[charisma4Participant]

Hi everyone, I was diagnosed on Christmas Eve 2012. I feel shellshocked and very frightened .My initial treatment begins next week. Any tips on coping would be greatly appreciated.
many thanks, Lesley

[HelenRParticipant]

Hi Lesley,

I'm sorry to have to welcome you here… I can't even believe that it's now been nearly 8 months since I was diagnosed. It is a huge huge shock, so give yourself time. It doesn't happen in one day or one week or one month, but you will get used to it and get treated, and you will feel better than you do now (even if you may have to feel worse before you feel better!). There are very positive examples out there of people having long remissions, so don't listen too much to the average/median statistics – your experience will be unique.

Very useful advice is listen to your body, take it a day at a time, express your emotions to people, don't be afraid to be assertive about what you want and need.

This site is excellent. Little by little you will become an expert on myeloma! And people will always be ready to listen and to answer your questions. You are not alone in going through this.

Take care,
Helen

[eveParticipant]

Hi Lesley

It is very frightening

when you get that final answer,but we felt after months of not knowing what my husband had a sense of at least we know now,although I did burst in to tears at the doctors surgery anger was the next feeling why did the doctor not listen to me when I told him how ill Slim was,it took another doctor in the practice,who listened to what I said,if it had been caught earlier,the bone damage would have been minimal.

You are feeling just like we all felt except your,s on Christmas Eve,you will look back in a fw years and think,has this really happened !!!

As the months pass you will learn a lot,and in time you will be able to help people who come on this site .learn all you can,get info from Ellen,anything you want to ask,come on here,lots of tips and advice,try to take one day at a time,listen to your body,get your financiers soughted,this illness is not cheap,it comes at a price,time off work,hospital appointments,,help with any extras is there,even to a blue badge.

You might think you do not need this at the moment,and I hope you do not,but you will be ill before you get better,but you will get there,it is all do able,lots of people are getting good remission s ,welcome to the journey .Eve

[MicheleParticipant]

Hi Lesley

Yes, it's a terrible shock to be diagnosed with MM and frightening too. I hadn't got a clue about and had never heard of it before May 2011.
It felt as though my future life had concertinered and I honestly thought I only had a couple of weeks to live. I was only 49 at the time too.

Let me assure you that this is NOT the case.

As with any disease, knowledge is power, so I'd strongly advise you to use this site to learn as much as you can about MM. Don't do wild-card searches on the internet. It's mostly full of out of date information and will only scare you.

MM is very treatable and you do still have a future.

Can you tell us a bit about yourself. How were you diagnosed, where are you going to be treated, how old are you?

There are plenty of us on this forum who'll be able to help and support you along the way.

Speak again soon.
Michele x 🙂

[charisma4Participant]

Hi Michele,

Thankyou for replying, and for your very sound advise.

You asked me to tell you a little about myself. Well I'm 62, married,and retired living with my husband,daughter and two teenage granddaughters.I live in Birmingham.

My MM was discovered through a simple blood test for cholestrol.I have spent the last 18 months working hard to lose a couple of stone, and feel healthier than I had in years !!So you can imagine how shocked I was at the news.

After reading other peoples stories on the forum, I am feeling much more positive today,and not so alone .

Again, thankyou.
Lesley x

[MothasParticipant]

Dear Lesley
Having just been diagnosed before xmas I fully sympathise. I was left reeling by the news, concerned about prognosis, worried about how it would effect my life, relationships, career.

It's totally normal to be frightened but there is much hope for myeloma treatments and lots of us will be going on for years.

This forum is a good place to be.

Tom

[tomParticipant]

Hi Lesley

Its not a walk in the park to be honest BUT it is doable as we say I have had mine since 2008 (ish) CTD then SCT in 2009 and am now Drug free and doing well8-)

Stay fit and take it one day at a time.

Love Tom Onwards and Upwards xx

[VickiParticipant]

Hi Lesley,

Welcome :-(. My partner Colin was diagnosed in October 2011 and although Colin never said he was scared, I can tell you we both were. Having done Internet searches, wrong thing to do and didn't know about this site then, we were scared, frightened and it felt like our world had collapsed. New terminology, new life, new worries, medication, hospital after hospital visit!

Sounds grim, and at times it has been but we've got through it together culminating in Colin having a transplant and improving well. As Tom says it is doable. Hard to begin with but you do adapt.

This site and the myeloma medical team are a godsend, use them, they and the online forum friends have been more help than I can describe. 🙂 crack on, you can do it!

Vicki and Colin x

[teds31Participant]

Hi ,My name is Ted and I was diagnosed with MM (smoldering)about 5years ago, it sure is a big shock at first but you will come to terms with it as time goes on. Keep on this site and ignore all others ,you will find lots of help and some nice people. Ted

[charisma4Participant]

Thankyou all so much for the advise, you sound a lovely caring bunch.After reading your stories, I am feeling much calmer now and ready to fight every inch of the way (stubborn Taurean !).
Lesley

[tomParticipant]

Hi Lesley

Your more than welcome, now don't forget any question you feel you need to as then fire it in here ????nothing is too much to ask you now you are here will always have an ????to bend.

Love Tom Onwards and Upwards xxx

[VickiParticipant]

Come on Lesley you can do it 🙂

Vicki and Colin 🙂

[Author]

Posts