does not take prisoners,now Matty is dead she is looking for a project .
The same with Myeloma it's different for everyone. And takes no prisoners
The only difference I can see in America they DNA profile and treat accordingly . Eve
Thank you Andy and Sue
Andy at least we got SCT stage,will be your turn,a doña we hope..xxxxxx
Sue how are you doing,now the rush is over,I hope you are managing to sleep,give yourself time to recover.
I am off today for afternoon tea,( Mother's Day present from one of my daughters ) I have invited Jenny who has become a friend,her husband died of Myeloma a year ago,she has no children so it gives us time to chat without dragging her back in to the Myeloma Bubble.
This is one of the good things that has come out of this illness,so I do hope Sue you reach a point were you can find some goodness out of this Myeloma Bubble. Eve
Hi Helen
Just thinking about you,it's worst second time round.
First time you are just grateful you at last know what is wrong,second time round used up CDT. Plus Velcade ,the options reduced,It is a shock,we thought Slim might get a couple of years,but 10percent in 6 months,that's not a bit in the bum,it's a shark attack.
As I said earlier ,making plans,we are going to make ever day count,and if Slim is kept waiting for hours before he has his treatment,they will have to deal with me,this time I intend to keep a dairy. It started with his full body scan,takes a hour with parking just to get there,after sitting there was told although we had an appointment ,they could not do it,we had to come back the next day !!!.some how after me wanting to know who made a mistake they managed to do it.
This is what I am dreading most of all.
How are you finding the Velcade ,Slim found it easier than CDT. Love Eve
Thanks again everyone
It is nice to have your best wishers.
Tom sold the van today,exchanged it for a smaller one,which will be easier for me,cost me money,but it will be easier to take out for weekends plus the odd weeks ,the other one was made for staying away for long periods, the last thing I want is for Slim to be stuck in doors ,he really is an out door person. So now it is full speed ahead,having breaks between what ever treatment they decide.
Feels better just making decision in stead of waiting around ,although we only had six months,we went to France,went on a cruise and spent 5 weeks in New Zealand, and we don,t intend to sit and wait for the hard times .
I now know how it feels posting bad news,you feel no one needs t know about failing,because we try to support all the people going through treatment and SCT,so it's not good news when it fails.
Helen and Slim started the same time,but Helen got remission after 1st treatment , and they are both out of remission ,so it does seem hard.
Eve
Hi Baba and Jean
We have known for a month now,it is just getting you head round it and getting over the disappointment ,we have both picked are selfs up again,plans changed and ready for the next round,stopped feeling sorry for myself,given myself a kick.(and that's just me) .Slim deals with it differently than me.
Selling large Motorhome,anyone interested!!!,had some wonderful times travelling ,but that's another story.
Babs see you on the 12 you have the appointment. Before us,unable to reply as need you to put e mail on profile,only allowed to go through Myeloma Site,but I am on Facebook,Tom and Jean and a few more on there.
Jet had another SCT because age!!!,Slim will not get offered one plus septic pneumonia damaged lungs,lucky to get first one.
Jean I know I keep telling you I will take my scrabble go,but my mind is not in the right place I have been using I Pad for some time,as have had a bad leg plus frozen shoulder,and sitting for a long period at table is painful.it is getting much better after injection in the joint,so I still might beat you yet as you are going to be so knacked looking after Frank. Lol
I am feeling a lot better about the whole thing,just sharing it. We are not looking at it through rosé coloured glasses we both know roughly what might be on offer in the way of treatment which is Revidimide .unless some trial comes up.we do realise you only roughly get half the time again,So when the experts get together and make a decision amongst themselves,that we do not really have a say in,until they tell us what's on offer,we are left guessing.
Hope I do not sound to bitter. Thanks for your kind thoughts Love Eve
