Hi Sue
Well I think this is worst it can get the only way is up now,surgery done,see how his mobility goes,do not be afraid to use a wheel chair until he feels a lot better, then start on the chemo again,he is not the first and will not be the last.
As for him feeling low,it is understandable,try to do something every day,even if its just a drive in the car,plus make time for yourself,claim anything you are entitled too.,get help in to keep the house clean with allowances and make a little time for yourself , Eve
You will get there,by the way,we are in New Zealand after two years ,plasma toms and lesions on shoulders and skull,plus two lots of chemo,so there is hope for you yet.!!!
Hi Sue
It must be very hard for you at the moment ,people do not know what to say,must find it very hard to send a card,wishing you a happy Christmas,but as Gill said we do understand what you are going through. At least you have your daughters around,I would suggest if you have a good friend reach out to her,no one wants to upset you,but if you make the first move you will be surprised how good people will be,
As you know I am in New Zealand at the moment,the time difference is 11 hours so if you want you can contact me through face book private chat or send e mail,it might help to just talk as I know about those 4am moments,your mind goes on a trip all by it,s self.
Michael should not be in pain,has he a driver fitted,I would speak to your district nurse as they now take over the care and are on call 24hrs. It is time to get the experts on board,a friend ,s husband said to me,the time will come when you have no control of the situation ,so my advice if you wish Michael to remain at home,you will need help.
I wish you the best possible Christmas that you can have,as it is important ,love to you and your family.Eve
Hi Andy
Just a quick one,potassium,if you eat at least 2 banana,s a day or anything that has lots of potassium in,it will save you taking those horrible tablets,Slim said they played havoc with his stomach,when in ITU he had in through line,hope this helps.
Good luck with everything.Love Eve
Hi Everybody
Yes still here,have been busy packing and going out to lunch ,will be leaving 2 friends behind who lost there husbands to cancer this year.:-(
Nearly finished now,staying at daughter,s in Sevenoaks,and getting a taxi to Heathrow,£70:-0 ,that,s mates rates feel it,s better for Slim.wheelchair assistance on stand by.
Taking the attitude it,s doable,son in law meeting us at Auckland,then flying to South Island again easy option.I am told its 5 star accomodation in a shed:-/ .a sleep out as they call it.Have to see what trips we can do,when we get there.8-)
It is to see the family,
So glad I plucked up the courage to book it,as for affording it David,with Slim not drinking at all I saved a bomb:-D ,and it will not cost me any extra money,with staying with daughter.
I hope you all have a wonderful Christmas,and for those that,it,s not so good,it will get better:-)Love Eve and Slim
Hi Tina
Yes it does get you down,I felt things would never improve always worrying about Slim,and I am just the carer,you have been through so much,it is expected,but there is only one way to go,and thats Tom,s way.
The expectation that things will improve on a day to day bases does not happen,often felt Slim was taking one step forward and two steps back.
Sorry to tell you this,but Slim took a good six months,and still eats small meals,if he finds something new he likes,he will eat it every day,pies are the latest,gone off so much food,fruit vedge,meat,and fish.but other people just seem get better quicker.
Plan something every week,so you have something to look forward to,even if its just going out to lunch.Love Eve
Hi Tom,
Well Tom,you should ask yourself how does it compare with child birth,you do forget about the bad things and look at all the good things that come out of it .LOL Love Eve
Hi Sarah
I can only give you the view of the carer ,I am 63 and Slim my husband is in remission after 2 years and a SCT.
From they start of having to make a decision to have a SCT,I looked at everything,then told my husband the facts,and told him he must decide for himself,if any thing had gone wrong,I would never forgive myself for pushing for it.:-S His life his decision !!!!!
Your mum does not need people in her life,who cannot be bothered to pick up the phone,we all have,someone in the family like that.We are a small compact unit,and this is all we need,i am lucky I have 1 or 2 good friends,both have lost the husbands to Cancer,so that speaks for it,s self.
Either way you mum goes,it,s all about buying time,and it is always there,when is it going to come back!!!!,at the moment,I have locked it in a box and thrown away the key,we are off to NZ on Sunday,and we intend to live life to the full.When we come back it will be bloods trials and consultants.Then planning what to do for another 2 months.
SCT in my mind is a wonderful thing,at the time Slim said never again,now he says I do not know if they would offer it to me again,!!!!if it came back,people are having more than one,and the younger one,s are having back to back SCT.
I do not know if this helps,but it is the view of a carer.Eve
Hi Dai
Awake like you,had my tea and toast,Good night .Eve
Hi Mari
I thought I had problems,by gum,you beat mine,one of my mantra,s is there is always some one worst off than you, I am feel better already(joke);-)
We know the body copes with what ever it has too,it,s when every thing has passed,Myeloma has been put in its box,I have put a padlock on the box and thrown away the key.another learning curve.getting morbid myself now,should be cheering you up.
I am sorry about you Dad,but do not go battering yourself up,I have my guilt over Matty,you just cannot split yourself up,you do the best you can.
I could tell you the same you have to look after yourself,but it is easier said than done. I am at the stage,were going out to lunch,is not curing it.
I do not know if you drink Marie,but I would stop,many years ago,I ended up with gall Bladder problems,even though I had an operation,did not take away the pain in my right side,to this day still think it was a combination of stress,plus trying to relax having a drink.Even if they have found a stone does not mean that is causing the pain.
As you are a teacher,half term coming up??Mad rush at christmas then a break!!!if you stay at home you will find things to do,so not a break.!!!
Love Eve
Hi Helen
I have seen this coming and should know better,the only way I can explain it,is every part of my body has for gotten how to relax.Any way a few more days tying loose ends up.We fly next Sunday evening,Slim as usual is taking it in his stride,
In past years when travelling in the Motor Home,all christmas shopping was done in the summer months when we came home,sound daft but took the pressure off,have always been away,so a christmas gift has been a must,although by the time we got back,there was no signs of the gift,lol specially when I bought the toy dogs that demand attention,one of my daughters,has never quiet forgiven me,even Nana,s have there pay back time lol.
Mint chop the Lamb has been slaughted,ready for the Barbie,the kiwi kids have been getting lessons from there dad about the dreaded mother in law,who is a witch and is flying in on her broomstick,the kids keep telling him kiss kiss nana is going to sought him out,and grand dad has to bring them some treasure.
I will send a post card from the land of the long white cloud.Love Eve
Hi Chris
Sounds if you are doing wonderful,a glass of beer!!!!!!!!!!:-P Slim cannot even look at beer,every now and then he has a sip of my wine,and pulls a face.I am saving thousands of pounds;-)
Please look after yourself this period is so easy to mess up,Love Eve
Hi Deirdre
I will not say I know why you are so confused,its either something that has gone drastically wrong or lack of knowledge about mm,and some were along the line you have extra complications.
Even if your husband had smouldering Myeloma,some one should have been keeping watch on his bloods,from your answer" only having Zometa"Well it strengthens the bones and is known to help with chemo drugs,but it is not a chemo.
Haemoglobin count is an important marker
Kappa Light chains are high when Myeloma is present
white blood cells
Platelets
Neutrophils
To me it sounds if he has been admitted with AKF,and has not started on Chemo as you would know more about it,that is were it gets confusing.
They will not look at the Myeloma until they get him stable,usually Dex which is a steroid is the build up to chemo,
If he does not go on a trial,first line chemo is CDT.you will know if he is on this because he has to sign a lot of paper work.
So try not to worry about what has not started yet.
His kidneys are important at this moment.
There are a number of people on here who go into hospital in A&E with AKF or Hyper calcemia,very ill at the time,but respond well to treatment.Kidneys can regenerate time will tell.
It does sound if something has gone wrong from 2009.
The concern now is to get him better,lots of people on here,have had problems with being diagnosed as only 3000 a year in uk,doctor,s might be lucky and see one patient in his life time,and younger patients do not fit the norm,plus kappa lightchains,show in the urine.
Stick to Myeloma Uk site for now,otherwise you will scare yourself to death,forget about how long he will live,I know it is hard,just take it day by day.you are on a big learning curve,it is do able.
Look at old postings on here,you will learn a lot and see there is light at the end of this tunnel,get your husband on here,it will help,good bunch of people,who have lots of highs and lows,plus a great depth of knowledge,they will help you.and you will make friends,if you can get to an info day it will help,or talk to the nurses on here.Eve
Hi Dai and David
I think I upped the stress limit with this trip to NZ,getting everything ready doing all the organisation,plus producing Christmas presents for the people we leave behind,specially the grand children.Have not seen one of my Kiwi grand children for 3 years,so this trip is a must.I also feel it has to be now rather than later,I do not want Slim to have regrets,There is a big health spar in NZ,so if I can get Slim to bare his skin and bones,we could book a weekend away there.
Before MM I found it difficult to jump off the roundabout until we gave up our business and lived in a motor home for 9 years and just travelled,it was a most relaxing life,recommend it to any one.need to get this life back on track.8-)working on 2 months cycles,6 weeks away,home blood test zometa and trials stuff see consultant then off again.If it works it will be great,we only live 20 miles from France.
Just need a quick cure to keep me going through this week.Love Eve
ps, one time I would have gone down to the pub but cannot hack it these days,may be I, should change my drink to vodka like Tom
Hi Jet
Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems injection only last 7 years and she only had an auto.
So important to keep your immune system healthy,good luck for the future just in case you go off the radar again.Eve
Hi Deirdre
Welcome to the site,yes the whole thing does seem so unreal,it is all a bit mind blowing,how are you managing in yourself are you getting enough rest??
It must be hard work,going to the hospital 3 times a week,why are they talking of ( crancking up the chemo??? )
How long has he been on treatment and what chemo treatment is he on.??Eve
