Hi Jo
I have only just read you post and realised you have started treatment again,So sorry Jo,lets hope by starting early it gets you into remmision early.
Velcade worked for Slim the worse part was going and waiting so long for an injection that lasted seconds.
Good Luck with the treatment Jo,Love Eve
Hi Mavis
I am so pleased for you,lets hope you mobility gets better as you get stronger.Love Eve
Hi Debbie
No one says you cannot drive,to me it just seems reasonably not to drive whilst taking heavy drugs,your mums treatment might only go 4 to 6 cycles,so no reason why she cannot drive the rest of the time.
As for insurance you are supposed to inform them of any changers:-/ but if you cancel your insurance and after a year take it up again you will find that because of no insurance for a year,it will be very expensive.
My advice is keep insurance,just do not drive when under the drugs.Eve
Hi Sue
As with Myeloma every person is different when in your situation,and also react differently,You have to do what is best for you.
I have a friend who use to be in the same position,she used to be worried how she would cope with the practical side of nursing,her husband chose to stay at home,he did go to respite,to give her a break,but when the end came,he was at home.By accepting and planning it was an easier process,it was over a very long period for my friend,and both of them amazed me.It gave them both a long time to accept talk and plan.
I honestly believe because of this,6 months after his death,she is able to function far better.
We have been friends for over thirty years and because I was coping with Slim at the same time,we spent time walking the dogs,I still feel guilty that at the end because of Slim going through SCT plus loosing my grandson,I could not be there to help her.So make use of the people who love and care for you.Love Eve
Hi Vicky
It will soon be over and Colin will start to recover so fast,it is heavy going,for both of you,I went in to the hospital every day except once when I went to a funeral,the funeral seemed light relieve compared to going in every day,
When Colin comes out the hard work begins,so you must try and rest now.
You soon forget,they do realise it is a heavy toll on patient and carer.
It is worth while,although going through the process it does make you doubt it.6 months down the line and planning are future.Love Eve
Hi Trish
That is lovely news,worry always there in the back ground,but say to mm and worry(s-d It),this is your time so enjoy.None of us know what the future brings8-)
We are off to NZ on the 25th of Nov.return New Years Eve,it is exactly 34 months since we have seen one of our grandchildren,the other one flew home with are daughter last year.So it,s NZ here we come.
We did spend 3 month in NZ so this time we will just be staying at my daughters,may be a few weekends away,depends how Slim is.
You have to make the most of the time you have,I know what you mean when you say,you could not have imagined doing this,I hope all the people who are going through the mm journey take some positive thoughts from this.Eve
Hi
I have come on to comment because I so admire you fight against Myeloma,here you are three people who have gone through all this treatment and are still in there battling.
I know you all have no choice if you want to live,but its the stamina I suppose I admire,any body reading your posting,and not know much about your treatments,must be thinking WOW,plus how can they be so off the cuff.
So Keith Dai and Scott,If I wore a hat I would take it off to you all,keep on with your holidays,special days,and all the things you enjoy,may be that is the best drugs of all.Eve
Hi Gill
No it is not suppose to be ok,far from it,its learning to cope with the fact that people,do not know what to say to you,and by saying nothing,in vase they upset you,they do not realise this hurts more.
As you know my daughter lost her child Matty,and she has got to the stage she puts people in colours RED AMBER and GREEN
Green are people who are normal with her
Amber are people who she is angry with,because there is no acknowledgement at all that he died or lived
Red is the people she would gladly slap across the face,for the stupid remarks and hurt they cause.
My take on it all,is walk a mile in her shoes no fun.
She did post this on her facebook to try to make people understand.
If you know someone who has lost a son,and you are afraid to mention them because you think you might make them sad,by reminding them that they have died.
They did not forget they died,you,re not reminding them.What you,re reminding them of is that you remember that they lived,and that,s a great, great gift.
I offer no advice,except what Min said once you have to make your world bigger.Love Eve
Hi Tina
I know I felt the same way about Slim,it seemed like you have had it get on with it,but who is in charge.
It hits you after a length of time in hospital,they do realise this,but I think everyone would agree you will make better progress at home.
I would say follow procedure extra cleaning,fresh towels plus being careful about food.Do not expect to bounce back it is not going to happen.Eat and drink what you can,always have a drink in front of you,Slim lived on milk,lots of small thing in fridge small portions to eat ,although me and the dog ate most of them.they were there if he wanted them Slim did not start gaining weight until last month,drinking is more important.
It is a good idea to keep checking temp when not feeling well,first sign of anything ring up,and go to A&E,best be safe than sorry,they can check your bloods,Slim was admitted twice,so it is worth going early if symptoms raise there ugly head.
In a few months time you will be looking back and thinking,I am through it now. Love Eve
Hi Everyone
Well I feel less stressed out just reading these posting,so may be that is the answer come on here and talk about it,because the people who reply are all in the same boat,and if they are not,some time in the future they will be.So we help each other.
David I loved the bit about your grandson,same as one of are grandsons,he wants the 5 plagues of the Royal Marine Commando,s Slim is just one of a few that has served in every unit.We have four grandsons left now Matty has died,so it has been decided to give them one plague each now,and Slim will keep the fifth,rather than wait until the end.Better to get the elephant out of the room,so the children can accept it is a normal process.
That is my stress buster for the day,I only hope Mary is coping as she has not been on lately .Eve
Hi Marlene
This is just to say hello and welcome.
I cannot help with your questions,but I am sure someone will come on and give you some answers,may I ask how long was your husbands remission and what arm of the trials he was on.?????est of Luck Eve
Hi Sue
You are right it could have been approached in a different way,people say when you have news that shocks you,you only hear what your mind will accept.So may be no matter which way it was put,it would have had the same effect,
I do not think any one can give a person a time limit,yes they can say,the treatment is no longer working,and no further treatment is possible.what this gives you is very valuable time to adjust,and say to each other all the things that have been left unsaid,
I would recommend you see your own doctor as now the district nurses have a lot of involvement.
Time is only how you see it,a number is just that,make the most of your lives,let people help you both.My best wishers to your family.Eve
Hi Sarah
I think Dai is right concerning the chest infections,when henry had the SCT he was given lots of tablets to stop different infections,I am not talking about normal antibiotics,in theory if Henry has been treated with antibiotics plus steroids,his chest should clear up,unless he has damage to his lungs.
You must trust your own feelings,:-S do not forget large doses of steroids mask infections,check his blood pressure .All the best Eve
Hi Dai
Do not worry I do not take everything to heart,lol!!:-P
You have managed without knowing it explained a few of the things that have been bothering me for some time.If I may explain.
1 Slim was a commando marine for 24 years.
2 Slim also been a diver for for well over thirty years,professionally for
about 6 years when he came out of marines.
3 Never been in the mines.!!!!
His attitude all the way through this Myeloma has been
1 Why worry about something you cannot change
2 Never expected to live this long anyway
3 Lets just get on with it,I can hack it attitude
So for me your explanation explains a lot.
As a carer,and a person who likes to be in control,I am the worrier in this partnership,Slim just gets on with it and relies on me,to keep him save.
I take the attitude,if I can keep one step ahead,I can help him.hence the worry,and the knowledge that one day,I will fail
I suppose we all deal with stress in different ways,and we all know stress kills people,I have dealt with stress in work situations and must say I enjoyed the adrenalin rush,but when it comes to my family illness,it is a very different ball game,one that leaves me struggling to cope, if It had been me with Myeloma,I do not think I would have coped as well as Slim.
So how does the person cope with stress,that,s Mary,s question,????????
Do you pop a pill,which does work
Do you do alternative treatment
Do you do counselling
Do you adjust your way of thinking (need lesson in this )
All food for thought.Thank you Dai. Love Eve
Hence the 4am job.
Hi Winston
No not much help,I am more interested about the run up,because I am assured,the bloods,will be the first marker,so how did you get in the position of compression on the spine???,as I said they should have discovered you going out of remission,I have my own reasons for asking,can you help.
