Hi Dick
its good to see acceptance of your situation,its also nice to learn the way they handle it in other countries,you cannot beat the Germans for work ethics.
I do find sometimes there sense of humour deserts them:-P
It was interesting about the enzymes is this the norm or unusual as I can see it on the blood charts but Slims have always been in range:-)
I hope moving on does not mean leaving the site,if it does you are going to look in and lets us know how you are:-/
Good Luck either way.Eve
Hi Richie
Hello and welcome,I am a carer to my husband,and yes it is a massive shock when this all starts,but as time goes on your mum and you will reach an acceptance that she has Myeloma.:-S
There is no normal process,its a illness that is very individual and often starts differently for lots of people.
May I advice you to get in touch with the Myeloma nurse Ellen or Maggie phone up speak to them,they will send you lots of booklets ,at first it will seem hard to take in all the medical terms,but in time it will become the norm,anything you do not understand this friendly bunch on here can help you with,patients carers and family,they are all on this site.
It is a roller coaster journey,with lots of highs and lows depending were you are on it,my husband is 2 1/2 years down the line.some people are years down the line,:-P
its not all doom and gloom,your mum will need a lot of support,many people work as well as going through treatment,some find it easy,some have problems,keep your mum positive,Myeloma is incurable but treatable,if you look round the site,andy just got back from Greece,Babs from America,we went to NZ France and on a cruise so everything is doable.
I hope this gives you some insight.Eve
Hi Everyone
Vicky in the old days saying bloody would not have,allowed you to post your comment,I got caught all the time,kept looking at post and thought what the hell had I said?:-/ (Hell) was the no no word,.So you would have been damned for bloody. You naughty girl.:-S
Helen how can you be so cruel me an Alfa female,lol,truthfully it is interesting how we see are selfs,and how other people see us, I just see myself as a person who wants the best possible care fore her husband.:-)
Well Pauline you must have read all the comment?,To your own self be true,that is the question,To be or not to be.Eve
Hi Athony or is it Tony!
Just to say good luck with your treatment,I do no think being on trials make that much difference now as second line treatment is Velcade and third line is Rividimid ,short form fot the 3 treatments are CDT CDV and CDR,the only difference it would have made is more bloods more BMB,so you are not missing anything.
My husband was on trials but was randermised for CDT anyway,had CDV next,then SCT now starting CDR off trials,
Any questions just ask,someone on here will be able to help??
Good Luck Tony,hope you do not have many side effects. Eve
Hi Maureen
It is one constant battle after another,and the wheels turn ever so slow:-S .i can understand your frustration,how long has Ian been in hospital now ????,
There is such a thing as an institutionalised patient,even carer,s they coined the phase,for people who were going to end up spending more time in hospitals than home,basically it means you stop complaining after a certain length of time. I hope I am right about your character,do not sit back and accept what is going on.
I do not know about Scotland but I do know about my own health authority,they are having staffing problems on a large scale,they are upsetting staff,who are voting with there feet,politics have entered hospitals,departments and patients are suffering,agencies are filling the gaps,some services are being put into doctors surgeries,all with the general public not having the full picture,its called progress,there only take on public opinion is an opinion poll survey with people not knowing the extent of what is going on.
I feel so sorry for the dedicated staff and patients who are taking the brunt of these changers,but when you hear about directors attitudes, it use to be consultants who were thought of as Gods,but now men in grey suits have taken there place.
I think Ian should have better treatment,I wish you luck. Love Eve
Hi Rebecca
Well on a personal level,I try not to think that Slim will die or he might just survive 2 years!!!
As for insurance there aim is to fleece you not give you money. Eve
Hi Young Tom
Well lets hope those injections get your bloods jumping up,the pain will be worth it,if you get as many cells out as possible.
Slim was on the machine for two days,with two train journeys of 86 miles,did not have any pain,was just a sleeping body going through the motions,thought he would do it in one day,but not to be!!!
Good luck young Tom,Eve
Hi Pauline and Everyone else
Helen has put a new perspective on consultations!!!
Do you think it's an Alfa female thing,? As carers we natural want the best for are partners,so when we see are other half struggling with Myeloma plus what it does to body and brain,is it only Alfa females who then feel the need to control the situation?
Slim and I spoke about it from the start,he decided he would just like to concentrate on going through treatment and I would learn all I could.the pact was made,the consultant informed in writing,are journey began. We keep the children informed of any important news,and we talk about any issues that arise from this. Close friends I feel who understand the situation also.the rest of the world Slimis fine,because most people relatives and friends do not want to know,it's dreaded Cancer god forbid you upset there day:-)
As for Alfa female being a patient,well Helen I now see a new perspective !!;-) it is the other side of the coin,but if I was the male in question or the hubby,I do not know if I could cope with it.
On a personal level I nor my family have any reason to trust the SE Kent Hospitals,and we do not,with very good reason,so I have a vested interest in making sure Slims treatment plus carer is explored and done to the best of my ability.
During the 2 1/2 years I have found mistakes made nearly costing Slim his health.
So yes I do think it is important for a carer to be involved,as time progresses and you may need that support ,!!!!
Thanks again Helen it does help and open new avenues,my daughter said may be because Slim is the patient and he seems so unconcerned about his treatment,and I am asking important questions and feeling there not getting answered,???
He is the patient,! I am just the person who wants and cares that he has the best treatment. And no mistakes are made. eve
Hi Annette
I am sorry to hear about your dad,I think you know the answer yourself,no one can tell you how much time he has left,there are a few on here who have been in the same position and they could give advice on how to cope with your situation ,but your dad will choose his own time,no doctor or anyone can give you a time .
I would suggest,it might be practical to get in touch with Macmillan ,who can arrange for your dad to have some care in the hospic ,there not places just for people to die in,they do a lot of therapeutic work as well,plus respite,it is worth exploring ,as its helpful to the patient as well as family.
I hope you have lots of answers to your question ,from people who have trodden this path before you,but as there loved ones die they look at the forum less.
I wish your family well on the last stage of your journey.Eve
Hi Mari
Just unpacked the Motorhome,bulging with wine,but poor Slim has not enjoyed a drink for 21/2 years,tries mine every now and then,but does not enjoy the taste,have bought some beautiful wines back,filled the wine rack:-) ,but I do like company when enjoying my cheese and wine!!!
If Steve is enjoying his wine it must be getting better,I often think its harder on carers second time round,when they start the first journey,its a learning curve,and you go with the ups and downs,but facing it all over again with knowing all the pit falls is very hard,the only good hing about it is,because Slim went through the mill,I know all the pit falls,and on the plus side,I will make sure Slim spends as little time as possible in hospitals and with the new Motorhome which is smaller we can have lots of time away,with all the comforts of home.
I keep saying summer is round the corner,but France is flooded all river banks are breaking,watched French open could not believe sunshine in Paris,those poor French farmers will be asking for more money soon:-| love Eve
Hi David and all the rest.
Glad to hear you are doing well on Velcade Slim found it much better than Thalidomide ,but alas for him it is considered a not to have worked,you must be looking at least half the remission time again if not more,so well worth a passport,.8-)
Andy is a brave soul,but I can see why he lives for today,we have just got back from France,Slim was ill but had antibiotics,got off boat at 6pm in doctors at 7pm,doing my best to keep him out of hospital,doc gave him antibiotic started Dex plus Claxane ,bloods taken today,saying all that I think we are going to risk a few holidays,this Myeloma is not going away,so it will just have to come on holiday with us.
I think remission is a word that's now confined to the cupboard in Slims case,Revidimide then maintenance is the order of the day,so lets hope it enjoys going on holiday with us.. Love Eve
Hi Fi
I can understand you worrying,as it is obvious to you that your Dad is deteriorating ,and you are not in a position to know,what your dad wants to actually know!! I think this is very important as some people just go along with what is happening and do not want to know what the out come will be.
The one thing I do know your dad should have as much pain relieve as possible even if he is sleeping a lot,if you want to know the position,get your dad to sign a letter giving you permission to speak to consultant,then you can ask the consultant the position your Dad is in.
You must consider that your parents might prefer to not know?? Myeloma is a cancer that has no cure,and everyone comes to the end of treatment,when no more can be done.
You could always ring Ellen,she might be able to advice you better . eve
Hi Pauline
Welcome ,climb abroad the roller coaster,because being a carer or patient that is what this ride is about.
First Pauline we need more info before any one can help you,why is hubby going every week???
What chemo is he on????
Has he got full blown Myeloma or smouldering???
The best advice I can give is arm yourself with knowledge,read up on Myeloma look at back issues,a must is you get on the telephone and ring Maggi or Ellen and talk to them!!!!!!:-) They will send you booklets all about Myeloma,it might seem hard at first,but you will soon pick up on the medical terms.!!!!
Get on the phone!!!, Eve
Hi Mari
Slim only got 6 months remission after the 100 day BMB,because it no longer shows,he has to have BMB,they will be monitoring the Myeloma every 2 months with Slim having a BMB.
It does not take much working out,None of the treatments Slim had worked,trying to be positive about Revidimide ,but when Slim had Thalidomide ,in the 6 cycles it actually increased to 80 percent in bone marrow.Velcade worked until he stopped using it,but that was also considered a failed drug.
It's hard times at the moment!!?, Love Eve
Hi Mari
So good to hear from you although the news is not good,I have been wondering how things were going.Try not to kick yourself to much Mari,we all can only do are best,Steve is just like the rest of us trying to buy time,with hindsight is a wonderful thing,there is no magic Wand,it works for some and not others.
Steve,s body has taken a lot,I remember Slim when he came out of hospital,and they said they wanted treatment to start the following week,but he did pick up took a long time and lots of damage caused by Pnuemonia and blood clots,its left a weakness in his lungs,but he is still alive. Saying that I have just come home early ,thought a break before next round,and had to take him to doctors,doing my best to keep him out of hospital,chest infection,so started Claxane injections early with new antibiotics ,plus starts Dex tomorrow ready for starting Revidimide next week.
How are you keeping Mari still working hard and juggling your life????
Keep in touch Mari,it will take time to build Steve up,small amounts of food little and often,some people on here have been on Revidimide for a long time,Slim will have the course and if it works will stay on it as maintenance until it stops working,I am trying to be as positive as I can,so now exactly how you feel,but you can only do your best it is hard when you see such a drastic change,you may never get back the man Steve was,but you can enjoy the time you have. Love Eve
