Hi Sarah
Nice to know you look in and trying to get on with life,how many lambs this year,I bet you are glad to be in the south,those poor animals up north have taken a battering .
Grief does have to be done your own way, its a year on 24 for Matty,seems like yesterday,Slim came out of hospital,as it was all to much,next month it will be a year after SCT,which only lasted 6 months. I have stopped saying it must get better.
I would say remove any negative things from your life,mother in law and brother in law,they. Do not sound if they have your interest at heart.
I wish you well. Love Eve
Hi Mandy
Welcome,,everyone on here will tell yo the Myelma journey is like a rollecoaster ride,mentally and physically ,everyone is different,plus add the equation of carers ,you get a real mixed bag!!!!,so every thing yu are feeling is normal.
It sounds if you are doing well,had a few blips,but on track,to help your back!!! Plus SCT,it would be nice to sail through all this and lots of people do, you just have not had an easy trip,but give yourself some credit!!! You have got this far !!!
Any help to you,I moan and I am the carer,as for not being on trials,I would have to disagree,?? I take it you had either CDT or CRT.????. MX1. If you were not on trials first line treatment is CDT!!!
Good luck with you op,also SCT,let us know how you get on.Eve
Hi Helen
I just remember when you were diagnosed,with a simple blood test,as a nurse you never saw it coming,you questioned yourself ,no matter who you are aches and pains are a part of life,it is looking back and thinking as a nurse,I should have seen that coming,or as Sue says hindsight .
I do think sometimes the patient can be to close ,I have to rely on Slim to manage his own pain as only he can do it,it,s his pain,but I never stop watching.He also does not explain himself ,it amazes me a doctor always says how are you,what's the answer?????
May be if they asked were is your pain???
I know I am rambling but this is what I feel as a carer someone who has to watch. Love Eve no offence .
Hi Jean
Pleased you are feeling better,you got to see the x rays,that's more than I did,it pays to ask questions or in my case be a pain in the a——–s.keep asking as Bridget use to say,knowledge is power.
Is you husband on trials???
Take your boots off its spring,if you cannot cope emotionally ,go to see doctor ,nothing worse than blubbering to people who do not understand,saying that WE DO..it,s only at the start you need them,then you grow a thick skin. Love Eve
Hi Sue and Helen
Slim has been much better with sleeping since we saw are own doctor,and if Slim sleeps I sleep.
I spoke to her,she recommended paracetamol on top of Oxycodone ,which has helped,he is always reluctant to increase drugs,this is a man who never had a prescription until he was sixty and that was a drug being pushed through the surgery,s for people over 60 I do wonder about the super dooper surgery,s are they good for patient,or is money controlling them. Anyway our doctor has gone to an independent doctors surgery,another lady doctor who, know s about Myeloma.So that's all good!!!
I am amazed how different people are effected after SCT,as you know Helen,I watched you and Wendy,with cough,s and colds,Slim has had nothing like that,in fact I asked for BMB for peace of mind,as Slim although not ill,was very stiff,lots of general bone pain,plus little memory,you can put so much down to age,but I think a partner knows!!!
His consultant said you should not imagin every pain is to do with Myeloma!!!!
I read it as do not bother me again!!!!
I do think the whole set up for relapsed patients is wrong,you are left like a fish. Struggling out of water,when I think of the care when diagnosed,then SCT,it is lacking for relapsed patients,and you start a big learning curve..
Sue as an ex nurse,I think you are blaming yourself for not seeing it,I think I am right in saying Helen had issues also,but you can be to close,as a nurse,you do not want to look a fool, with me I do not care,I hope they proof me wrong, I know I come over as a person with attertude !!!,. I just want the best care I can for Slim,it is a sad thing to say,but instead of hindsight may be we should just listen ,to what we feel and act accordingly. Love Eve
Hi Tom
Start eating ,you can eat for as much as you like,but keep it health, 😛 🙂 😎
Then it will not matter about weight loss,you must be feeling ,it's all bee worth while,lets hope you have a very long remission .Eve
Hi Dai and Tom
May I suggest a design problem with a onesie it concerns men and women,not so much kids as there bodies are flexible .you do need an a functional escape area,were you can quickly remove part of he garment,to attend to you normal body functions.
Love Eve
Hi Helen
I wish you well on your belated or should I say early birthday,I feel like that about Christmas Slim has nt been well enough to enjoy one for a few years,with that in mind why do I look forward to it !!!
We all need a little Mills and Boon,in are lives even the people who go uck!!,seriously does this heart problem worry you,or are you just putting it down as another thing to add to the list.!!! Eve
Hi Tanya
So glad you managed to be with your Dad,that is something no one can take away from you,be kind to yourself have no regrets,
You are a lucky lady,good husband kids and a kind mother in law,
Move on with your life and enjoy it.Eve
Hi Sue
I will keep trying,I do understand that even with the knowledge a PET scan brings,it will not change the outcome in Slims case,what they fail to understand,we need that knowledge !! I say this because we are busy planning are future, we are retired and intend to make the best of what ever time while Slim is reasonable fit.
I think they forget we need peace of mind, the good and the bad,to adapt and come to terms with,after seeing the same consultant for over 2 years, I thought he understood us.
Sue dare I ask,you do not come up with these facts,unless there is some form of medical training !!;-) or is it because you have a consultant who involves you !! In your illness ( I am not a number ) springs to mind.
We all wish for hindsight ,I suppose it is part of this illness
I do have a plan ,Slim is in good spirit mentally ,which is a bonus,saw are own doctor,who has given us good advice on pain relief, this seems to be working,it becomes a problem when you cannot sleep,it causes fatigue and exra pain.
Anyway morning has arrived time to walk the dog. Love Eve
Hi Ted
It is not strange,it sounds if they are checking your Kappa Light chains,they send a blood sample off takes a while for results to come back,then I'm a few months they will do the same again,this gives them extra knowledge to see how the Myeloma is advancing,it is just another marker to manage the stage of Myeloma.
Hope that explains it you can ask for a copy!!! The doctor can point out the important numbers.Eve
Hi Helen
Lets hope you find the key
Slims bloods are good,even kappa light chains showing rise,but on the 7 May it will be 3 months from the last BMB he will have another ,then the wait until 24 May for results. 10 percent three months ago.i wonder what it will be in 3months and 3 weeks.??? It is hard to just have BMB as marker,.
They do not have to keep saying it is unusual ,
Fatigue through lack of sleep springs to mind,no ups and downs, do not know which is worst knowing or not knowing.Love Eve
Hi Terry
You are in the shock stage,Slim only got 6 months between 100 day BMB and the next one,your life turns up side down,we thought he might get 2 years,so yes it,s a bit of a bummer,Helen says it bites you in the bum,when you do not expect it,I call it a shark attack.
Slim worries about me,why???.you cannot change the future ,I want to just have nice times ahead of us,I will not let this Myeloma take over all are life,yes we have to adapt and change things that are no longer suitable in are future.
Give yourself time to accept things,we both had are tear,s,you would not be human if you didn't,.Eve
Hi Terry
We all know about MM,it is how you see it,and how it effects your life.!!!
Take mM out of the equation ,and do what ever Floats your Boat,my husband believes look after number one first,might seem selfish,but it works for him. As a wife and mother,I have different priorities ,??? Or is it just the fact that women are natural carers.
The old saying springs to mind,you work to live,these days it seems you live to work. Why ask us??? We do not know you personally ??
When you are young you make decisions without fear.when you are older you seem to loose that ability.
The only thing Myeloma does to your life is give you the knowledge that time is short.Eve
Hi Charlie and Mary
SCT already seems like you were new on here not long,you had a few blips and now going forward for SCT.:-)
Well you have has good advice from above,it is hard work once there home,are you having it done in Southampton or Kings,try to get the SCT out of the way first,. My advice is do not bother to buy new clothes plus if Charlie has a favourite mug take it in the things in as needed as space is usually minimum .lots of hospital s have Internet connection worth paying for special if you cannot visit if your in the Isle of Wight ,worth thinking about I pad connection to Skype .
Good luck,it is a worrying time ,but even though Slim only got 6 months you have to look at everyone many get years.Love Eve.
