[AliParticipant]

Hi Karen

My name is Ali and its my Mum with MM – shes 58 and was diagnosed last November. Mum was on RCD for 6 cycles and then had her SCT at Nottingham City under Prof Russell in August this year. As Dai says the whole team there are brilliant, and you will be looked after well.. She was told last week that she is in complete remission and has no detectable myeloma in her bone marrow:-D . Its been a shite year for us all as a family (sorry for the swear guys) but you will get through it, and as our friend Tom would say its "onwards and upwards".

Love Ali x

[KesParticipant]

Pleased to here the hospital is fab but didn't realy expect it not to be . Thank you for putting my mind at ease x x x
Regards
Karen

[KesParticipant]

Hi Ali

Really pleased with your good news bout your mum 🙂 . I liked Proff Russell when I met him , straight to the point & no beating about the bush !! ..
Just waiting for date for SCT then off we go

Regards
Karen x x

[GillParticipant]

Hi Kes

mm is a complete and random illness. Some people live for umpteen years and others (like my husband) don't get that long.

Stephen and I decided just after he was diagnosed that if we did not continue our lives "normally" whatever that is he might just as well die there and then

We made no long term plans ie well in 8 years time you will get your state pension and we will ……. but we did plan a little way ahead ie shall we go to France next month shall we look at booking up?.

Yes it was bloody hard sometimes but we lived every day as normally as we could right up until a few days before he died He was 57 but we both decided that if we didn't "live" neither of us would have any life and we both wanted to get the best and most we could out of whatever we had left.

Please Please try to live your life as you would. I always said to Stephen "you are diagnosed to go first but Hey what's to say I don't get run over by a bus tomorrow" so we tied mm up into a little box wrapped it in string and put it to the back of our minds until we had to get it out and unwrap it

mm attacks your body please don't let it attack your whole life Plan your plans. Dream your dreams and live your life to the full. After all there may be a no 3 bus with yours or my name on it just around the corner:-)

Good luck and good health from Gillx

[tomParticipant]

Hi Karen

And a warm welcome to you, you have had some great advise from the group and I hope it has helped?

As you have read some peopls have placed the MM rthingie in box's shoved it in a cupoard under the stairs I have placed mine on my left shoulder in a imaginery brick box (with Lid 😉 ) and leave it alone(as best i can) for as long as I can 😎 and rush through life like its gonna rain.

Love and best wishes in your road to remission

Tom "Onwards and Upwards" xxxx

[KesParticipant]

Thank you all x x

[AlexBParticipant]

Hi Kes

I'm 39. I was diagnosed in August too. And I'm on my 5th cycle of PAD. Myeloma sucks. It's a pain (literally), and it won't go away. I'd love to go through a whole day without thinking about myeloma once. I wonder if that will ever happen.

On the other hand. We only live once. I'm certainly not going to sacrifice whatever life I have to moping around a stupid disease. I am fortunate that I am self employed and part way through a university course too – so I'm doing my best to continue both of those so I have something to do (and something else to think about). I'm also lucky in that I have 3 small children – who don't deserve to have their lives wrecked by myeloma either. They do a great job of keeping me sane and keeping me alive beyond my disease.

Don't be ashamed of feeling down – we have every reason to. It's a pretty tough hand to be dealt (makes you realise how easy life can be). And don't be deceived by how physically rubbish the combination of disease and treatment can make you feel. I just had an amazingly active weekend… followed by two days where I've hardly got out of bed.

Allow yourself the time you need, but also make sure you make the time to do some things.

I hope you and me are still having this conversation in 20 years!

[KesParticipant]

Hi Alex
Thanks for your reply both diagnosed at the same time !! .. I don't understand what "pad" Is I'm on CTD trial also my 5th cycle .. Like you I wish I could go just one day without thinking about the bloomin Myeloma !!!! .. I get lots off dark thoughts & have a tendency for pushing people away , which I know is spiteing myself ,
Are u having the CST ?? I hopefully will be , but I have a constant cough I've had a chest X-ray & due a intensive MRI Scan on 29th nov . I become breathless & wobbly got dreadful tremours & a mushy brain !! Think it's part of the drugs side affect .
I have a wonderful specialist nurse called Tracey who is very supportive she's a great leaning post .
While I was in hospital waiting for them to discover what was wrong with me I met another lady who only lives 8 miles from me & is 42 she was also diagnosed with myeloma we keep in touch regular by text phone & Facebook . She is much stronger than me . & just gets on with it she too is on the trial but RTD .
I'm pleased your able to carry on with your course like you say it does take your mind off things for a while , unfortunately I can't concentrate much so would be a right dumbo . I absolutely love photography but not picked up my camera sinc being home . I even struggled to remember how to use the laptop !! .
I should soon be having an Hickman line fitted then my brain may work a bit better when off the oral drugs ,

Good luck with your treatment & enjoy your children I have a beautiful grandson Oliver whom I love dearly but at the mo he totally wears me out … He is only 2 yrs old

Regards
Karen

[tomParticipant]

Hi Karen

I was on CTD had five cycles of it leading up to SCT in dec 2009.
When I was on CTD I had the cough(still got the bugger lol) and as for the wishy washy brain I was told its "Chemo Brain" and it will come back???? but I think I got Chemo brain then straight into Old age lol

Few of us on here have F/B think am here
tom.lappin.5@facebook.com well I think thats it Lol

Love Tom "Onwards and Upwards" xxx

[KesParticipant]

Hi Tom
Thanks for the info , the Mushy brain (chemo brain) 🙂 is right old pain in the Butt !!!!! . I was admitted with sickness , weightless , generally being unwell & the dreaded cough , also my kidneys are affected but light chains have gone down from 14,600 to 80.2 so hopefully something is going the right way .. The cough does worry me slightly though we will see what the MRI shows up next week hopefully NOTHING !!!
How are you now ?? You sound well
Regards

Karen x

[tomParticipant]

Hi Karen

Yep it looks like its going the correct way 😀 and as for the Chemo brain hey am a mere male I have had that for years (or so am told lol)
Am sure the MRI will be fine i have had a cough for years i think and it varies in degree of roughness he he.

I am doing great thanks, but I have always tried to beat it andnot bother too much about it and have been blessed with a great response to it all.

Nip over and find ne on FB

Love Tom "Onwards and Upwards" xx

[KesParticipant]

Hi Yom

It's great your so so possotive , I had a dreadful day yesterday !! Very depressed & dark mood .. 🙁
I have sent you a friend request on FB , it looks like you 🙂 you will have to check

I'm realy gonna try & kick my butt today

Regards
Karen

[PerkymiteParticipant]

Just thought I would say welcome Karen and the very best of luck with your treatment. As you have found no doubt there are some real nice helpful folk on this site.

Kindest regards – vasbyte

David

[KesParticipant]

Hi David
Thanks for the welcome , knowing people know what I'm on about does help !!!
I just want to put it out of my mind for a few hours a day !! Just so as to have a bit of normality but easier said than done .
Are you or have you had treatment ??

Regards
Karen

[DizzylizParticipant]

Just thought I'd pop in and say hello Karen,

I'm my hubby's carer (kev) he was diagnosed with MM August 2010 had stem cell transplant April 2011 at the nottm city hospital under prof: Russell the whole team there are brilliant! Sadly kev relapsed may this year and just finished velcade/ dex
And now on revlimid/dex hopefully get those pesky numbers down.
I see you will be having your sct in Nottingham it's the best! I'll be following you journey and you never know might even bump into you on one of our many clinic days.

Regards liz xx

[Author]

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