[PerkymiteParticipant]

Hi Carol, You are right about "grit your Teeth". My South African family told me of an Africans word, Vasbyte, I use it all the time now to remind myself if any doubts start to creep in that I am not going to live forever 😀 😀 . It means Bite Hard in the sense of english grit your teeth and get going.

Kindest regards – Vasbyte

David

[CarolBradley1Participant]

Hi David
I like that – Vasbyte is so much quicker to say and repeat than "grit your teeth"

No, your right we´re not going to live forever but for a heck of a site longer than this myeloma intends arn´t we?!!!!

My husband,beloved horse Harry and his companion are leaving for Spain on Thursday and I will follow next week when they have arrived safely (God willing). I am worried sick about them all (especially husband)but I know this is exactly the kind of thing we used to do before I was ill so
it´s our way of getting our life back I suppose. Just so wish I could travel with them if only to help keep everyone calm and content but doc and husband won´t hear of it so Vasbyte could well come in for some heavy usage over the coming week!

Vasbyte!

Best wishes
Carol
xxx

[OutdoorsPaulParticipant]

Carol/David
[b]Vasbyte[/b] yes I like the word it has feeling of determination about it!I to will use that word when abit of extra umph is needed.:-D

[JetParticipant]

Hi Paul

Like you, I have light chain myeloma and yes, I had to laugh when you said the 24 hour urine container was a bit intimidating. One time they asked me if I needed more than one…! 🙂

I just wanted to ask you or Carol if Dr Feyler's name is Charlotte? I had an about-to-be consultant do my initial bone marrow biopsy in Feb as part of the initial diagnosis. She's German and was SO lovely, calm and clear about the procedure. She was about to go off to Leeds to start a new role as a haematology consultant. If it is her, then I am sure you're in good hands. Please do send her my regards when you next see her – if it's not too intrusive on your own medical issues, of course.

As for the SCT, I was in hospital for 14 days in total. Different places operate differently, but I doubt you'll be in for 3-4 weeks. Maybe they say up to 3-4 weeks just to give you the worst case scenario??? A friend of mine in Manchester had the high dose chemo and stem cells returned, then they sent her home over the weekend, to return on the Monday when the effects of the chemo started to kick in.

I would say that it is the worst thing I've ever been through and while going through it, it felt interminable, BUT… now I am 70+ days post-SCT and feeling so much better, stronger, more energetic, more positive in outlook and most importantly, with a normal ratio of kappa:lambda chains and no myeloma proteins in my urine, I am now in complete remission!

If you want to know any more, you're welcome to take a look at my blog: jetblackliving.wordpress.com.

I admire your positive attitude and am sure your regular exercising will really hold you in good stead in terms of coping with the meds and procedures, recovery and generally staying healthy.

I wish you all the best.
Jet

[peggyParticipant]

Hi Paul,

Only just seen this and in a bit of a rush, so briefly. I'm 54, also Light chain, diagnosed some time ago, probably June/July 2011 but also just starting second cycle of RCD on trial. I too had bad reaction to Allopurinol and was hospitalised for more than 3 weeks. So bad that I called up my son from Uni to say possible farewell. Didn't even feel really ill so was prepared for the worst until I saw my special needs daughter and was determined to pull through for her at least until she was nearly ready to be 'launched' into the big wide world.

Well I'm still here and feeling quite ok 3 days into new cycle but taking a bit more care. Tomorrow I'm the carer of my other half who is having some investigations so I'm hoping that will turn out ok otherwise Social Services will have to take over. Not sure how to extend this, so I'll say goodbye now, Peggy

[OutdoorsPaulParticipant]

Hi Jet
Dr Feyler s name is Silvia and she is a consultant Hematologist and you are right, she is German and she is an excellent consultant, very caring with a very good insight into procedures.I see Dr fayler in Halifax but she also works in Huddersfield and I guess Leeds to.Sorry about late post just been busy recently.Glad to hear that SCT does not always mean 3-4 weeks in Hospital….
take care jet and i will visit your blog
Paul

[JetParticipant]

Ah, it's not the same woman I mentioned, but glad to hear your Dr Feyler is also an excellent consultant.

[pennylawsonParticipant]

hello everyone
just been diagnosed and very happy to find there are other relatively young folk out there with myeloma, as in some ways I feel 75 rather than 44 since my diagnosis a week ago. I used to run, cycle and walk in the mountains all the time so finding it very hard to slow down, but glad I am fit and young and in a good place to fight this. I will run again!

[brochoParticipant]

Hi Penny welcome your wonderfully positive attitude to mm will get you through it !! Being young and fit will also be a big help Just be careful to rest when your body demands it as treatment takes it out of you But I have no doubt you will be running, cycling and mountain walking again before very long Good luck and if you need support there are lots of lovely people with all sorts of experience on here only too happy to help best wishes Bridget

[DaiCroParticipant]

Hi Penny,

Can I suggest that you introduce yourself in the newcomers section – tell us a bit about your background etc… I am sure that there are many here who would like to say hello to you in your own space. 🙂

Dai.

[OutdoorsPaulParticipant]

Hi Penny
Sorry to hear about the diagnosis but from your post you sound up for getting your running shoes back on again! being positive is the thing to be.But you must listen to your body and when it says "rest" or "slow down" then you should.I did a 12 mile cycle ride around Derwent reservoir yesterday and really enjoyed it but today took it easy and felt tired.I am now on my 4th cycle on RCD pathway,over time you will begin to notice a pattern with the medication and a just things accordingly.Like you my wife and I keen walkers in the mountains and enjoy cycling, its about balance I think.I would agree with Dai and say do a post on newcomers section because there are lots of great people on this site with a host of experience who can offer advice and recall from experience,and yes dont worry there are other younger folk with Myeloma as well. always happy to chat.
Paul

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