[KirkybParticipant]

Hi all,

I'm new to this, well actually I have been browsing for a few months, but I suddenly have the urge to post a message.
I was diagnosed with Myeloma last August, at the age of 36, I am fining it hard to come to terms with the illness and to be honest am still in in denial,please any advice would be appreciated …

Thanks
Kirsty

[HelenParticipant]

Hello Kirsty
Not the nicest site to join but has the nicest people, especially when the going is getting tough. You are very young to have this disease thrust upon you but there are others your age and the under 50s have some other place where they communicate in a different language or something;-)
I've been struggling with the diagnosis and coming to terms with illness for the last 13 months or so, so you are not alone there.
Denial is normal- i had a copy of my bone marrow results in my handbag for 3 weeks after diagnosis which I had to keep reading to make sure it wasn't a dream ( hmmm nightmare…..:-/ ) anger is normal too and it's where I am most of the time, I feel so cheated by it.
Ask anything, there is usually someone who can answer your questions, build you up, or just talk or read your thoughts (..as long as you write them down we are not really mind readers:-) )
Tell us what stage you are at, have you started treatment, do you have family and friends behind you and are they coping, or are they as shell shocked as you.
Take care
Helen

[ElizellenParticipant]

Hi Kirsty!

Welcome to the club you never asked to join.

I was turned 60 and like you I took a while to accept that I could be diagnosed with a disease that I had never even heard of, as I had thought I was suffering from "just" a bad back and was actually expecting to be offered back surgery, but my consultant soon got things in motion.

From the start she was positive that this was something that although it could not be cured (at the moment) had many options of treatment that should allow me a long time to continue a relatively normal life.

2 years, radiotherapy, chemotherapy and a stem cell "transplant" later I am officially in complete remission and only seeing her every 2 months or so. Hopefully you will have a similar path along this pesky MM journey.

I am glad you decided to step out of the shadows and post, as I have found it comforting to know I can always ask questions, tell any good news and even rant and rave if needed and there is always someone ready to help, empathise or calm me down as needed.

Lots of love and cyberhugs from
Eliz
XX
X

[tomParticipant]

Hi Kirsty

Like the others a warm welcome to this great site?

Sorry you had to join us but as away now you have opened the doors 🙂

As for your first one the advice i can give so far is take it slowly and one day at a time, lots of members here going and gone through what you are about to do.

I cant advice YOU what to do but I can tell you what I did and that was to fight it and get my Dr to throw whtever at it as I (my words not the wifes lol) am young amd fit enough to fight it 🙂

That was my take on it in Jan 2009 and am now sat here in remission and on no treatment at all 😎

Ask what you want to know Kirsty, no Q is too daft or silly so ask away.

Good Luck in your road to Remission.

Love
Tom "Onwards and Upwards" xxx

ps what hospital are you under as you might get to know some one else that has been and had the treatment in same hospitall 🙂

[brochoParticipant]

Hi Kirsty a big welcome to you although this site must be the last place you thought you would need. I am glad you found it though as it will help you get your head around being diagnosed with myeloma Try not to look elsewhere on the internet as a lot of the info is out of date and some of it is just plain scaremongering You must still feel as if it is all happening to someone else I am sure but as Helen said denial is normal we have all been there As your treatment begins , if you need any, it begins to make a bit more sense Although you must be worried about the future try not to look too far ahead though just take it slowly whilst you gather the information you need Have you got a specialist nurse? Try and have a chat with them , sometimes doctors however good arent too hot on explaining things The specialist nurse will be only too happy to put your mind at rest Have you a family or friends to support you, I hope so , dont try and be strong and do it alone we all need support to get us through Well I have waffled on long enough sorry but I am so glad you posted Dont forget to come on here if anything is bothering you , there will always be someone to answer you Take care Kirsty and one day at a time love Bridget x

[GillParticipant]

Like everyone else Welcome and wish you were not here

Please ask away My husband (Stephen) was diagnosed at 53 and that was considered young then (2008)

Everybody on here will be only too pleased to chat, answer questions when they can and give you support. Do try the under 50s group too. I keep trying to convince them I am 16 (I'm 62 but don't tell them):-)

All the very best to you Gill xx

[PerkymiteParticipant]

Hi Kirsty, Welcome(?).

You will find you are amongst friend here. The site is very good and you should take time to have a good look around it it has bags of useful information.

I look forward to reading your posts, kindest regards ? vasbyte

David

[OutdoorsPaulParticipant]

Hi Kirsty
I was diagnosed last Aug at 39 and it was abit of a bomb shell as well,but the people on this site a great and always happy to support where can.I turned 40 in December and currently on valcade injections and awaiting stem cell transplant.You will come across medical jargon….if unsure just ask we are all on a learning curve.But stick with this site for sound advice and support.And as Bridget would rightly say listen to your body and and when you need to rest "rest" and when you got the energy "go for it".
cheers Paul

[DaiCroParticipant]

Hi Kirsty,

I wish you as warm a welcome as can be expected… an unwelcome welcome if you like… an opposite, like the old TV programme, 'I Wish You Were(n't) Here'. But here you are so welcome.:-D

This is the only place on the net that you will ever need or ever need to be. 😎 🙂

There are a few American blogs and newsletters which are good for current information (America is always about 18 months ahead of us and nearly all new drugs and treatments come from US pharmaceutical companies and hospitals/specialist clinics). But for support and information based on patient and carer's experiences, for current treatments and medicines, domestic, financial and carer support issues, then this site and this forum in particular will give you all that you need and then some more.:-)

Before you know it, if you are so inclined, you will be a 'regular' with experience under your belt, even if it is after the first treatment.. there will always be someone just ahead of you and always someone almost stepping on your coat-tails… you will look to one and support the other… and so is has been and so it will, hopefully, ever be.:-)

The staff at MUK are excellent, attend at least one infoDAY as soon as you can, the information exchange and the opportunity of meeting other mmer's and the MUK staff, is such a rewarding and long-lasting experience. They also run this site and are very responsive to our needs… the Grief & Loss section was our idea and the staff created it for us… it came from a need to express end of life procedures and the experience of dealing with the aftermath… it has also grown into a goodbye area, where our carer friends, often the leading lights on this forum, decide its time to go… the grief and loss of good friends can be quite harrowing… and I have found the loss, by proxy of the ones they leave behind almost as hard to bear. We become good friends… only cyber but very, very real… and we patients can sometimes lean a too little heavy on our carer friends… at least I believe so.:-|

So welcome, ask away and understand that there are no 'no go' areas – whatever you ask or want clarifying, be it a medical procedure, drug related of plain fright and funk… there is aways someone who will try and answer… always. The first thing you should understand and that there is no such thing as 'it must only be me'… believe me that is not the truth… far from, there is always someone who ha been there before, such is the width and breadth of mm in all its various guises, problems and dilemmas.:-/

Regards

Dai.

[DebsParticipant]

Hi Kirsty

Welcome! Not that you want to be here. There are lots of us here to support you….I don't come on too often as I'm just post transplant and need a bit of a break occasionally whilst in remission.

I was 34 when I was diagnosed with smouldering myeloma, and then started treatment in 2010, just over a year after initial diagnosis. I had 9 months of chemo on the Myeloma XI trial, a SCT in July last year, and would say I'm now doing pretty well and at about 90% full strength.

The advice everyone has given you is great. Stick to this site, try out the Under 50 site that Scotty has set up too (if you look at the Under 50 on here, you can send Scotty a message and she'll send you the link). Each site offers slightly different things…here you get a wider breadth of experience from lots of people that care very much, on the other site you can let rip in a way that this site won't let you unless you use lots of stars and hash signs!!!

If you want to email me, please do, as I know sometimes it can feel a bit open on here. Though I would say, that everyone supports you 100% if you do 🙂 My email is gascoynedeb@gmail.com

Anyway, take care and don't worry about burying your head….we all handled our diagnosis' in different ways and you have to do what is right for you 🙂

Deb x

[Anonymous]

Hi Kirsty

I was also diagnosed last year, (July) and am 46. I've just finished my stem cell transplat at Bart's.

I now just need to wait and see where I go from here.

I'm hoping to go back to work maybe around June/July, obviously depending on how I'm feeling.

I don't need to reiterate what has already been said, as the rest of the group are more with it than I am, I just tent to plough through it all, and wait and see what is coming up next, without getting too stressed about it all. Happy go lucky, and what will be will be I guess.

They are all a good bunch though, so as they have suggested, ask away when ready, but also try to not let yourself get bogged down by all the information.

Terry

[DaiCroParticipant]

[b]Debs wrote and I quote:[/b]

[i]'Each site offers slightly different things…here you get a wider breadth of experience from lots of people that care very much, on the other site you can let rip in a way that this site won't let you unless you use lots of stars and hash signs!!!'[/i]

No longer the case people… I had a word with admin a while back now and they agreed to lift the auto/censored embargo/veto… taking us on trust as responsible adults to monitor and marshall ourselves regarding language (of the 'Timothy' sort).:-0

So its up to us and if we really feel so inclined either due to Dex, bad news, sheer frustration or if your name just happens to begin with Eve… then it will be so – but not to be abused.:-) 😎 😉

Dai.

[mhnevillParticipant]

Hi Kirsty

Soory I missed welcomimg you earlier, for reasons I will be writing about in a minute. Still, as always, everyone else has done a good job of saying hello from the site none of us wanted to join! I find it so helpful and supportive and learn so much.

Of course you will be finding all this hard to take on boeard – who wouldn't! Let's face it, lots of GPs don't really know a lot about MM. As others have said, when you feel up to it, do let us know how you got to here and what treatment is planned. It helps us to get a picture of you in our minds.

Lots of love.

Mavis

[KirkybParticipant]

Thanx to all your replys, I have just had a lovely two week break in Turkey.
Back to reality though….

When diagnosed I had CDT, wasn't particually sucessesfull ,then in December I received Velcade, proved move affective, however my consultant said my IGG has raised just before my Hols…no luck!

He is now pushing for my SCT, possibly May, or June….not looking forward to it!

Any advice please?

Many thanx again , too many comments to reply lol x

Kirsty

[DebsParticipant]

Hi Kirsty,

We'd all be lying if we said that the SCT was a lovely experience, but you do get through it!

The main things are to keep people away as much as possible for the 3 weeks you're in, and if possible for a month or so after. I only let my husband, and one of my 5 siblings visit….my parents and the rest, I made wait. I thought it would be awful not seeing people, but to be honest, I didn't really want to see anyone else and most of the time, I didn't want to see them either!

Take in something to brighten up your room and some dvd sets so you can watch in short bursts!

Lots of pi's and clothes to change into each day – it made me feel so much better to get up and dressed each day.

And when you get home, just REST lots and lots, and SLEEP when your body tells you need it…

There are probably lots of things I've forgotten but these are the things that spring to mind 🙂

Take care
Debs x

[Author]

Posts