Hi Scott
Just a small welcome,:-P :-0 😐 🙂 🙂
Some people do not look in on the under 50 site so 2 things.
Apply to join the under 50 scroll down,and you will see who to apply too,then on bad days you can,really let rip,it's a private site not open to general public ,saying that,we want to hear how you get on as well!!!:-S .So if you go to Newcomers,more people will see it.
My husband is older but was very fit RM for 22 years, he is 2 1/2 years on this roller coaster ,it does not matter what age you are,it's an awful disease .
Will leave space,so people can welcome you,!!! Eve
Hi Vaneesa and Stuart
When these thing happen it seems awful,but it might be a blessing ,is Stuart of sick at the moment!!!,if he is they cannot get rid of him!! If he isn't,get him to approach the company,and ask for redundence through ill health,he could then try for a claim ,on his health grounds. This might take some of the pressure off money wise,talk to CAB,also Mac Millan,have specially trained advisers this can be done by phone.
If you are going to be in negative equity,stay put,just arrange to pay interest only,it can be done. cAB will help you there!! Stuart might qualify for DLA,depends on your circumstances
As for private health care,the only thing that I can see different is some of the newer drugs might be available to you privately ,for example when Velcade came up,it was only allowed by trials or private,but within no time it had been approved by NICE,even bupa you have to go through selection first.
Some times Vanessa,you have to be the strong one,you will learn,that money is secondary to health,give yourself a talking to,and start finding out what you are entitled to!!!. Stuart's health and peace of mind is more important,than any Job.Eve
Hi Jacqui
Should we be calling you Jacqui Tom,as it looks good all the way,good to have some very good news and as the blood count is 140 if you want to share it,you can give some to Slim. Lol
Good luck,Love Eve
Hi Helen
Well said,you knowledge and wisdom is missed on here!! Love Eve
Hi Jean
Just read your other post !!
Jean have you asked why he cannot have Clexane Injections,and take his chance with the other Chemo,s???
Slim has had mass blood clots on lungs with pneumonia ,plus a blockage in his artery from hip to knee,he has had Clexane injections most of the time,but now on a tablet RIVAROXABAN suppose to do the same job,but I know people who have strokes have to be careful,but if he decides to stop treatment he has nothing to loose.
As for your job Jean,if you can afford to give up work,it might be a blessing in disguise . I am a great believer in you work to live,not live to work.but what ever floats your boat.
I ran a B&B for 19 years,I sold up and never looked back,I am a great believer in as one door closes another one opens,must admit missed the money,but you change your priorities . Love Eve
Hi Jean
I can only tell you what I do with Slim,his as far as I know has not been that bad,we have had the odd night when he has to get out of bed and keep moving usually I am up there with him,it's a bit of a dance around the room,because he has to hold on to my shoulders,I massage his feet and legs a couple of times a week ,I use Palmers cocoa Butter formula,from boots,someone recommended it,at first Slim cannot bear for me to touch him,but his legs seem to relax and it's easier. I have kept this up for well over a year now.
One of the reasons I believe a massage is good,is all the Chemo goes through artery,s and veins,and it must effect there flexibility,trying to get Slim to do gentle stretching excises for his artery,s and Veins,plus ligaments must tighten through lack of real excises,so even if its not the cream,the massage must do some good.
This life lacks quality,I nag Slim to get dressed and take him out twice a day,walks 20-30 yards then push him,his general mental health has improved,I know he is very fatigued,plus lack of sleep,but he does seem to have improved a bit. Eve
Hi Tom
Private message on its way;-) 😐 🙂
Hi David
You put that so nicely ,and I do not think you are being pessimistic or not positive at all in fact I think you are being very realistic ,I posted not long ago in the carers section,as my head has lifted it's self we'll and truly out of the sand,,that elephant you talk about,made a run for the door squeezed out,and ran for the hills.
Slims only regret it not Diving the barrier reef in Australia,plus not getting to Galapagos ,he said he would put up with the cruise,as long as he saw the animals:-P
It's not to be,but he,s the same as you,he has had a wonderful life,just wanted more,I always thought he would live to his eighties as Grandfather and mother did,his mum only died 3 years ago this month,his DAd died 28 but that was a bullet,so cannot compare.
It's a different roller coaster this one just goes down hill lol,welcome Eve.
Hi Dave
Make sure you put a large lock on it and throw away the Key.Eve
Hi Dai
We have the trial at Canterbury,Pomalidomide with either high dose or low dose Dex and reading up on it there is no criteria;-) 😎 🙂
I think this will be the next one for Slim,as the BMB was a bit wishy washy,the sample showed clumps of cells,so they think overall it might have gone Down from 30 to 25 percent,consultant has kept him on CDR,bur cycle 3 took a battering of his bloods,picked up on rest week,starting cycle 4 with nuets 1.1 platelets 65 WBC 2.3 potassium 2.9.
So you never know we might be comparing notes!!:-P Eve
Hi Ner
Sorry Tom but I think Ner should really do her homework on this,if you go to off topic into Stans post on coming home ,there is a post from me there.!!!!,save me explaining again.
I can see we're you are coming from Tom,in terms of extra time,but you do have to think of the quality.plus on the down side if you look at Helen who was on maintenance and look at Slim who was not.Helen only got a few more months than Slim.
I know this does not apply to everyone,Helen and Slim were just unfortunate in there Myeloma is more complicated.
It has to be your mums decision ,but please go into Myeloma beacon forum, plus go back on old post with Revilimid ,and then you can make your own mind up. Eve
Hi Melvin
My husband was on the MX1 trials and had 6 cycles of CDT,after that they sent him for a BMB part of trials!! In the meantime Kappa light chains were going down all looked well for remission and SCT,but when the BMB came back it showed he was no were near remission,it had gone up to 80 percent in bone marrow,treatment was looking if it worked but it had not.
The kappa light chains and PP are no longer acceptable as markers for the Myeloma,he now has BMB every 2 months.,I am told my husband is unusual and his Myeloma complicated,but when I ask why,I do not get any real answers!!!!
Over a period of 2 1/2 years we have accepted,that the only way we can tell about his condition,is BMB and his general health,I have learnt to be pushy and ask for test,my answer to consultant is prove me wrong,the only thing I cannot get is a PET scan,and I have argued a good case for it,if I go private it will cost me up to £1000 ,still keeping it in mind.Eve
Hi Jean
I know you have not posted for awhile,and I could not send you a private email as its not on your profile:-(
How are things going with you is Mike out of hospital yet!!!
I hope your work is being understanding and more helpful to you,it's very hard to be in your position,it's no use me telling you not to worry and saying everything is going to be alright ,but I just want you to know,I do think about you,and I hope you both can get over this hurdle and have more time.You are in my thoughts.Love Eve
Hi David
So glad you went,the insurance people like to bleed you dry,I hope you do manage to go again,France is still very nice in October,specially the west coast,for us France is only 20 miles away,I walk the dog every day,and there's France beckoning me,I did not get the dogs booster rabies done,I forgot,so we will not be travelling .:-(
I cannot complain,we have spent the last 10 years before Slims illness travelling full time,and before that 8 years every winter,made up for all the holidays we did not have.
Have you done all your bucket list ????
It does become an acceptance,of the future,but at least you got that holiday in with the family.Love Eve
Hi Sallyann
I thought Slims consultant,lacked empathy to his situation,attitude you have myeloma,do not worry!!!,then you start looking on the net,and frighten your self silly,but what they do not seem to understand,if they give you the facts,with an explanation of them,even if its only in writing.Yes it's a shock ,but you get over shocks,but no explanation,you keep looking.!!:-P
I would ring Ellen or Maggie today,explain what you know,as you seem to have little information on here,they can help you,even if its just a list of questions to ask your consultant,you can always find his e mail address and e mail the questions ,so he has the answers when you go in.!!
Try to take it one day at a time,prepare yourself ,by writing questions down,ask for copy of any test done,like MRI scan bloods,you might not understand them now,but these days you can google any thing. Or better still ask Ellen free number at top of page,she is very nice,she is in a room by herself,so you can hear very clearly,plus she is use to people getting,upset or worried. And she will tell you the facts,she will even e mail you information.Love Eve
