Hi Jacquie
Congratulations ,just go with the flow,as every one says it is doable,harvesting stem cells is a bit of a haul,let's hopeitjust takes a day,things just fall into place from then on,all hospitals are different how they deal with SCT.
The only advice I can give you is,do not go out and buy new night clothes,plus take in you own cup as hospital cups are small if you cannot eat ,just make sure you keep your fluid up,and make sure you take sickness tablets at least 15 min before meals eat what you fancy,the same with drink..
Good Luck with the SCT .Eve
Hi Everyone and Dai
My name is Eve I use to be Slims partner for 31years,no intention of marrying felt we did not need it,how wrong could we be.
We married in ITU on the 26 of April 2011.
In Febuary 2011 my husband was diagnosed with Myeloma.
Slim and I are both retired,and have had a wonderful life are last 15 years have been spent traveling in our moter home,we decided to sell our business and have some life why we were young enough to enjoy trips to many places and I am so glad we did,because if we had left it until Slim was 65 we would not have been able to do it,Slim is 68 and I am not telling you how old I am,since Slims SCT he now weighs 70k and hair has grown back dark and curly,so he does look younger than me8-)
He had 10 months free of Myeloma,and after a BMB we have been told he is out of remission,so we wait for test results,full body ex rays and MRI scan.
At times life seems so unfair,but I do realise how lucky we have been,we managed to get to France,go on a cruise plus spent 5 weeks in New Zealand since Slim had his SCT.
My motto must be never put off things for another day,time is something so valuable now.Eve and Slim.
Hi Ali
You would be better you rang the myeloma help line t speak to Ellen or another nurse.!!!,
Every one on here can tell you there story but it will not help you .Go back to y our GP and keep pushing until you find out why your white cells are low,the problem with Myeloma is a GP. Might only come across 1 case in a life time and people have different symptoms.Eve
Hi Maureen
Well what can one say,it's one thing after another ,this is we're the family have to help out,even if it is just for an hour to give you a break.
In Ian,s defence he most properly does not realise how everything. Is taking its toll on you,but it does not mean you have to sit back and take it. You do have to find you own way of dealing with this,because you go through all the symptoms from guilt and feeling you just are not doing enough,you have to toughen up and say to you self I am doing my best.if you carry on you will not have enough energy for when he comes home.
Start learning to take short cuts instead of baking a cake buy one,get help at home if you can get a cleaner in ,less time keeping house straight,anything that gives you time to relax away from work,hospital,if you have a good friend who you can turn to,not to talk about your problems not all the time,but someone who understands the problem it helps.
Hand on my heart I can honestly say,I the end you just want to step out of this Myeloma. Bubble it is such a cruel and gruelling illness,so you have to learn to step back,accept you can only do your best. Eve
Hi
Just something might be of interest to DAi and Jean,if I am correct you both have children on the isle of shep who both wrk in the prison service,Am I correct?????
Small world.Eve
Hi Jean
I did not need to shaves Slims head,but he did look funny with tiffs string out,in the end just cut them down to nothing,then it just went by itself down the plug hole.if you have the nerve you could do it yourself .Slim would not let me near him with a razor for his head or face.
Even in ITU a nurse offered to shave him,but would not let her,that's one thing you do not have to worry about the first month there. Is no sign of stubble
The nurses did nt do it on Slims ward,it would have been better to go to the barbers before he went in,it is hard to watch it on the pillow.or blocking up the plug whole. Love Eve
They should let me in the under fifties,then I could really let rip,and I feel like it after the day we have had,people seem to think because you have grey hair,you should not have an opinion ,and being 5 foot nothing does not help.
Just so angry,have had a few beer,s to relax me,but its not working.will have to try vodka,works for you Tom.
Babs,I know how you feel,I just could not phone my kids with the bad news,so I face booked a private message in our family group,but I sat here later on with tears streaming down my face with anger,how a consultant can say the treatments are not gruelling is beyond me,I felt like telling him to try it.Slim asked why I was crying,he said I am not dead yet.Eve
Hi Tom
His pubic hair never came back. Lol.Eve
Hi Peter
Since 2003 you have done very well pity about RT but if it solves the immediate problem,then it must be worth it.
10 years to anyone on here is all good news,the fact that you now need more treatment is a bit of a bummer,but that's what we are here for to support each other when times are hard,age does not come in to it.
Slims come out of remission,we saw the consultant first time in February 2011 he's had CDT then Velcade then SCT,but the consultant does not think the treatments are gruelling ,his words.
Slims attertude is being positive,I am just angry,I suppose I will calm down,and just get on with what needs to be done,but you still give me hope .Eve
Hi Sue
Well Sue the reason they say oh,and walk away,or go in as you come out,is they cannot face it and by looking away they think it will not happen to them,but when something like this happens to them,who do you think they will go to for support and advice,I am sure I do not have to tell you the answer.
I had a conversation with a consultant today it went something like this.
I asked about maintenance with Velcade as Slim has had 2 years of gruelling treatment,and do not want him to go through another treatment if there was a chance of Velcade maintenance which we were prepared to pay.
Answer was the treatment for Myeloma was not gruelling!!!!!!
He asked if we had private insurance,the answer was no, he dismissed it without giving us any figures for treatment,do you think it's my white hair,that we did not deserve an answer!!!!!!
A couple of weeks ago,I asked for Slim to have a BMB as it is the only way,to tell if its,coming back,I phoned yesterday for results which has been filed and not looked at,I know how to ask direct question so it went what percentage of Myeloma cells were in the bone marrow
The answer was 10 percent.
An appointment was made for today,the general treatment is you have to sit back and wait.we did manage to get a MRI scan plus full Skelton ex rays,and BMB in May.
So the conclusion is we were prepared to pay for Velcade dismissed
All you people who are going through Myeloma Treatment,the expert says its not gruelling(makes you laugh)
If you did not laugh you would cry,I think that elephant has escaped from the cupboard .I think I will have to find a white haired mouse to frighten it away.
By the way Slim look good,he even had women playing with his curly hair on Mother's Day .Love Eve
Hi Tom
We only live 20 miles from France,and they are so moterhome friendly,believe it or not its cheaper to spend a month in France,than a week in this in UK.So if we manage to go away it will be France.
Now Slim looks well,if anyone ask how he is I say fine,because if truth be known they do not want to know!!! And they don't want to know the in,s and outs of it.at least you can come on here and say how you feel and people do understand, but I have noticed people are reluctant to give bad news,I understand why,we have to have hope,because it is a strength,that keeps people going and no one wants to upset anyone.
So may be we should be more honest with are selfs on here???Eve
Hi Min
I suppose the difference is you have been there I have not,I do not know how I will feel,that is yet to come,mt daughters think I will go off in the motor home,but you cannot say until it happens,at times I do wish I had my life back instead of being in this bubble,but I do know people who are no longer in the bubble but life has not changed for them.
At home life goes on as usual,but we do not travel any more,it is hard work!!,we plan for the future although we do not know how long the future is,when. Slim was very ill ,my mind prepared it,s self for the worst,when he was over that,I just thought I cannot go through all that again,he remembers nothing which is good,it's like most things when you are scared,you make a joke of it,because if you worry about it,it will claim you health as well.
Also
Min people like you who have picked up the pieces ,help people like me,who have to go through this.Eve
Well I can only speak as as Slims Wife,I dread it all coming back,and I do have my blue moments.
Slim is just the opposite he does not worry at all,but he does not sleep a lot ,when I ask him is he is worried it will come back the answer is no.
His attertude is ( I never expected to live until I was 28 so everything. Else is a bonus)
There is no elephant in the room,it,s just a joke. I tell him I wil prop him up in a chair, like the mother in the bates hotel. Cannot afford to die,his pension dies with him.
He just says the has to be someone who is cured first,and it is going to be him..so the elephant des nt exsist in are house.
I do think people who have faith,and believe they go some were and meet the people who have gone before.are people with a great believe in god.I sometimes wish I had that faith.
The fact is people die,and when it is your turn you just hope you die without pain.how can you fear what you do not know .Eve
Hi Paul
Hang in there it is going to be worth it,the fact your still working is a lot,tiredness is one of the symptoms my husband had,but not the moon face he did have a rare side effect painful scrotum .very rare!!!
At least having your treatment subcutaneous saves time.
Jo nice to hear from you take it you are ding fine.??? Love Eve
Hi. Bev
How are things going .i am just boosting this up,as people might have missed ir.Eve
