Hi Jan
I wonder how many would take it up!!!
Everyone can do fact but it,s just paper work or if you like a survey .
The Myeloma world is hear on this forum,because it tells you about how people are living with it now,how family react. My daughters do not get involved with the medical side,if I asked for help I would get it from them, I suppose there attitude is mum can cope,they pick up on sadness in my voice,so practice of happy mum comes into play on phone calls.
I think to put a burden on to family is wrong,the tendency is they try to help by giving reassurance that things will get better, and it is not,it does not mean you give up,you remain as positive and hope new chemo,s or treatments are in the pipe line,but specially grandchildren have to be prepared and accept that death is going to happen in the future,it should be spoken about not just about arrangements,but everyday things,if we have to have a big fat elephant in the room,it has to be talked about.
Love Eve
Hi Helen
Slims ok about BMB he has had at least 6 says its not pleasant ,but would rather know the situation with Myeloma.
Only because we have been hear before the symptoms are all there,fatigue big time,body aching all over,colouring not good,appetite small,going backward with health,Slims a stubborn man takes a lot to admit to pain,but consultant words were,you should not think every pain is Myeloma !!!! Helen giving Slim any form of a hug is painful. Love Eve
Hi Everyone
By the time Pat reads these post,cleaner hired plus making lots of arrangements,away from work!!!
We were lucky we had a good head start on all of you,over a short period a long time ago,we made big decisions completely changing are life's ,sold business kept a small flat to let,and off we went,dog as well,travelling everywhere in a Motorhome,had a wonderful 10 years,so we do not have any regrets,the only thing is we would have liked more travelling ,but can only do it for short periods now.
Seriously I think anybody who does have a wish list and does not start doing it now!!! Will have regrets.
So Pat take a deep breath,there is so much to do and enjoy ,you just have to have the health to enjoy it,give hubby a break get a cleaner,spend money and help the economy. Love Eve
Hi Dai
Well I must have read it wrong as well,Revidimide and Velcade had to be used before eligibility for Muks 5 .Which if only patients who were on CDR then Velcade then relapsing would be eligible,I would think they will be hard pushed to find patients!!!!
I would seriously question eligibility !!! Good luck Dai. Love Eve
Hi Everyone
Getting a cleaner is the best thing I did,only 2hrs but makes a difference,mind you she sought of hinted about my 20 year old dyson,and she did bring her own steamer,I went out and bought one the next week,no doggy smells to be found,when Slim has a moan about her moving things,I have to have words with him,he has old man syndrome ,everything at arms length.
Jo I am waiting for next BMB on the 7 th,Slim is now using sticks,he has body pain all over,if it was localised would have a better idea,he has defiantly deterioted over a short space of time,found out from Ellen how much it would cost for a PET scan,so have it ready in the pipe line.
Tom men do not notice dust in fact rooms are round when it comes to hoovering lol.Love Eve
Hi Pat
Yes there is,I stand in amazement at people who do not get help in the house ,but if cleaning floats your husbands boat????,it's ok. I intend to spend as much time with Slim,not cleaning,less cooking and more going out.
As for depression it must come with the territory ,its the ability to recognise it,do something about it,and not worry about popping a pill,the big thing is to have no regrets. eve
Hi Sandiex
Your mum should only get zometa side effects for a short while and it does work wonders with bones for a short period. Why Warfarin and not Claxane you could do them for mum they will do the same job but cost more, I would consider Claxane to be very important as chemo side effects are blood clots!!!,
Sandiex Osteo Cronosis of the jaw is rare ,only effects 1 percent and is connected with teeth removed .if my doctor adviced me to take Bisphosponates ,I would as it helps prevent osteoporosis.
I think you mum is a star living on her own and managing Myeloma plus breast cancer,it must be a bit scare of a night for her,as the medication tends to keep people awake,we use to often be up,making tea.so to manage by herself she's a star in my book.Eve
Hi David
Have been told war horse is a wonderful stage production,my granddaughters loved it,might get to see it myself one day.
The new combo of drugs should see you through the paracetamol gives an extra dimention to any morphine drug,plus if you have liquid back up as well.Slims on combination ,just about keeps pain under control,he is so concerned about increasing it.
I think if it gives you a quality of life,that does not cause pain which causes sleepless. Nights and fatigue ,it must be good.
Love Eve
Hi Clare
Welcome to the Myeloma club!!,patient,carer or family,I hope you get a good response to all questions.
My husband is 69 this year he had SCT after two courses of chemo,CDT plus Velcade., He only got 6 months remission. After the 100 days,he went to Kings I can assure you these top notch London hospitals,know there job,they do it all the time.
It must be your mums choice ,if things did go wrong and you pushed,you would never forgive yourself .!!!!
I believe it gives people a chance of having a better remission although it did not work for my husband,would he do it again???,at the moment no,but when the prospect of death looms who knows,but I do not believe they would not offer SCT again as age and 6 months remission first time is against it,as next time round it is likely to half.
I hope this informs you but does not upset you.
Let your mum decide herself. Eve.
Hi David
It's beautiful at the moment sunny without wind.Eve
I am pleased this little thread has opened to a large one . Thanks to you Dai were would we be without you,
When Slim came out of remission, it just seemed if I could not be open about it and slipped it into some ones post.as Andy says you start not posting,it seems all doom and gloom,but this is the time you need opinions around you ,this Elephant in the room,has become not so much about death, but for me living with the knowledge of it,if we on here fail to talk about it,how can we talk to family about it.????
I do not know the answer,s I am not talking about arrangements,I am talking about a new journey,as I do believe the best shot at Myeloma is SCT.,once it fails as in Slims case,practically over a year of CDT then Velcade to get to SCT then get 6 months,you have to be realistic , and I hope by admitting it on here I do not upset anyone!! We are not giving up, just accepting things are different . Love Eve
Helen
Given Elizabeth a buzz on Facebook. eve
Hi Dai
It's not that long ago I was saying to you,that you were going along one branch of the tree and Slim along another, how wrong could I be, trying t be positive,I could have lost him that first year and here we are 2 1/2 years later ,we did a lot of reminiscing last night,things we use to do !!!! Only out for 1 1/2 hours,he could only manage a few mouthful s kept apologising ,to me and the waitress ,so as you can guess Slim went to bed and I had a bottle of wine for company,it was a good bottle wasted on me.(time to pay the price ) got a whopper of a head ache should no better!!!!
We're Janet is concerned,if you can manage it get down on your knees and grovel,what keeps Janet going is you,if you are ok she,s ok,the sad fact is carers worry so much about the people we love.Stay positive and she will be right beside you.
Keith as you say has always been not far away from you,so it does hit home,Slims been taking over people in front in terms of options,an some like Andy,just want the chance of SCT.we do not know why it effects people differently ,but one thing we do know,is if you remain positive it does help to keep you going.
When the news of Keith came,I wondered how hard it would hit you,I think we just have to enjoy what we have now,and be as positive as we can,my job is to make sure Slim gets the best treatment available to him,and enjoy what ever time there is.
I am dreading all the time we will have to spend at hospitals,they rang up with an appointment for the 4th we have one on the 7th,makes sense to combine appointments same department.but I think e have just become numbers to be slotted in.!,,!!!
There's a good early morning ramble,helps sometimes,when positive is no longer in your dictionary . Love Eve
Hi Everyone
Tonight Slim and myself went out for a meal, to celebrate our 2nd wedding anniversary ,this one occasion when the elephant should be locked away in the cupboard , 2 years ago getting married in ITU, no honey moon,the first anniversary Matty my grandson died two days before,plus Slim was in hospital waiting SCT. So everything low key for second anniversary .!!!
That elephant has a lot to answer!!!! He interferes in ordinary things, like a simple meal out ,I think I am going to have to shoot it!! It is getting in the way,of being able to pretend that this is not happening .Eve
Hi Helen
My feelings is hit it hard,Velcade worked for Slim,I would like to see maintenance with Velcade,they know for some it stops working!!!!,Slims on your tail,another BMB on 7 then wait for consultant on 24 for decision !!!
Good luck Helen get the Palmers cocoa butter formula and tell hubby massage every night,just do not tell him it's on your feet,helps with PN. Love Eve
